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A comparative evaluation of hospital versus clinic education of tuberculosis patients in Vancouver Jang, Kathy 1978

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A COMPARATIVE EVALUATION OF HOSPITAL VERSUS CLINIC EDUCATION OF TUBERCULOSIS PATIENTS IN VANCOUVER by KATHY JANG B.A., U n i v e r s i t y o f Western O n t a r i o , 1971 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE i n THE FACULTY OF GRADUATE STUDIES Department of Health Care and Epidemiology We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA September, 1978 (c) Kathy Jang, 197 8 In p r e s e n t i n g t h i s t h e s i s in p a r t i a l f u l f i l m e n t o f the r e q u i r e m e n t s f o r an advanced degree at the U n i v e r s i t y o f B r i t i s h C o l u m b i a , I a g r e e that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and s t u d y . I f u r t h e r ag ree t h a t p e r m i s s i o n f o r e x t e n s i v e c o p y i n g o f t h i s t h e s i s f o r s c h o l a r l y p u r p o s e s may be g r a n t e d by the Head o f my Department or by h i s r e p r e s e n t a t i v e s . It i s u n d e r s t o o d tha t c o p y i n g o r p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be a l l o w e d w i t h o u t my w r i t t e n p e r m i s s i o n . Department o f H!>/}/. 7/i AiO~h £ Pt,DK///dLt\r~y The U n i v e r s i t y o f B r i t i s h Co lumbia 2075 Wesbrook Place Vancouver, Canada V6T 1W5 Date A^f , lilt ABSTRACT A survey was conducted d u r i n g the months of June and J u l y 1976 at the Willow Chest C l i n i c i n Vancouver, B r i t i s h Columbia, u s i n g a q u e s t i o n n a i r e designed t o t e s t t u b e r c u l o s i s p a t i e n t s ' knowledge on the cause, course, treatment and pre-v e n t i o n of t u b e r c u l o s i s , and t h e i r a t t i t u d e towards the p a t i e n t education process. The q u e s t i o n n a i r e was administered t o 159 new a c t i v e t u b e r c u l o s i s p a t i e n t s a t t e n d i n g the C l i n i c f o r follow-up treatment. Approximately h a l f of t h i s p o p u l a t i o n had been h o s p i t a l i z e d at Pearson H o s p i t a l d u r i n g t h e i r i n i t i a l treatment phase, while the other h a l f was t r e a t e d a t the Willow Chest C l i n i c s i n c e the d i a g n o s i s of the d i s e a s e . A : c o n t r o l p o p u l a t i o n of 162 p a t i e n t s matched by age, sex, education and e t h n i c o r i g i n was s e l e c t e d from p a t i e n t s a t t e n d i n g the C l i n i c f o r other r e s p i r a t o r y d i s e a s e s . The o b j e c t i v e of the study was to compare h o s p i t a l versus c l i n i c e ducation of t u b e r c u l o s i s p a t i e n t s i n Vancouver, s i n c e the product and the process of p a t i e n t education have an important impact on the treatment and c o n t r o l of t u b e r c u l o s i s . The t u b e r c u l o s i s p a t i e n t s knew more about the d i s e a s e than the n o n - t u b e r c u l o s i s p a t i e n t s . The H o s p i t a l i z e d p a t i e n t s had c o n s i s t e n t l y and s i g n i f i c a n t l y higher scores than the C o n t r o l group. The N o n - H o s p i t a l i z e d p a t i e n t s had s t a t i s t i c a l l y higher scores than the C o n t r o l o n l y i n the area of knowledge of treatment of t u b e r c u l o s i s . The p a t i e n t s who had been h o s p i t a l i z e d knew more about the d i s e a s e than p a t i e n t s who were t r e a t e d on an ambulatory b a s i s s i n c e the d i a g n o s i s of the d i s e a s e . B i a s e s such as t h a t r e s u l t i n g from the s e l e c t i o n process of the Study and C o n t r o l groups, the design and a d m i n i s t r a t i o n of the q u e s t i o n n a i r e c o u l d have c o n t r i b u t e d to the d i f f e r e n c e s i n the scores. Age, education and e t h n i c o r i g i n were found to have s i g n i f i c a n t impact on the knowledge of the p a t i e n t s . However, these v a r i a b l e s had been a d j u s t e d f o r i n the f i n a l a n a l y s i s of the s c o r e s . Since the h o s p i t a l had p r o v i d e d more p a t i e n t education o p p o r t u n i t i e s than the c l i n i c , the h i g h e r scores c o u l d be due to the p a t i e n t education process. P a t i e n t education c o u l d have i n c r e a s e d the knowledge of t u b e r c u l o s i s among the h o s p i t a l i z e d p a t i e n t s . The importance of good communication i n p a t i e n t e d u c a t i o n was r e i t e r a t e d . That these d i f f e r e n t groups of p a t i e n t s , by v i r t u e of t h e i r d i f f e r e n c e s i n age, education and e t h n i c o r i g i n , had t h e i r unique education needs was e v i d e n t from the p a t i e n t s ' response. Hence d i f f e r e n t means of communicating d i s e a s e i n f o r -mation i n v a r y i n g amounts would be necessary. The use of n o n - t u b e r c u l o s i s p a t i e n t s to estimate the l e v e l of knowledge of t u b e r c u l o s i s p a t i e n t s p r i o r to t h e i r d i s e a s e has not been completely s a t i s f a c t o r y . I t i s recommended t h a t f u t u r e p a t i e n t education programs have mechanisms f o r e v a l u a t i o n b u i l t i n t o t h e i r design. T h i s would al l o w a b e t t e r assessment of the e f f e c t i v e n e s s of p a t i e n t education. TABLE OF CONTENTS Page ABSTRACT i i LIST OF TABLES v i i LIST OF FIGURES ' i x ACKNOWLEDGEMENTS x INTRODUCTION 1 Chapter 1 LITERATURE REVIEW 3 Par t 1 - TUBERCULOSIS 3 1. T u b e r c u l o s i s i n Canada and B r i t i s h Columbia . 3 A. M o r t a l i t y 3 B. Incidence 4 C. Prevalence 5 2. Treatment o f T u b e r c u l o s i s 6 3. T u b e r c u l o s i s C o n t r o l i n B r i t i s h Columbia . . . 10 Par t 2. PATIENT EDUCATION . . . . 13 1. P a t i e n t Education i n T u b e r c u l o s i s 14 2. P u b l i c Knowledge and A t t i t u d e Towards T u b e r c u l o s i s 16 3. Knowledge and Compliance . 16 4. Communication i n P a t i e n t E d u c a t i o n 18 5. P a t i e n t Education Programs 2 0 i v Page Chapter 2 METHODOLOGY 22 1. Objective 23 2. Sampling 24 3. Questionnaire 26 4. Interviews 27 5. Analysis 28 Chapter 3 RESULTS 30 1. Demographic Structure of the Study and Control Groups . . 30 2. Patient Knowledge . . . . . . 33 A. Cause of Tuberculosis . . . 33 B. Infectiousness and Mode of Disease Transmission . 34 C. Symptoms of Tuberculosis . 35 D. Risk of Tuberculosis . . . 36 E. Course and Development of Tuberculosis 36 F. Diagnostic Tests and Prevention, of Tuberculosis 37 G. Treatment of Tuberculosis . 39 H. Sources of Disease Information 40 I. Attitudes Towards the Disease 42 3. Patients' Attitudes Towards Disease Information . . . . 44 A. Patients' Rating of Their Own Knowledge 44 B. Perception of How Disease Information was Communicated 44 C. Desire for Disease Information 4 6 v Page Chapter 3 (Continued) D. S a t i s f a c t i o n / D i s s a t i s -faction with Present Knowledge 4 6 E. Preferred Information Source 4 9 F. Attitude Towards Treatment Services 49 4. Analysis of Scores 52 A. Sample Scores 52 B. Age 53 C. Sex . 54 D. Education . 54 E. Ethnic Origin 55 Chapter 4 DISCUSSION 58 CONCLUSION 70 REFERENCES 72 APPENDIX A - Questionnaire 84 APPENDIX B 94 v i LIST OF TABLES Table Page 1.1 Demographic S t r u c t u r e s of the Study and groups 31 2.1 P a t i e n t Knowledge: Cause of T u b e r c u l o s i s . . . 34 2.2 P a t i e n t Knowledge: I n f e c t i o u s n e s s and Mode of Disease Transmission 35 2.3 P a t i e n t Knowledge: Symptoms of T u b e r c u l o s i s . . 3 6 2.4 P a t i e n t Knowledge: Risk of Development of T u b e r c u l o s i s 37 2.5 P a t i e n t Knowledge: Course and Development of T u b e r c u l o s i s 38 2.6 P a t i e n t Knowledge: D i a g n o s t i c T e s t s and Pre v e n t i o n of T u b e r c u l o s i s 3 9 2.7 P a t i e n t Knowledge: Treatment of T u b e r c u l o s i s . 41 2.8 P a t i e n t Knowledge: Sources of Disease Information 42 2.9 P a t i e n t Knowledge: A t t i t u d e Towards the Disease 43 3.1 P a t i e n t A t t i t u d e : P e r c e p t i o n of Own Knowledge . 45 3.2 P a t i e n t A t t i t u d e : P e r c e p t i o n of How Disease Information was Communicated 47 3.3 P a t i e n t A t t i t u d e : D e s i r e f o r Disease Information 4 7 3.4 P a t i e n t A t t i t u d e : S a t i s f a c t i o n / D i s s a t i s f a c t i o n w i t h P a t i e n t Knowledge 48 3.5 P a t i e n t A t t i t u d e : P r e f e r r e d Information Source. 4 9 3.6 P a t i e n t A t t i t u d e : A t t i t u d e Towards Treatment S e r v i c e s 51 4.1 Means and Standard D e v i a t i o n s of Scores by Samples (ANOVA wit h Tukey's Method of M u l t i p l e C o n t r a s t s ) 52 v i i Table Page 4.2 Means and Standard D e v i a t i o n s of Scores by Age Groups (Two-way ANOVA) 53 4.3 Means and Standard D e v i a t i o n s of Scores by Sex (Two-way ANOVA) 54 4.4 Means and Standard D e v i a t i o n s o f Scores by Educ a t i o n (Two-way ANOVA) 55 4.5 Means and Standard D e v i a t i o n s by E t h n i c O r i g i n (Two-way ANOVA) . . 56 B . l Demographic S t r u c t u r e o f the Non-Respondents of Study and C o n t r o l Groups 95 B.2 Age and Education D i s t r i b u t i o n o f the Study and C o n t r o l Groups 96 B.3 P a t i e n t Knowledge by General Education L e v e l . . 97 B.4 P a t i e n t Knowledge by Age 98 v i i i LIST OF FIGURES Page F i g u r e 1 P o p u l a t i o n Sampling 2 5 i x ACKNOWLEDGEMENTS I am indebted t o many people who had c o n t r i b u t e d towards the w r i t i n g and completion o f t h i s t h e s i s . I thank the chairman, Dr. M. V e r n i e r , and members of the t h e s i s committee: Dr. S. Grzybowski, Dr. M. Sc h u l z e r , and Dr. N. Schwartz, f o r t h e i r p a t i e n c e and advice throughout the many d r a f t r e v i s i o n s . My s p e c i a l a p p r e c i a t i o n i s extended to Dr. Grzybowski who had supported the study i n many ways. I thank a l l the s t a f f and p a t i e n t s of the Pearson H o s p i t a l and Willow Chest C l i n i c f o r t h e i r time and c o o p e r a t i o n which had f a c i l i t a t e d the smooth progress of the i n t e r v i e w s . My deepest g r a t i t u d e i s due t o a l l my f r i e n d s i n Vancouver, e s p e c i a l l y Margaret McPhee, Jim F o o r t , Audrey Pope, C a r o l Gray, C o l l e e n S t u a r t , Ted Myers, Wendy Manning and many many o t h e r s . T h e i r constant encouragement, empathy and sense of humour - not to mention t h e i r a s s i s t a n c e i n the p r o v i s i o n of accommodation and t r a n s p o r t a t i o n d u r i n g my frequent and extended " t h e s i s t r i p s " t o Vancouver - had made the completion of t h i s t h e s i s p o s s i b l e . L a s t but not l e a s t , I thank my c o l l e a g u e s a t the Department of Health i n Y e l l o w k n i f e , Mr. R. McDermit i n p a r t i c u l a r , f o r t h e i r understanding and encouragement i n s p i t e of my o f t e n untimely absence from work. x INTRODUCTION Patient education should be an in t e g r a l part of t o t a l patient care. Its objective should be the dissemination of health information with the aim of formation of good health behavior. Compliance with the medical regimen i s an esse n t i a l aspect of the control of many diseases. Successful chemotherapy of tuberculosis has enabled tuberculosis to be p r a c t i c a l l y 100% curable. It has also s h i f t e d the treatment of tuberculosis from hospital centers to outpatient c l i n i c s . Increasing emphasis i s placed on early hospital discharge and patient self-medication with antimicrobial drugs on an outpatient basis. Good health behavior, i n the context of patients who are on treatment for tuberculosis, i s the compliance with the prescribed treatment course, and regular attendance of c l i n i c for check-ups. Depending on the extent of the o r i g i n a l disease, chemotherapy la s t s for 18-24 months. Thus patients need to have a thorough knowledge and understanding of the disease, the purposes and duration of treatment, and the possible side e f f e c t s of the drugs in order to follow through with the prolonged treatment regimen. Correct information about the disease minimizes the chances of the spread of i n f e c t i o n i n the community due to carelessness. Unwarranted over-caution about the p o s s i b i l i t y of in f e c t i n g others, when.such a danger does not exi s t , can be avoided. 1 2 P a t i e n t s ' l i f e s t y l e s are not r e s t r i c t e d u n n e c e s s a r i l y . Know-ledge of the di s e a s e a l s o serves t o a l l e v i a t e p a t i e n t s ' " l e p e r complex" caused by the remnants of s o c i a l stigma attached t o t u b e r c u l o s i s from pre-chemotherapy days. Hence, p a t i e n t know-ledge has an impact on both p u b l i c h e a l t h and p e r s o n a l happiness of p a t i e n t s . Education of t u b e r c u l o s i s p a t i e n t s takes p l a c e e s s e n t i a l l y i n two s e t t i n g s : h o s p i t a l s , where some are t r e a t e d f o r the i n i t i a l phase of t h e i r d i s e a s e ; and c l i n i c s , where p a t i e n t s r e c e i v e a n t i - m i c r o b i a l drugs on an o u t p a t i e n t b a s i s . H o s p i t a l i -z a t i o n i s c o s t l y i n p s y c h o l o g i c a l , f i n a n c i a l and s o c i a l terms, to both p a t i e n t and community. Hence, b e n e f i t s should be weighed a g a i n s t the c o s t s p r i o r t o the admission of p a t i e n t s . T h i s study proposed t o compare and ev a l u a t e the e f f e c t i v e -ness of p a t i e n t education i n h o s p i t a l and c l i n i c i n Vancouver, B r i t i s h Columbia, by examining what t u b e r c u l o s i s p a t i e n t s on treatment knew about the d i s e a s e . In a d d i t i o n , the study proposed to f i n d out whether the i n f o r m a t i o n p r o v i d e d t o them by h e a l t h personnel met t h e i r e x p e c t a t i o n s and a l l a y e d t h e i r concerns about the d i s e a s e . Chapter 1 LITERATURE REVIEW Part I. TUBERCULOSIS T u b e r c u l o s i s i s a di s e a s e caused by t u b e r c l e b a c i l l i . The d i s e a s e may occur i n many organs, the most common s i t e s being the lungs (pulmonary t u b e r c u l o s i s ) . I n f e c t i o n from t u b e r c u l o s i s used t o be a major cause of death a t one time. With the i n t r o d u c t i o n of chemotherapy, the e p i d e m i o l o g i c a l p i c t u r e of t u b e r c u l o s i s has been changed. 1. T u b e r c u l o s i s i n Canada and B r i t i s h Columbia In Canada, as i n many developed c o u n t r i e s , t u b e r c u l o s i s has been d e c l i n i n g over the past decade. At present, i t i s s t i l l d e c l i n i n g s l o w l y and s t e a d i l y . During the p e r i o d from 1967 to 1972, the d i f f e r e n t forms of a c t i v e t u b e r c u l o s i s have 48 d e c l i n e d from 26.6/100,000 t o 20.5/100,000. However, tuber-c u l o s i s i s s t i l l a problem i n some s e c t i o n s of the p o p u l a t i o n . M o r t a l i t y , i n c i d e n c e and prevalence are the most common i n d i c e s used to measure the frequency and d i s t r i b u t i o n of a di s e a s e . A. M o r t a l i t y M o r t a l i t y i n d i c a t e s how many people d i e of t u b e r c u l o s i s i n the p o p u l a t i o n d u r i n g a given p e r i o d o f time. 3 4 In 1973, there were 408 deaths i n Canada which had tuber-c u l o s i s as a d i a g n o s i s on the f i r s t p a r t o f the death c e r t i f i c a t e . T h i s gave a m o r t a l i t y r a t e of 1.8/100,000. In B r i t i s h Columbia, d u r i n g the same p e r i o d , the r a t e was 1.1/100,000. The p r o v i n c i a l r a t e s v a r i e d from 0.9/100,000 f o r P r i n c e Edward I s l a n d and Nova S c o t i a t o 3.4/100,000 f o r Quebec, and 13.2/100,000 f o r the 8 6 Northwest T e r r i t o r i e s . As the f a t a l i t y r a t e of t u b e r c u l o s i s i s r e l a t i v e l y low, t h e r e f o r e m o r t a l i t y does not assess completely the extent of t u b e r c u l o s i s i n Canada. B. Incidence Incidence i n d i c a t e s how many people develop the d i s e a s e i n a given p e r i o d of time. The number of new a c t i v e t u b e r c u l o s i s cases, as r e p o r t e d i n Canada, g i v e s a f a i r estimate of i n c i d e n c e . In 1974, 3,354 cases of new a c t i v e t u b e r c u l o s i s cases were re p o r t e d i n Canada. T h i s gave a r a t e of 14.9/100,000. In B r i t i s h Columbia, the r a t e was 16.5/100,000 du r i n g the same p e r i o d . The p r o v i n c i a l r a t e s v a r i e d from 10.7/100,000 f o r Nova S c o t i a t o 25.8/100,000 f o r Manitoba, 26.7/100,000 f o r Newfoundland, 30.9/100,000 f o r Yukon and 138.7/100,000 f o r the Northwest 86 T e r r i t o r i e s . There were more males than females among the new a c t i v e cases r e p o r t e d i n 1974 i n Canada: 1,965 males and 1,389 females, which gave a r a t e o f 17.5/100,000 for'males and 12.4/100,000 f o r females. The sex s p e c i f i c r a t e s f o r B r i t i s h Columbia were ': 20.7/100,000 and 12.3/100,000 f o r males and females r e s p e c t i v e l y , d u r i n g the same p e r i o d . ^ 5 The age s p e c i f i c rates of new active cases of tuberculosis increase with age for both sexes. The rate for 75 years and over was 67.5/100,000 for males and 26.8/100,000 for females i n Canada. The corresponding rates for B r i t i s h Columbia were 62.2/100,000 for males and 20.7/100,000 for females. 8 6 The rates of new active cases were much higher among Indians (151/100,000) and Eskimos (172/100,000) than among the 8 6 other Canadians (12.7/100,000). The new active cases accounted for. 85% of the t o t a l active cases i n 1974. The other 15% were reactivated cases, they constitute, therefore, a s i g n i f i c a n t portion of the t o t a l problem of tuberculosis i n Canada. In B r i t i s h Columbia, the r e l a t i v e proportion of new active cases to reactivated cases was about the same. The reactivated cases rates were 1.9/100,000 48 and 2.1/100,000 for Canada and B r i t i s h Columbia, respectively. C. Prevalence Prevalence indicates how many people have active tubercu-l o s i s at a given time. An estimate i s the t o t a l number of people under treatment on December 31 of each year. On December 31, 1974, 7,380 patients were under treatment for tuberculosis i n Canada, giving a rate of 32.6/100,000. The corresponding figure for B r i t i s h Columbia was 835, or a rate of 34.2/100,000.86 However, with the changing treatment regimen and the d i f -ferences i n the duration of treatment, patient under treatment rates r e f l e c t both the size of the tuberculosis problem and the difference i n i t s management. 6 Prevalence of tuberculosis i n f e c t i o n i s based on tuber-c u l i n * surveys of the population. Because none of the reported surveys were conducted on properly selected samples of the' population, there are no r e l i a b l e figures in Canada. I t can be said, however, that at the age of 15, less than 5% of individuals were tuberculin p o s i t i v e . 2. Treatment of Tuberculosis With the introduction of chemotherapy for the treatment of tuberculosis, the disease i s p r a c t i c a l l y always curable. The main anti-microbial drugs are: Isoniazid (INH), Rifampin (RIF), Streptomycin (SM) and Ethambutol (EMB). The treatment usually consists of an intensive phase when three or four drugs are used, and a continuation phase during which two drugs are u t i l i z e d / The intensive phase l a s t s anywhere from one to three months, and i s often administered i n hospit a l , while the continuation phase la s t s about 18 months, and i s usually taken on an outpatient basis. I t i s l i k e l y that shorter course of chemotherapy (6-9 months) w i l l prove quite adequate when INH and RIF are u t i l i z e d . 35 However, t h i s i s s t i l l under study. Since the 1950's, various studies have shown that when chemotherapy was properly chosen, bed rest was unnecessary for 53 the treatment of tuberculosis. The Tuberculosis Society of *Tuberculin i s an extract from culture of tubercle b a c i l l i . A small dose of t h i s extract i s injected i n the epidermis. A p o s i t i v e reaction to the tuberculin test (swelling and redness) some 24-36 hours aft e r i n j e c t i o n indicates that the i n d i v i d u a l has been infected. 7 S c o t l a n d Research Committee i n 1960 a l s o found t h a t i t was p o s s i b l e t o get over 98% of b a c t e r i o l o g i c a l c o n v e r s i o n from " p o s i t i v e " to "negative" f o r p a t i e n t s t r e a t e d f o r the f i r s t time 97 w i t h a p p r o p r i a t e chemotherapy. There are s u b s t a n t i a l d i f f e r e n c e s between p r o v i n c e s i n 48 the approach to treatment of t u b e r c u l o s i s . In some p r o v i n c e s , many newly diagnosed cases of t u b e r c u l o s i s are not h o s p i t a l i z e d but are t r e a t e d from the o u t s e t as o u t p a t i e n t s , w h i l e i n o t h e r s , i n i t i a l h o s p i t a l i z a t i o n i s almost always the r u l e . Furthermore, d u r a t i o n of h o s p i t a l stay d i f f e r s from p r o v i n c e to p r o v i n c e or even from i n s t i t u t i o n t o i n s t i t u t i o n . The p r o p o r t i o n of o u t p a t i e n t s w i t h new a c t i v e t u b e r c u l o s i s r e c e i v i n g chemotherapy who were never h o s p i t a l i z e d f o r the p e r i o d of treatment v a r i e d widely from 50% i n B r i t i s h Columbia to 5% i n 48 New Brunswick and the Northwest T e r r i t o r i e s i n 1972. The high economic, s o c i a l and p s y c h o l o g i c a l c o s t s of long term i n s t i t u t i o n a l c are, coupled with the e f f e c t i v e n e s s of chemo-therapy have prompted a search f o r treatment of t u b e r c u l o s i s i n a l t e r n a t i v e s e t t i n g s . S t u d i e s have been done, such as the one at the T u b e r c u l o s i s Chemotherapy Centre i n Madras, South I n d i a , 8 5 i n 1959, on the concurrent comparison of home and sanatorium treatment of pulmonary t u b e r c u l o s i s . P a t i e n t follow-ups i n d i c a t e d t h a t d e s p i t e the m anifest advantages of sanatorium care - r e s t , adequate d i e t , n u r s i n g and s u p e r v i s e d medicine t a k i n g - the r e s u l t s of ambulatory chemotherapy were comparable to those of sanatorium treatment. The study concluded t h a t i t would be a p p r o p r i a t e to t r e a t the m a j o r i t y of p a t i e n t s on an ambulatory b a s i s p r o v i d e d 8 t h a t adequate c l i n i c and back-up s e r v i c e s were e s t a b l i s h e d , such as s e r v i c e s of a p u b l i c h e a l t h nurse, s o c i a l worker, an e f f i c i e n t appointment system, r e l i a b l e l a b o r a t o r y examination, and w e l f a r e s e r v i c e s f o r s p e c i a l l y needy p a t i e n t s . Ambulatory treatment of t u b e r c u l o s i s has i t s c o n s t r a i n t s . The tendency today i s to r e l y on the e f f e c t i v e n e s s of chemotherapy and on the assumption t h a t because of t h i s , p a t i e n t s w i l l take the p r e s c r i b e d t a b l e t s d a i l y . That a l l p a t i e n t s on ambulatory treatment are not t a k i n g t h e i r chemotherapy as p r e s c r i b e d have been shown i n a number of s t u d i e s . A study on 164 p a t i e n t s who were dis c h a r g e d from sanatorium and had d i s c o n t i n u e d t h e i r t r e a t -ment i n 1964 found t h a t o n l y 55% had taken t h e i r drugs f o r the recommended t o t a l duration.''" S i x t y percent of those who d i d not complete the course d i d so on t h e i r own accord without any apparent reason. In an unpublished study on " P a t i e n t s ' Compliance to Long Term Chemotherapy" i n 1972, INH d e r i v a t i v e s i n u r i n e were t e s t e d among p a t i e n t s on chemotherapy i n s e v e r a l communities a c r o s s 25 Canada. R e s u l t s showed t h a t o n l y 76% of the 86 p a t i e n t s t e s t e d had p o s i t i v e u r i n e t e s t s . Nineteen (22%) out of the 86 p a t i e n t s were found t o possess 25% or more t a b l e t s i n excess of the p r e d i c t e d , i n d i c a t i n g t h a t they had not been t a k i n g medications r e g u l a r l y i n the weeks p r i o r t o the v i s i t . P a t i e n t s who were f r e q u e n t l y p r e d i c t e d t o be the high r i s k non-drug t a k e r s , f o r example, m i g r a t o r s , t r u c k d r i v e r s , a l c o h o l i c s and d i s t u r b e d p a t i e n t s , were the ones who missed appointments f r e q u e n t l y , disappeared from s u p e r v i s i o n , and who were on the 9 move a l l the time. A study conducted i n Cleveland, Ohio i n 1964 explored the c h a r a c t e r i s t i c s and r e h a b i l i t a t i o n problems of a metropolitan 8 0 tuberculosis population. On the basis of the findings, four subgroups of patients were i d e n t i f i e d : the "family i s o l a t e s , " the "anomic," the "otherwise i l l , " and the "normals." The "family i s o l a t e s , " which constituted 35% of the study group, were mostly people l i v i n g alone, which may be the by-product of i s o l a t i o n . The "anomic" (21%) were the ones without recognized norms who were l i v i n g apart from families, with i r r e g u l a r job records either by choice or due to chronic i l l n e s s e s other than tuberculosis. The "otherwise i l l " (30.5%) tend to be people who were older, l i v i n g alone, had a lower education l e v e l , and were unskilled labour or unemployed. These 3 groups were shown to be highly disadvantaged socio-economically, and to have esp e c i a l l y reduced potential for successful r e h a b i l i t a t i o n . The fourth group, the "normals," were also socio-economically disadvantaged, but had. much higher rates; of successful r e h a b i l i t a t i o n . The tuberculosis patient who i s also an al c o h o l i c presents a p a r t i c u l a r problem in that he i s l i k e l y to interrupt his chemo-therapy and therefore has a higher reactivation rate due to interrupted chemotherapy.^/28 However, these stereotypes were questioned by observations made by one researcher who revealed that the average age and race of people in his study were similar for those who completed therapy and for those who f a i l e d to do so. (40 years vs. 41 years; 79% black vs. 75% black).''"''" Alcoholism, skid road residence, 10 unemployment and lack of education were present both i n those completing therapy and i n those f a i l i n g therapy. Non-completers i n general were more l i k e l y to be unemployed and have a skid road residence. But the difference between the two groups were so i n s i g n i f i c a n t that the author suggested that for the i n d i v i d u a l patient, the factors of alcoholism, unemployment, housing con-ditions or lack of education cannot predict compliance. It i s recognized that apart from the length of treatment (18-24 months), many d i f f i c u l t i e s may arise to thwart the success-f u l completion of ambulatory chemotherapy of tuberculosis, such as inadequate supervision, lack of patient cooperation, adverse drug reactions, and lack of understanding about the disease and treatment process. Certainly, from the patient's common sense perspective, to stop medication or cancel a follow-up v i s i t when he i s f e e l i n g well i s l o g i c a l . Ensuring that patients on chemo-therapy complete t h e i r prescribed drug course should be one of the major objectives of a tuberculosis control program. 3. Tuberculosis Control i n B r i t i s h Columbia The Division of Tuberculosis Control of the P r o v i n c i a l Ministry of Health i s charged with the r e s p o n s i b i l i t y of corre-l a t i n g and d i r e c t i n g a l l phases of tuberculosis prevention and treatment i n B r i t i s h Columbia. The Division operates 7 0 beds i n Pearson Hospital for in-hospital tuberculosis care, three stationary chest c l i n i c s ( V i c t o r i a , Vancouver: Willow Chest C l i n i c and New Westminster), and t r a v e l l i n g c l i n i c s which v i s i t a l l parts of the province. I t provides a province-wide mass chest x-ray 11 and t u b e r c u l i n t e s t i n g program f o r s e l e c t e d groups and s u p e r v i s e s the d i s t r i b u t i o n of f r e e a n t i - t u b e r c u l o s i s drugs. The D i v i s i o n a l s o operates a P r o v i n c i a l Case R e g i s t r y which produces r e p o r t s and c a r r i e s out s t u d i e s r e s u l t i n g i n m o d i f i c a t i o n of phases of the work. I t a c t s i n a c o n s u l t a n t c a p a c i t y to both o f f i c i a l and v o l u n t a r y agencies i n a l l aspects of t u b e r c u l o s i s c o n t r o l and works very c l o s e l y w i t h the l o c a l h e a l t h a u t h o r i t i e s . The l a t t e r are p r i m a r i l y r e s p o n s i b l e f o r t u b e r c u l o s i s c o n t r o l i n t h e i r areas, but they r e l y on the D i v i s i o n f o r f a c i l i t i e s and d i r e c t i o n i n c a r r y i n g out t h e i r programs. In 1974, f o r the f i r s t time i n B r i t i s h Columbia, the number of new a c t i v e p a t i e n t s t r e a t e d as o u t p a t i e n t s exceeded those 94 t r e a t e d i n i n s t i t u t i o n s . Admission t o the h o s p i t a l f o r t r e a t -ment of t u b e r c u l o s i s i s a t the d i s c r e t i o n of the i n d i v i d u a l p h y s i c i a n s . I t i s u s u a l l y based on the degree of i l l n e s s and the i n f e c t i o u s n e s s of the case; the p h y s i c i a n ' s p e r c e p t i o n of the l i k e l i h o o d of compliance with treatment, and a number of s o c i o -economic f a c t o r s . Despite the trends towards ambulatory treatment, approximately 50% of the newly diagnosed p a t i e n t s w i t h a c t i v e t u b e r c u l o s i s i n the Greater Vancouver area are h o s p i t a l i z e d i n Pearson H o s p i t a l f o r 94 the i n i t i a l phase of treatment. Average l e n g t h of h o s p i t a l stay i s about 3 months. A f t e r d i s c h a r g e , p a t i e n t s are r e f e r r e d to chest c l i n i c s or h e a l t h u n i t s f o r at l e a s t lh years of follow-up. C l i n i c v i s i t s average once every 3 months. S p e c i a l circumstances such as a p a t i e n t suspected of u n r e l i a b l e drug-taking compliance, or a change i n d i s e a s e c o n d i t i o n may r e q u i r e v a r i a t i o n of c l i n i c 12 v i s i t s . Each c l i n i c v i s i t usually involved a b r i e f history taken by the c l i n i c nurse, chest x-ray, an interview with the physician who modifies the medication i f indicated, and laboratory tests, p a r t i c u l a r l y sputum examinations. One of the purposes of h o s p i t a l i z a t i o n i s the education of patients. Although there i s no organized education program as such at Pearson Hospital, h o s p i t a l i z a t i o n places patients i n an environment with ample opportunities to learn about tubercu-l o s i s through constant contact with health personnel and other informal media presentations. Upon admission, each patient i s given a booklet by Dr. W. Stead on tuberculosis written s p e c i f i -8 7 c a l l y for patients. The B.C. Christmas Seal Society has pamphlets and brochures on various aspects of the disease that are d i s t r i b u t e d to the patients regularly. Film presentations and occasional talks by a member of the health personnel are a l l part of an informal education program at Pearson Hospital. The remaining 50% of the patients with new active tuber-culosis are never hospitalized but are treated on an outpatient basis at the Willow Chest C l i n i c . Patients i n the c l i n i c receive information about tuberculosis primarily through t h e i r interviews with physicians and c l i n i c nurses. There are brochures and pamphlets on display by the Christmas Seal Society i n the waiting areas for the benefits of patients and t h e i r f amilies. In summary, tuberculosis i s declining i n Canada and i n B r i t i s h Columbia. There are more males than females with new active cases, and the rate increases with age for both sexes. The Native Indians and Eskimos have a much higher incidence rate 13 than the other Canadians. Although the disease i s p r a c t i c a l l y curable w i t h the i n t r o d u c t i o n of chemotherapy, there i s a r i s k of r e a c t i v a t i o n among those who do not complete the p r e s c r i b e d drug course. There are many reasons f o r patients'non-compliance with the treatment regimen, one of which i s the l a c k of i n f o r -mation on the disease and treatment process. P a t i e n t education i s t h e r e f o r e necessary to impart t h i s knowledge to p a t i e n t s i n order to encourage s u c c e s s f u l chemotherapy. Part 2: PATIENT EDUCATION The aims of h e a l t h education, as defined by the p a r t i c i p a n t s of the 1959 Technical Discussions on Health Education i n Geneva 61 were: "1) To ensure t h a t h e a l t h i s a valued community asset. 2) To equip people w i t h the knowledge, s k i l l s and a t t i t u d e s to enable them to solve t h e i r own he a l t h problems. 3) To promote the development and proper use of he a l t h s e r v i c e s . " In t h i s study, p a t i e n t education w i l l be defined as h e a l t h education w i t h a s p e c i f i c content d i r e c t e d to a s p e c i f i c group of people by v i r t u e of an i l l n e s s . I t i s the educ a t i o n a l ex-periences planned f o r the p a t i e n t by h e a l t h p r o f e s s i o n a l s as a component of h i s care. 14 1. P a t i e n t Education i n T u b e r c u l o s i s Knowledge of the v a r i o u s aspects of the d i s e a s e and comp-l i a n c e w i t h the medical regimen i s an e s s e n t i a l p a r t of the c o n t r o l of t u b e r c u l o s i s f o r the f o l l o w i n g p r a c t i c a l reasons: a. Understanding the r a t i o n a l e behind the use of p r e c a u t i o n a r y measures f o r the p r e v e n t i o n o f i n f e c t i o n o f o t h e r s : o v e r p r e c a u t i o n w i l l p l a c e an unnecessary s t r a i n on peoples' l i f e s t y l e s , and underprecaution or i n c o r r e c t p r e c a u t i o n s are hazardous to p u b l i c h e a l t h . b. Understanding the purposes o f treatment: the complete cure of t u b e r c u l o s i s i n v o l v e s the d e s t r u c t i o n of t u b e r c u l o s i s germs w i t h i n the t h a t the drug course be s t r i c t l y adhered t o f o r the complete 18-24 months. Bed r e s t and good n u t r i t i o n are secondary i n importance, c. Understanding the value of s p e c i a l t e s t s : sputum t e s t s and x-rays are e s s e n t i a l f o r mon i t o r i n g the treatment. The co n v e r s i o n o f sputum from p o s i t i v e to n egative i n d i c a t e s improvement i n the d i s e a s e . P a t i e n t e d u c a t i o n has a c r u c i a l r o l e t o p l a y i n these r e s p e c t s . The importance of educating p a t i e n t s about t u b e r c u l o s i s was recogn i z e d as e a r l y as 1904 when do c t o r s were urged t o seek the i n t e l l i g e n t c o o p e r a t i o n of t h e i r p a t i e n t s i n c a r r y i n g out, f o r a s u f f i c i e n t p e r i o d of time, the simple h y g i e n i c i n s t r u c t i o n s 20 which they would g i v e t o the p a t i e n t . As a p a r t of a d i s c u s s i o n body, That i s why i t i s v i t a l 15 of the treatment of tuberculosis i n 1946, the items which were 3 8 taught to the patients were outlined at length. Nurses, c l i n i c d irectors, and private physicians were urged to teach a l l suspected cases of tuberculosis about the disease as a means of i n t e r e s t i n g the patient i n continuing his follow-up care and thereby eliminating the avoidable misfortune of a late 52 diagnosis at some future time. In his addresses to a l l doctors and medical students, the need of giving the patient a complete understanding of his disease from the very beginning and during 51 the entire course of his i l l n e s s was stressed. The use of a u x i l l i a r y aides and personnel to reinforce 8 0 the teachings of the doctor was suggested i n 1962. The need for planned educational programs and for in-service educational program for a l l members of the therapeutic team: physicians, nurses, and s o c i a l workers, so that the coordinated program could be e f f e c t i v e were recommended by a number of writers over 73,72,96,9,12,89,104 the years. ' ' > ' ' > In his discussion of "Emotional Factors i n Tuberculosis" in 1948, Ludwig mentioned s p e c i f i c a l l y an in-service educational program to help understand the emotional problems of the chronically i l l . 6 ^ Although some of these recommendations may be outdated due to the use of modern chemotherapy for treatment of tubercu-l o s i s , the concepts they described are s t i l l applicable. This i s e s p e c i a l l y so in l i g h t of the reports on public knowledge and attitudes towards tuberculosis i n the 1970's which indicated that many segments of the population can s t i l l benefit from education i n tuberculosis. 2. P u b l i c Knowledge and A t t i t u d e Towards T u b e r c u l o s i s Reports on p u b l i c knowledge of and a t t i t u d e towards t u b e r -c u l o s i s have come t o v a r y i n g c o n c l u s i o n s . A study done i n Dundee on 240 people of s e l e c t e d age groups found t h a t t h e r e were marked d i f f e r e n c e s i n the knowledge and a t t i t u d e s between people under the age of 65 and those over 6 5 . 1 0 Older people knew l i t t l e and d i d l i t t l e about e a r l y d e t e c t i o n o f t u b e r c u l o s i s . The author s p e c u l a t e d t h a t the ignorance and complacency of t h i s age group may be a f a c t o r i n the p e r p e t u a t i o n of the d i s e a s e among them. I t was r e p o r t e d t h a t by 1975, t u b e r c u l o s i s was no longer f e a r e d i n the U n i t e d Kingdom.^ I t was widely known to be cu r a b l e with l i t t l e inconvenience t o the p a t i e n t , and i t c a r r i e d l i t t l e , i f any, s o c i a l stigma. However, a study conducted i n F o r s t e r Green H o s p i t a l i n B e l f a s t i n 1976 found t h a t f e a r and embarrassment s t i l l e x i s t e d i n some t u b e r c u l o u s p a t i e n t s b e f o r e 18 t h e i r d i s e a s e was e x p l a i n e d t o them. 3. Knowledge and Compliance The dynamics between knowledge of d i s e a s e and p a t i e n t compliance w i t h medical regimen has been a s u b j e c t of much con-t r o v e r s y . The t r a d i t i o n a l assumption t h a t e d u c a t i o n r e s u l t s i n c o r r e c t behaviour through the sequence c o n s i s t i n g of knowledge change, a t t i t u d e change and behaviour change i s being questioned by b e h a v i o u r a l s c i e n t i s t s . For i n s t a n c e , i t was concluded i n a review of the t h e o r i e s i n h e a l t h education i n 1968 t h a t behaviour change may and does occur without p r i o r knowledge and a t t i t u d e 8 8 change.' In f a c t , the author b e l i e v e d t h a t f r e q u e n t l y knowledge and attitude change i s a consequence rather than a cause of behaviour change. Hence, he believed educational programs should be directed towards change of behaviour rather than increase of patient knowledge. C o n f l i c t i n g results have been obtained by researchers on the relationship between knowledge of i l l n e s s and health behaviour Studies of diabetics suggest that control of the disease i s i n -30 101 2 versely related to knowledge, ' or at least unrelated, while a study of responses to premonitory symptoms of patients suffering from heart disease found that knowledge i t s e l f i s not a strong 59 motivational force. On the other hand, various p a r t i c i p a t i o n and u t i l i z a t i o n studies suggest that knowledge of i l l n e s s i s p o s i t i v e l y related to propensities to seek medical care or to p a r t i c i p a t e i n ex-3 78 92 102 perimental programs. ' ' ' It was found that knowledge about diabetes i n adult patients, presumably derived from phy-si c i a n s ' explanations, was p o s i t i v e l y correlated with the patients 103 satisfactory performance of therapeutic recommendations. Hochbaum concluded that patients who did not understand the substance and implications of medical advice would be unli k e l y 54 to follow i t . Doctor-patient interaction was observed i n an outpatient c l i n i c and i t was found that patients who were given more thorough explanations about t h e i r conditions cooperated somewhat more e f f e c t i v e l y with the physician and were more l i k e l y to accept completely the doctor's advice than were patients who 73 received very l i t t l e explanation. McKinley suggested that the knowledge of health and i l l n e s s 18 71 may be a c q u i r e d i n many ways. However, not a l l these ways w i l l assure the c o e x i s t e n c e of a t t i t u d e s g e n e r a l l y conducive to compliance w i t h medical a u t h o r i t y . Knowledge w i l l p r e d i c t u t i l i z a t i o n behaviour and/or compliance e f f e c t i v e l y only i n the absence of other m o t i v a t i o n . 4. Communication i n P a t i e n t Education One of the most f r e q u e n t l y i d e n t i f i e d f a c t o r s a f f e c t i n g p a t i e n t knowledge and compliance i s the communication process between p a t i e n t and p h y s i c i a n . The t r a n s m i s s i o n of i n f o r m a t i o n from p h y s i c i a n t o p a t i e n t a f f e c t s both the q u a l i t y of care and the course of treatment as p e r c e i v e d by the p a t i e n t s . C a r t w r i g h t found t h a t p r o f e s s i o n a l s and white c o l l a r workers obtained most of t h e i r i n f o r m a t i o n about i l l n e s s by a s k i n g t h e i r 13 p h y s i c i a n s and nurses d i r e c t q u e s t i o n s . In c o n t r a s t , the i n f o r m a t i o n which s k i l l e d and u n s k i l l e d workers r e c e i v e d r e s u l t e d from a p a s s i v e process i n which they were gi v e n i n f o r m a t i o n w i t h -out asking; they a l s o tend to r e c e i v e l e s s i n f o r m a t i o n . Despite t h e i r r e l u c t a n c e t o request i n f o r m a t i o n , working c l a s s p a t i e n t s d i f f e r e d l i t t l e from upper c l a s s p a t i e n t s i n t h e i r d e s i r e f o r i n f o r m a t i o n . 91 A medical care study was conducted i n New York i n 1965. I t was r e p o r t e d t h a t 90% of the respondents agreed t h a t they were w i l l i n g t o do a b s o l u t e l y e v e r y t h i n g the d o c t o r a d v i s e d , although t h e r e was a strong d e s i r e to be informed by the doctor as to "what was going to happen." The m a j o r i t y of a l l H o s p i t a -l i z e d p a t i e n t s p a r t i c i p a t i n g i n a review i n the same year 19 believed that a "good explanation" of i l l n e s s constituted one 8 3 of the most important q u a l i t i e s of a "good doctor." Several studies have demonstrated that patients tend to be more d i s s a t i s f i e d with the sc a r c i t y of information they re-ceive from t h e i r physician than about any other aspect of medical care, and that they viewed the transmission of information as a 13 highly important feature of the doctor-patient relationship. ' 70,82,63 Compliance i s closely related to the quality of information physicians provide. For example, a negative c o r r e l a t i o n was 20 found between compliance and "non-reciprocal information." That i s , when doctors provide disproportionately l i t t l e informa-t i o n as compared to what i s expected by the patients, the patients tend to comply less with t h e i r doctors' order. Compliance of mothers in following medical advice concerning t h e i r children was found to be p o s i t i v e l y correlated with the extent to which a physician f u l f i l l e d t h e i r expectations of information and 3 6 provided a detailed explanation about t h e i r children's i l l n e s s . It was also found that i f communication from medical personnel was ambiguous or i f the patient received c o n f l i c t i n g communication from several medical sources, the chances of his accepting his i l l n e s s were reduced. There are many i d e n t i f i e d b a r r i e r s to doctor-patient i n t e r -7 6 action such as deficiency i n patients' vocabulary, physician's 73 underestimation of patients' knowledge; and patients' feelings of moral obligation not to take the time of nurses and physicians 8 3 away from other possibly "sicker" patients. In a questionnaire survey conducted among i n t e r n i s t s , 20 physicians claimed to spend a f a i r l y large portion of t h e i r 2 6 time - 19% on the average - i n health education. Another study showed that physicians believed patient education i s t h e i r t h i r d most frequent single c l i n i c a l a c t i v i t y i n o f f i c e practice. Pediatricians expressed opinions favouring the delegation to a l l i e d health workers of tasks related to information seeking, 105 information giving and counselling. These studies have im-portant implications on the e f f e c t i v e organization of patient education programs. Information theories provide many operational d e f i n i t i o n s of information which can be applied to doctor-patient r e l a t i o n -ships. One of these d e f i n i t i o n s i s "...that which removes or 4 reduces uncertainty." The philosophy of health care today i s such that the patient i s no longer the passive recipient of medical and nursing ministration, but an active participant i n the scheme of his treatment. As patients vary i n t h e i r learning needs, rates, a b i l i t i e s , and motivation, education methods need to be f l e x i b l e and i n d i v i d u a l i s t i c . The learning experience that has the most meaning to the patient i n terms of his percep-ti o n w i l l determine how he responds to his health care procedures. A conscious e f f o r t has to be made on the part of health profes-sionals to promote good communication so that the unspoken questions can be anticipated and answered. 5. Patient Education Programs Planned programs of education for patients have been shown to be far superior than inc i d e n t a l i n s t r u c t i o n for patients i n tuberculosis. This concept has; been extended to the i n c l u s i o n of patients' family i n the education programs with the objectives of increasing understanding and support to patients by t h e i r families, and better u t i l i z a t i o n of health personnel time by 6 0 using group teaching. Families were the most i n f l u e n t i a l reference group on peoples' health behaviour, both in prevention and compliance, as they were the patients' most s p e c i f i c and 92 24 immediate environment. ' Also, since families of patients faced similar emotional and possibly f i n a n c i a l concerns, a mutual aid network can be established i n d i r e c t l y through an organized education program. In summary, patient education has been i d e n t i f i e d by c l i n i c i a n s and health educators since the 1900's as an important aspect of tuberculosis treatment. Although researchers have come to varying conclusions regarding patient knowledge of the disease and t h e i r compliance with the treatment regimen, i t i s generally agreed that the communication process between physicians and patients affectsthe quality of care and the course of t r e a t -ment, es p e c i a l l y as perceived by the patients. Also, patients tend to comply less with doctors' orders when the information received does not meet with t h e i r expectation. Several planned patient education programs have been reported as successful i n f a c i l i t a t i n g the presentation of disease information i n an organized and e f f i c i e n t manner, and to encourage compliance of the medical regimen. Chapter 2 METHODOLOGY In B r i t i s h Columbia, as i n Canada i n general, tuberculosis patients are either hospitalized or treated on an ambulatory basis. A complete cost-analysis comparing the two types of t r e a t -ment i s s t i l l to be done. One of the benefits which should be taken into consideration i n such an evaluation i s patient edu-cation: how much patient education takes place under each of the two treatment settings (hospital versus ambulatory treatment)? The present study i s aimed at answering t h i s question. A prospective study comparing how much knowledge and a t t i -tude change occur under each treatment setting w i l l probably provide the best answer. However, due to the lack of time and resources, a less expensive approach was chosen which took advan-tage of the p a r t i c u l a r s i t u a t i o n of the Willow Chest C l i n i c . Willow Chest C l i n i c was attended by three types of patients with respiratory disease. The f i r s t group, which would be c a l l e d (H), were tuberculosis patients who had been hospitalized at the beginning of t h e i r treatment and were v i s i t i n g the c l i n i c for follow-up once every three months upon discharge from the hospi t a l . The second group, which would be c a l l e d (H) , were tuberculosis patients who were treated once every three months also on an outpatients basis since the diagnosis of t h e i r disease. 22 23 The t h i r d group, which would be c a l l e d (C), were p a t i e n t s a t t e n d i n g the c l i n i c f o r r e s p i r a t o r y problems other than t u b e r c u l o s i s and who had no p r e v i o u s r e c o r d of t u b e r c u l o s i s . The f i r s t two groups served as the two Study groups, and the n o n - t u b e r c u l o s i s group served as a C o n t r o l group intended to r e p r e s e n t the l e v e l of education of the t u b e r c u l o s i s p a t i e n t s p r i o r t o t h e i r treatment. . A c r o s s - s e c t i o n a l study was designed to compare the knowledge of the t h r e e groups and the a t t i t u d e of the two study groups towards the p a t i e n t e d u c a t i o n process. In t h i s study, knowledge was regarded as the product of education, and p a t i e n t s a t i s f a c t i o n w i t h the way the d i s e a s e i n f o r m a t i o n was imparted was c o n s i d e r e d as an i n d i c a t i o n of a good educ a t i o n p r o c e s s . An i n t e r v i e w was used to measure knowledge and s a t i s f a c t i o n of the p a t i e n t s d u r i n g t h e i r v i s i t s to the c l i n i c . 1. O b j e c t i v e T h i s study was designed to i d e n t i f y which one of the two treatment s e t t i n g s p r o v i d e d b e t t e r p a t i e n t e d u c a t i o n . S p e c i f i -c a l l y , the study was expected to answer the f o l l o w i n g q u e s t i o n s : a. Is p a t i e n t e d u c a t i o n t a k i n g p l a c e d u r i n g the treatment f o r t u b e r c u l o s i s i n e i t h e r c l i n i c a l s e t t i n g ? A com-p a r i s o n of the Study groups' and the C o n t r o l group's knowledge should provides some i n d i c a t i o n . b. Is there more p a t i e n t education t a k i n g p l a c e i n one of the two s e t t i n g s ? I t c o u l d be expected t h a t h o s p i t a l i z a t i o n p r o v i d e more e d u c a t i o n a l oppor-t u n i t i e s than c l i n i c . c. Is patient s a t i s f a c t i o n higher i n one of the two settings? 2. Sampling It i s a po l i c y of the Divis i o n of Tuberculosis Control to have regular patient follow-ups for each patient with new active tuberculosis at Willow Chest C l i n i c approximately once every three months. By scheduling the interviewing time for one and a half months, and beginning sampling on June 1, 1976 u n t i l the desired sample size was obtained, half of the t o t a l number of patients with new active tuberculosis were interviewed aft e r t h e i r regular c l i n i c appointments (N=352, %N-176). Analysis of the past years' s t a t i s t i c s showed that approximately half of the 176 c l i n i c patients would have been hospitalized at the 94 i n i t i a l phase of t h e i r treatment. A Control group of similar number was selected among the people who were attending Willow Chest C l i n i c for other respiratory problems and who did not have a record of tuberculosis. By matching as many known variables as possible among the Study and Control groups: age, sex, marital status, education and ethnic o r i g i n , and c o n t r o l l i n g for some of the other variables that could influence the response of the groups, the Control group was intended to present as close a socio-economic and demographic picture of the Study groups, p r i o r to t h e i r exposure to patient education,as possible. One might hope that t h e i r knowledge l e v e l would therefore represent the knowledge of the patients p r i o r to t h e i r exposure to patient education. It i s recognized that there are probably biases of p r e - s e l e c t i o n between the H o s p i t a l i z e d and N o n - H o s p i t a l i z e d groups as there are many f a c t o r s e n t e r i n g i n t o the p h y s i c i a n s ' d e c i s i o n on the i n i t i a l admission of the p a t i e n t s . F i g u r e I: P o p u l a t i o n Sampling P o p u l a t i o n Sampling Study P o p u l a t i o n New A c t i v e T u b e r c u l o s i s P a t i e n t s (352) Systematic Sampling Sample (176) H o s p i t a l i z e d P a t i e n t s (86). C l i n i c P a t i e n t s (90) Non-Response| (13) I n t e r -viewed (73) C o n t r o l P o p u l a t i o n Non-Tuberculosis P a t i e n t s (1454) I n t e r -viewed (86) T jNon-Response ( 4.) Matching Interviewed (162) I H 73 H = 86 C = 162 26 3. Questionnaire Through l i t e r a t u r e review and consultation with various people with expertise i n tuberculosis, questionnaire design and research methods, a draft questionnaire was designed. Modifi-cations were made subsequent to pretests on both Hospital and C l i n i c patients i n the spring of 1976. Part I consisted of questions aimed at testing patients' knowledge on: (a) Sources of disease information. (b) Cause, course and development of the disease. (c) Diagnostic tests and prevention for tuberculosis. (d) Treatment of tuberculosis. Part II consisted of questions aimed at finding out patients' attitude towards disease information: (a) t h e i r expectations (b) rating of t h e i r own knowledge (c) perception of how information was communicated (d) s a t i s f a c t i o n / d i s s a t i s f a c t i o n with information communication (e) preference for source of information (f) s a t i s f a c t i o n / d i s s a t i s f a c t i o n with treatment service. Only the Study groups were administered Part II of the questionnaire. Scores were assigned to questions on Part I according to t h e i r importance as part of patients' knowledge. Correct answers were a l l o t t e d either 2, 4 or 6 points, and incorrect answers were scored negatively. Subscore 1 was in c l u s i v e of a l l questions on the cause, course and development of the disease. Subscore 2 was 27 on the diagnostic tests and preventive measures. Subscore 3 was on the various aspects of the treatment. Total score was the sum of the 3 subscores, the highest possible score being 76 points. A copy of the complete questionnaire and the scoring system i s shown i n Appendix A. 4. Interviews Since the study involved the request of information from patients, as well as access to t h e i r medical records, approval was sought, and obtained from the Director of the B r i t i s h Columbia Division of Tuberculosis Control, and the Faculty of Medicine Screening Committee of the University of B r i t i s h Columbia. A patient informed consent form was attached to the front of the questionnaire, and patients' rights to refuse information or to withdraw from the study were explained c l e a r l y to them p r i o r to the interview. During the month of June and the f i r s t half of July, 1976 patient interviews were conducted at the Willow Chest C l i n i c by the writer. One hundred and seventy six patients diagnosed as new active tuberculosis age 10 and over of both sexes were expected. They a l l had appointment times sent out to them by Willow Chest C l i n i c three weeks p r i o r to c l i n i c time, and were free to contact the c l i n i c should the time be inconvenient. Patients who had broken appointments were contacted by the c l i n i c to ensure that they would come in at a l a t e r date. Interview time averaged 13 minutes for Part I, and about 20 minutes for both Part I and Part I I . When an interpreter was 2 8 required, the interviewing time was considerably longer. Inter-viewing pace was determined by the patients so that they did not f e e l that they were being rushed through the answers, or unneces-s a r i l y detained. The 176 patients i n the Control group were interviewed under similar circumstances. The nursing and medical s t a f f , as well as the patients attending the Willow Chest C l i n i c , were a l l extremely cooperative, which f a c i l i t a t e d the smooth progress of the interviewing part of the data c o l l e c t i o n . The nursing s t a f f would mention the i n t e r -view to the patients at the beginning of t h e i r appointments, and reminded them i n case they forgot a f t e r t h e i r medical interviews with the doctors. The c l i n i c doctors were aware of the objectives of the study. As mentioned before, only one person out of the 321 interviewed had refused to answer any of the questions. Most of the others were more than happy to volunteer information. Responses to the questionnaire were coded and analyzed by computer. 5. Analysis The study involved a comparison between Study and Control populations and within the Study populations themselves. The S t a t i s t i c a l Package for Social Science (SPSS) program was used for analysis. The variables age, sex, education, marital status and ethnic o r i g i n of the Study and Control groups were cross-tabulated. 2 X tests were used to determine the comparability of the demographic structure of the three groups. The answers for each question were cross-tabulated against the three groups. Two-way analysis of variance was performed on the t o t a l and subscores on knowledge with respect to the three groups by age, sex, educational l e v e l and ethnic o r i g i n . Analysis of co-variance was performed on the t o t a l and subscores on knowledge with respect to age, and with respect to the duration of treatment. Chapter 3 RESULTS 1. Demographic Structure of the Study and Control Groups Of the 176 patients chosen for the study, 86 had been hospitalized at Pearson Hospital for tuberculosis after t h e i r diagnosis, and 90 had been receiving t h e i r treatments from Willow Chest C l i n i c since diagnosis. Thus the r a t i o of (H) to (H) was 49 : 51. The matching of the Study and Control groups proved to be an extremely d i f f i c u l t task since the Study groups were rather unique i n t h e i r age, education and ethnic o r i g i n combi-nation. Because of t h i s , as well as the need to wait for some of the patients with previously cancelled and/or broken appoint-ments to return to the c l i n i c , interviewing time was extended by three weeks. Toward the end of the 9th week, there were 159 patients i n the Study groups interviewed, with 17 non-response (9.7%), and 162 i n the Control group with no non-response. Table 1 gives a d i s t r i b u t i o n of the three groups according to age, sex, marital status, education, ethnic o r i g i n and duration of treatment. A l l Standard Deviation Estimates r e f e r r i n g to the Hospitalized and Non-Hospitalized Study groups i n the text had been corrected by the F i n i t e Population Correction. The d i s t r i b u t i o n of age, sex, education and ethnic o r i g i n 30 Table 1. Demographic S t r u c t u r e o f the Study and C o n t r o l Groups H H C T o t a l :(i) AGE 10-39 40-59 60-70+ 28 (38. 28 (38. 17 (23. 4) 4) 3) 39 (45. 22 (25. 25 (29. 3) 6) 1) 56 (34. 60 (37. 46 (28. 6) 0) 4) 123(38. 110 (34. 88 (27. 3) 3) 4) ( i i ) SEX Male Female 43 (58. 30 (41. 9) 1) 39 (45. 4 7 (54. 3) 7) 92 (56. 70 (43. 8) 2) 174 (54. 147(45. 2) 8) ( i i i ) MARITAL STATUS S i n g l e M a r r i e d 36 (49. 37 (50. 3) 6) 28 (32. 58 (67. 6) 4) 50 (30. 112 (69. 9) 1) 114 (35. 207 (64. 5) 4) (iv) EDUCATION None or P u b l i c School 29 (39. 7) 38 (44. 2) 46 (28. 4) 113(35. 2) High School 33 (45. 2) 28(32. 6) 68 (42. 0) • 129 (40. 2) C o l l e g e 11 (15. 1) 20 (23. 3) 48 (29. 6) 79 (24 . 6) (v) ETHNIC ORIGIN Caucasian Chinese Others 39 (53. 20 (27. 14 (19. 4) 4) 2) 33 (38. 31 (36. 22 (25. 4) 0) 6) 80 (49. 56 (34. 26 (16. 4) 6) 0) 152 (47. 107 (33. 62 (19. 4) 3) 3) ( i n c l . n a t i v e & E. Indian) (vi) DURATION OF TREATMENT 1-3 mo. 4-12 mo. 7-12 mo. K 1.4) 27 (37. 0) 45(61.6) 21 (24.4) 33 (38.4) 32 (37.2) 22(13.8) 60(37.7) 77 (48.4) (i) p=0.296 ( i i ) p=0.149 ( i i i ) p=0.010 (iv) p=0.180 (v) p=0.210 (vi) p=0.000 32 were s t a t i s t i c a l l y similar among the Study and Control groups. There was a s i g n i f i c a n t l y higher proportion of "Singles" among the Hospitalized groups than the Non-Hospitalized and the Control groups. 49.3% (+ 4.1%)* of the (H) was Single, as compared to 32.6% (+ 3.5%) i n (H) and 30% (+ 3.6%) i n (C), p=0.010. In comparing the duration of treatment since diagnosis at the time of interview, a s i g n i f i c a n t v a r i a t i o n was observed among the two study groups. There was a higher concentration of people (61.6% + 4%) i n the Hospitalized group who had more than 12 months of treatment. The non-response rates d i f f e r e d among the groups. There was no non-response among the Control group. Of the 17 non-responses, 13 were from the (H) representing 15% (+ 2.9%) of the Hospitalized group, and 4 were from the (H) representing 4.6% (+ 1.6%) of that group. Of the 13 people, one person refused to be interviewed; one could not be interviewed due to a language barri e r ; three of the older patients were senile and incoherent; two were i n a heavily intoxicated state and could not be i n t e r -viewed; two moved away to another c i t y ; two were away for an extended period; and one person could not be located. Of the four non-responses in the Non-Hospitalized group, two could not be located; one person could not be interviewed due to language problems; and one person died from non-tuberculosis cause p r i o r to appointment time. The d i s t r i b u t i o n of the non-respondents of the two Study groups according to age, sex, marital status and ethnic o r i g i n i s shown i n Appendix B, Table B l . *Number i n bracket represents standard deviation of the mean. 3 3 The Study groups were c h a r a c t e r i z e d by a l a r g e p r o p o r t i o n of people whose mother-tongue was not E n g l i s h , and whose mastery of the E n g l i s h language presented some problems f o r the i n t e r -viewer. Where p o s s i b l e , the q u e s t i o n n a i r e was administered i n Chinese or through the use of an i n t e r p r e t e r , u s u a l l y a f r i e n d or r e l a t i v e accompanying the p a t i e n t . Among the H o s p i t a l i z e d group, 11 (15%,+ 2.9%) out of the 73 i n t e r v i e w s were conducted i n another language. One i n t e r v i e w had t o be c l a s s i f i e d as a non-response due to the n o n - a v a i l a b i l i t y of an i n t e r p r e t e r . Of the 8 6 i n t e r v i e w s among the N o n - H o s p i t a l i z e d , 16 (18.6%,+ 2.9%) were i n t e r v i e w e d i n Chinese or another language. Only 14 (8.6%,+ 2.2%) out of the 162 among the C o n t r o l group r e q u i r e d a s s i s t a n c e i n language. 2. P a t i e n t Knowledge Pa r t I of the q u e s t i o n n a i r e was designed t o determine the extent of the p a t i e n t ' s knowledge of the d i s e a s e . The answers to each q u e s t i o n by the three groups were recorded t o t r y to i n d i c a t e the p r e c i s e areas of p a t i e n t knowledge or d e f i c i e n c y . A. Cause of T u b e r c u l o s i s The p r o p o r t i o n s of people among the th r e e groups who knew t h a t t u b e r c u l o s i s i s a d i s e a s e caused by the i n f e c t i o n of the germ Tubercle B a c i l l u s were: (H):'l5.1% (+ 2.9%); (H):12.8% (+2.5%); and (C):16.7% (+ 2.9%). A c o n s i d e r a b l e p r o p o r t i o n from a l l three groups claimed t h a t they d i d not know the answer: (H): 39.7% (+ 4%); (H); 51.2% (+ 3.8%) and (C):28.4% (+ 3.5%). Others . 34 a t t r i b u t e d the cause of t u b e r c u l o s i s to socio-economic f a c t o r s , run-down c o n d i t i o n , o l d age, smoking and p o l l u t i o n . The o v e r a l l s i g n i f i c a n c e l e v e l f o r t h i s item i s p=0.230. (Table 2.1) Table 2.1 P a t i e n t Knowledge: Cause of Tuberculosis Q. 4 What do you t h i n k i s the major cause of t.b.? H H C T o t a l t.b. germs 11(15. 1) 11 (12. 8) 27 (16. 7) 49 (15.3) soc.-ec. f a c t o r s 17 (23. 3) 10 (11. 6) 39 (24. 1) 66 (20. 6) d i f f . r e s i s t . 11 (15. 1) 8 ( 9 . 3) 26 (16. 0) 45 (14.8) h e r e d i t y , age, smoking 5 ( 6. 8) 13 (15. 1) 24 (14. 8) 42 (13.1) don 11 know 29 (39. 7) 44 (51. 2) 46 (28. 4) 119(37.1) p-0.230 B. Inf e c t i o u s n e s s and Mode of Disease Transmission Over 75% of people i n a l l three groups recognized t h a t t u b e r c u l o s i s i s i n f e c t i o u s i n s p i t e of t h e i r apparent ignorance of the germ as being the cause of the disease. This may give r i s e to some concern r e l a t i n g t o the understanding of the pre-cautionary means necessary to prevent f u r t h e r i n f e c t i o n t o others. This concern was confirmed by the answers to the questions on disease t r a n s m i s s i o n . Only 50% (+ 3.8%) of the (H) group r e a l i z e d t h a t the air-borne t u b e r c u l o s i s germs can be spread to other people by e x h a l i n g , coughing or sneezing. The proportions of people i n a l l three groups who r e a l i z e d that t u b e r c u l o s i s infection was acquired by i n h a l i n g a i r c o n t a i n i n g l i v e germs were: 35 (H) : 58.9% (+ 4%); (H) : 38.4% (+ 3.6%); and .(C): 48.8% (+ 4.3%). (Table 2.2) Table 2.2 P a t i e n t Knowledge: I n f e c t i o u s n e s s and Mode of Disease Transmission H H C T o t a l Q. 5 Is t.b. i n f e c t i o u s ? b yes 65(89. 0) 65 (75.6) 138 (85.2) 268 (83.5) no 6( 8.2) 14(16.3) 16( 9.9) 36(11.2) don't know 2( 2.7) 7( 8.1) 8( 4.9) 17( 5.3) Q. 6 Do you know how t.b. germs get out of the body of a s i c k person? coughing & sneezing 55 (75.3) 43 (50.0) 94 (58. 0) 192 (59. 8) don't know 11(15.1) 33(38.4) 40(24.7) 84(26.2) other 7 ( 9. 6) 10 (11.6) 28(17.3) 45(14.0) Q. 7 Do you know how people get t.b. germs i n t o t h e i r bodies? b r e a t h i n g 43(58.9) 33(38.4) 79(48.8) 155(48.3) don't know 12 (16.4) 40 (46.5) 42 (25. 9) 94 (29.3) other 18 (24.7) 13 (15.1) 41(25.3) 72 (22.4) (Q.5) p=0.197 (Q.6) p=0.215 (Q.7) p=0.001 C. Symptoms of T u b e r c u l o s i s 41.9% (+ 3.7%) of the (H) d i d not know the common symptoms of a c t i v e t u b e r c u l o s i s . The r e s u l t s of three groups showed an o v e r a l l s i g n i f i c a n c e l e v e l of p=0.039. 23% (+ 3.5%) of the (H) and 28.4% (+ 3.5%) of the (C) were ign o r a n t of symptoms such as f e v e r , weight l o s s , coughing and n i g h t sweat. (Table 2.3) 36 Table 2.3 Patient Knowledge: Symptoms of Tuberculosis H H C Total Q. 8 What are the common symptoms of active t.b.? Name any two. weight loss (1) 8(11.0) 11(12.8) 29(17.9) 48(15.0) fever, fatigue night sweat (2) 48(65.8) 39(45.3) 87(53.7) 174(54.2) don't know/none 17(23.3) 36(41.9) 46(28.4) 99(30.8) p=0.039 D. Risk of Development of Tuberculosis A l l i n f e c t i o n (primary or childhood infection) does not necessarily lead to an acute disease episode. S l i g h t l y over 50% of a l l three groups r e a l i z e d that people who have lower resistance, "run-down," are more susceptible to a breakdown of an e a r l i e r i n f e c t i o n : (H):58.9% (+4%); (H):55.8% (+ 3.8%); and (C):66.7% (+ 3.7%), p=0.203. (Table 2.4) A E. Course and Development of Tuberculosis The proportions of people i n the sample from the three groups who r e a l i z e d that tuberculosis germs can spread to other organs through the blood stream were: (H): 63% (+ 3.9%); (H): 50% (+ 3.8%); and (C):49.4% (+ 3.9%), p=0.054. 86.3% (+ 2.8%) of the Hospitalized group believed that people recover completely from tuberculosis. 92% (+ 2%) of (C) and 94.2% (+ 1.8%) of (H) recognized t h i s f a c t , p=0.490. 37 Table 2.4 Patient Knowledge: Risk of Development of Tuberculosis H H C Total Q. 9 Do you know why some people have t.b. germs i n th e i r bodies and not get sick with i t ? d i f f . r e s i s t , don't know/other 43 (58. 30 (41. 9) 1) 48 (55. 38 (44. 8) 2) 108 (66.7) 54 (33.3) 199 (62.0) 122 (38.0) Q.IO At what ages possible for to get t.b.? i s i t people a l l ages don't know other 60 (82. 6 ( 8. 7 ( 9 . 2) 2) 6) 68 (79. 11 (12. 7 ( 8 . 1) 8) 1) 112 (69.1) 17 (10.5) 33 (20.4) 240 (74.8) 34 (10.6) 47 (14.6) (Q.9) p=0.203 (Q. 10) p= :0. 048 The (H), (H) and (C) had 84 .9% ( + 3%) 82.7% (+ 2 .9%) and 69.8% (+ 3.5%) respectively of t h e i r sample who knew about the p o s s i b i l i t y of reac t i v a t i o n . The o v e r a l l significance l e v e l was p-0.015. (Table 2.5) F. Diagnostic Tests and Prevention of Tuberculosis The proportions of people i n the three groups who knew the purpose of the tuberculin test for the detection of tuberculosis i n f e c t i o n were: (H): 74% (+ 3.5%); (H):59.3% (+ 3.5%); (C):68.5% (+ 3.6%), p=0.130. Few within a l l three groups were aware of the use of the laboratory tests for the detection of tuberculosis germs i n 3 8 Table 2.5 Patient Knowledge: Course and Development of Tuberculosis H H C Total Q . l l Can t.b. spread from the lungs to other parts of the body? yes 46(63.0) 43(50.0) 80(49.4) 169(52.6) no 5( 6.8) 12(14.0) 34(21.0) 51(15.9) don't know 22(30.1) 31(36.0) 48(29.6) 101(31.5) Q.12 Do people usually recover from t.b. completely? yes 63(86.3) 81(94.2) 149(92.0) 293( 9.3) no 3( 4.1) 2( 2.3) 4( 2.5) 9( 2.8) don't know 7( 9.6) , 3( 3.5) 9 (. 5.6) 19 ( 5.9) Q.13 Is i t possible for people to have relapses? yes 62(84.9) 60(69.8) 134(82.7) 256(79.8) no 4( 5.5) 2( 2.3) 6( 3.7) 12 ( 3.7) don't know 7( 9.6) 24(27.9) 22(13.6) 53(16.5) (Q.ll) p=0.053 (Q.12) p=0.490 (Q.13) p=0.015 sputum/specimen. The proportion of "don't knows" were: (H): 76.7% (+ 3.5%); (H):89.5% (+ 2.2%); (C):92.6% ( + 2%), p=0.OO7. .  There was an apparent lack of knowledge of B.C.G. as a pre-ventive measure. The (H) group had 13.7% (+ 2.8%) people know-ledgeable of the term, (H) had 4.7% ( + 1.8%) and (C) 10.5% (+2.3%), p=0.138. (Table 2.6) 39 Table 2.6 P a t i e n t Knowledge: D i a g n o s t i c T e s t s and P r e v e n t i o n of T u b e r c u l o s i s E E C T o t a l Q.14 Do you know what the t u b e r c u l i n s k i n t e s t i s f o r ? d e t e c t germs 54 (74. 0) 51 (59. 3) 111 (68. 5) 216 (67. 3) don't know 19 (26. 0) 35(40. 7) 51(31. 5) 105 (32. 7) Q. 15 Could you t e l l me the two t e s t s t h a t are done t o d e t e r -mine i f a person's sputum/specimen i s p o s i t i v e or negative? c u l t u r e (1) 6 ( 8 . 2) 3 ( 3 . 5) 7 ( 4 . 3) 16 ( 5. 0) and smear (2) 11 (15. 1) 6 ( 7 . 0) 5( 3. 1) 22 ( 6. 9) don't know/other 56 (76. 7) 77 (89. 5) 150 (92. 6) 283 (88. 2) Q. 16 Do you know the name of the v a c c i n e a g a i n s t t.b. ? B • C . G • 10 (13. 7) 4 ( 4 . 7) 17X10. 5) 31( 9. 7) don't know/other 63(86. 3) 82 (95. 3) 145 (89. 5) 290 (90. 30 (Q.14) p=0.130 (Q.15) p=0.007 (Q.16) p=0.138 G. Treatment of T u b e r c u l o s i s There was a s i g n i f i c a n t d i f f e r e n c e between the Study and the C o n t r o l groups i n t h e i r understanding of med i c a t i o n as the one most important h a b i t f o r people w i t h t u b e r c u l o s i s t o f o l l o w : (H): 56.2% (+ 4.1%); (H): 55.8% (+ 4.4%) and (C): 13.6% (+ 2.7%), 4 0 p=0.000. The rest of the people interviewed s t i l l thought that fresh a i r , rest and general hygiene were the most important measures to observe. 38.4% ( + 3.9%) of the (H) group, 12.8% ( + 2.5%) of the (H) and 8.6% ( + 2.2%) of the (C) knew the names of the drugs, p=0.000. A s i g n i f i c a n t l y higher proportion from the Study groups than the Control group recognized the length of the treatment period as 18-24 months: (H): 87.7% (+2.7%), (H): 68.6% (+ 7.6%) and (C): 17.3% (+ 2.9%), p=0.001. Over 80% of both Study groups did admit to the necessity of continuing with medication even after they f e e l better, as opposed to 48.8% (+ 3.9%) of the Control group, p=0.0 00. In questioning what people thought the reasons were for the duration of the drug course, (Table 2.7) t h e i r reasons could be divided into 5 categories: 1) to k i l l germs 2) don't know, only do as the doctor says 3) to avoid getting i t again 4) to prevent spreading to others 5) so one doesn't have to go to hospital 17.8% (+ 3.2%) of (H), 11.6% (+ 2.8%) of (H) and 19.8% ( + 3.1%) of (C) stated "to k i l l germs" as the reason for the duration of the drug course. H. Sources of Disease Information People u t i l i z e d s i g n i f i c a n t l y d i f f e r e n t disease information sources before and after diagnosis of t h e i r i l l n e s s . The highest proportion of people in the Control group (38.3% + 3.8%) indicated that " l i b r a r y books, pamphlets and media" had provided them with 41 T a b l e 2 . 7 P a t i e n t K n o w l e d g e : T r e a t m e n t o f T u b e r c u l o s i s H H C T o t a l Q . 1 7 What do y o u t h i n k i s t h e f i r s t m o s t i m p o r -t a n t h a b i t f o r p e o p l e w i t h t . b . t o f o l l o w t o g e t b e t t e r ? d r u g s 4 1 ( 5 6 . 2 ) 4 8 ( 5 5 . 8 ) 2 2 ( 1 3 . 6 ) 1 1 1 ( 3 4 . 6 ) r e s t , f r e s h a i r 1 9 ) 2 6 . 0 ) 1 8 ( 2 0 . 9 ) 6 7 ( 4 1 . 4 ) 1 0 4 ( 3 2 . 4 ) h y g i e n e , n u t r i t i o n 5 ( 6 . 8 ) 8 ( 9 . 3 ) 1 8 ( 1 1 . 1 ) 31 ( 9 . 7 ) d o n ' t k n o w / o t h e r 8 ( 1 1 . 0 ) 1 2 ( 1 4 . 0 ) 5 5 ( 3 4 . 0 ) 7 5 ( 2 3 . 4 ) Q . 1 8 Do y o u know t h e names o f t w o o f t h e d r u g s t h a t p e o p l e t a k e f o r t . b . ? I N H , EMB R I F , PAS 28 ( 3 8 . 4 ) 1 1 ( 1 2 . 8 ) 14 ( 8 . 6 ) 53 ( 1 6 . 5 ) c o l o r , n u m b e r 2 ( 2 . 7 ) 9 ( 1 0 . 5 ) 4 ( 2 . 5 ) 1 5 ( 4 . 7 ) d o n ' t k n o w / o t h e r 4 3 ( 5 8 . 9 ) 6 6 ( 7 6 . 7 ) 1 4 4 ( 8 8 . 9 ) 2 5 3 ( 7 8 . 8 ) Q . 1 9 Do y o u know how l o n g a l t o g e t h e r a r e t h e y s u p p o s e d t o t a k e t h e d r u g s ? 1 8 - 2 4 m o . 6 4 ( 8 7 . 7 ) d o n ' t know 9 ( 1 2 . 3 ) o t h e r 0 ( 0 . 0 ) 5 9 ( 6 8 . 6) 28 ( 1 7 . 3 ) 1 5 1 ( 4 7 . 0 ) 2 2 ( 2 5 . 6 ) 114 ( 7 0 . 4 ) 1 4 5 ( 4 5 . 2 ) 5 ( 5 . 8 ) 2 0 ( 1 2 . 3 ) 2 5 ( 7 . 8 ) Q . 2 0 Do y o u f e e l i t i s n e c e s s a r y f o r t h e m t o c o n t i n u e w i t h t h e m e d i -c a t i o n e v e n a f t e r t h e y f e e l b e t t e r ? Why? y e s 6 0 ( 8 2 . 2 ) 6 9 ( 8 0 . 2 ) 7 9 ( 4 8 . 8 ) 2 0 8 ( 6 4 . 8 ) n o 5 ( 6 . 8 ) 3 ( 3 . 5 ) 1 1 ( 6 . 8 ) 19 ( 5 . 9 ) d o n ' t know 8 ( 1 1 . 0 ) 1 4 ( 1 6 . 3 ) 7 2 ( 4 4 . 4 ) 9 4 ( 2 9 . 3 ) ( Q . 1 7 ) p = 0 . 0 0 0 ( Q . 1 8 ) p = 0 . 0 0 0 ( Q . 1 9 ) p = 0 . 0 0 0 ( Q . 2 0 ) p = 0 . 0 0 0 i n f o r m a t i o n about t u b e r c u l o s i s , whereas approximately 50% of p a t i e n t s i n both (H) and (H) claimed t h a t the medical personnel had p r o v i d e d them wi t h i n f o r m a t i o n about the d i s e a s e , p=0.0 00. A l l t hree groups were uniform i n t h e i r c h o i ce o f the medical personnel as a source of i n f o r m a t i o n i f they wanted t o know more about the d i s e a s e , p=0.423. (Table 2.8) Table 2.8 P a t i e n t Knowledge: Sources of Disease Information H H C T o t a l Q. 1 Which of the f o l l o w i n g sources have p r o v i d e d you w i t h the i n f o r m a t i o n about t.b.? medical personnel 36(49.3) 38(44.2) 34(21.0) 108(33.6) f a m i l y , f r i e n d s 11(15.1) 25(29.1) 38(23.5) 74(23.1) books, pamphlets, 19(26.0) 11(12.8) 62(38.3) 92(28.7) media none 7 ( 9.6) 12(14. 0) 28 (17.3) 47 (14.6) Q. 2 Which sources would you use i f you want more information on t.b.? medical personnel 67(91.8) 73(84.9) 141(87.0) 281(87.5) family, friends 1( 1.4) 4( 4.3) 7( 4.3) 12( 3.7) both, pamphlets,media 2( 2.7) 5( 5.8) 11( 6.8) 18( 5.6) other t.b. patients 1( 1.4) 0( 0.0) 0.( 0.0) 1( 0.3) none 2( 2.7) 4( 4.7) 3( 1.9) 9( 2.8) (Q. 1) p=0.000 (Q. 2) p=0.423 I. A t t i t u d e s Towards the Disease In i n t e r p r e t i n g the r e s u l t s o f the answers t o the q u e s t i o n 43 "What do you think i s worst about having t.b.?",most of the answers f e l l into the categories interpreted as: physical d i s -comfort, treatment, f i n a n c i a l stress, s o c i a l stigma, spread of the disease, none or other. A high proportion of the sample population i n a l l three groups rated physical discomfort as being one of the worst e f f e c t s of tuberculosis: (H): 39.7% (+ 4%), (H): 25.6% (+ 3.3%) and (C):27.2% (+ 3.5%). 19.2% (+ 3.2%) of the (H) , . 15.1% (+ 2.6%) of the (H) and 3.7% (+ 1.5%) of the Control group f e l t that treatment was worst. Social stigma was of concern to 11% (+ 2.6%) of (H), 8.1% (+ 2%) of (H), and 6.8% .(+ 2%) of (C) , p=0.000. (Table 2.9) Table 2.9 Patient Knowledge: Attitude Towards the Disease E E C Total Q. 3 What do you think i s worst about having t.b.? physical discomfort 29 (39. .7) 22 (25. .6) 44 (27. .2) 95 (29. .6) treatment 14 (19. .2) 13 (15. .1) 6 ( 3. 7) 33 (10. .3) f i n a n c i a l stress 2 ( 2. • 7) 1 ( 1. 2) 5 ( 3. 1) 8 ( 2, .5) s o c i a l stigma 8 (11. .0) 7 ( 8. 1) 11 ( 6. • 8) 26 ( 8. 1) spread 5 ( 6. 8) 13 (15. .1) 29 (17. .9) 47 (14, .6) don't know/other . 5 ( 6. 8) 6 ( 7. 0) 35 (21. .6) 46 (14, .3) none 10 (13. .7) 24 (27. .9) 32 (19, .8) 66 (20, .6) p=0.000 44 3. P a t i e n t s ' A t t i t u d e s Towards Disease Information P a r t I I of the q u e s t i o n n a i r e recorded the v a r i o u s p a t i e n t s ' a t t i t u d e s t h a t were r e l a t e d to d i s e a s e i n f o r m a t i o n communication. A. P a t i e n t s ' Rating of T h e i r Own Knowledge The (H) and (H) p a t i e n t s were s i m i l a r i n t h e i r r a t i n g s of t h e i r knowledge of t u b e r c u l o s i s p r i o r to t h e i r d i s e a s e . 21.9% (+ 3.4%) of (H) and 17.4% (+ 2.9%) of (H) r a t e d t h e i r pre-d i s e a s e knowledge as "poor;" 20.5% (+ 3.3%) of (H) and 16.3% (+ 2.8%) of (H) r a t e d t h e i r s as " f a i r ; " and 5.5% (+ 1.9%) of (H) and 5.8% (+ 1.8%) c o n s i d e r e d t h e i r former l e v e l of knowledge as "good." The o v e r a l l s i g n i f i c a n c e l e v e l i s 0.729. The two Study groups were s i g n i f i c a n t l y d i f f e r e n t i n t h e i r p e r c e p t i o n of t h e i r i n c r e a s e i n knowledge as a r e s u l t of having the d i s e a s e . Higher p r o p o r t i o n among the (H) group: 37% (+ 3.9%) than the (H) group: 18.6% (+ 2.9%) c o n s i d e r e d t h a t they had l e a r n e d "a l o t " about t u b e r c u l o s i s s i n c e they were s i c k . 23.3% (+ 3.5%) of (H) and 18.6% (+ 3.0%) of (H) f e l t t h a t they had l e a r n e d "some," 34.2% (+ 3.9%) of (H) and 36.0% (+ 3.7%) of (H) f e l t they had l e a r n e d " a l i t t l e " on t u b e r c u l o s i s ; and 5.5% (+ 1.8%) of (H) and 25.6% (+ 3.3%) of (H) thought they had l e a r n e d "none at a l l . " The o v e r a l l s i g n i f i c a n c e i s 0.000. (Table 3.1) B. P e r c e p t i o n of How Disease Information was Communicated The Study groups f e l t t h a t "an e x p l a n a t i o n of t h e i r i l l n e s s was: 1) " o f f e r e d without ask i n g " (H): 64.4% (+ 3.9%), (H): 53.5% (+ 3 45 2) "asked and was given" (H):13.7% (+ 2.8%), (H):11.6% (+ 2.8%) And i f i n f o r m a t i o n was not g i v e n by the h e a l t h p e r s o n n e l , i t seemed t h a t i n the m a j o r i t y of cases, the p a t i e n t s d i d not request t h a t i n f o r m a t i o n e i t h e r : 3) "asked without given" (H): 2.7% (+ 1.3%), (H): 5.8% (+ 1.8%) 4) "not asked not given" (H) : 19.2% (+ 3.2%), (!) : 29.1% (+ 3.4%) 2 X t e s t i n d i c a t e d t h a t the o v e r a l l d i f f e r e n c e i s not s i g n i f i c a n t , p=0.340. Table 3.1 P a t i e n t A t t i t u d e : P a t i e n t s ' Rating of T h e i r Own Knowledge H H T o t a l Q. 1. How would you r a t e your own knowledge of t.b. b e f o r e you were s i c k i n terms o f : good f a i r poor none 4( 5.5) 15(20.5) 16(21.9) 38(52.1) 5( 5.8) 14 (16.3) 15 (17.4) 52 (60.5) 9( 5.7) 29(18.2) 31(19.5) 90(56.6) Q. 2. How much more about t.b. would you say you have l e a r n e d s i n c e you were s i c k i n terms o f : a l o t some a l i t t l e none at a l l 27(37.0) 16(18.6) 17(23.3) 16(18.6) 25(34.2) 31(36.0) 4 ( 5 . 5 ) 2 (25. 6) 43(27.0) 33(20.8) 56 (35.2) 2 (16.4) (Q. 1) p=0.729 (Q. 2) p=0.003 46 One hundred and t h i r t e e n people claimed t h a t they had received an e x p l a n a t i o n of t h e i r i l l n e s s . Of these, 57 were h o s p i t a l i z e d and 56 were not h o s p i t a l i z e d a f t e r d i a g n o s i s o f the d i s e a s e . On q u e s t i o n i n g them as to whether they understood the i n f o r m a t i o n or not, 84.3% (+ 3.4%) of (H), and 82.1% (+ 3.6%) of (H) claimed t h a t i t was presented i n such a way t h a t they understood i t . The most common reasons t h a t were given f o r why p a t i e n t s f a i l e d to understand the i n f o r m a t i o n were: 1) Lack of E n g l i s h . 2) Information was not gi v e n i n s u f f i c i e n t d e t a i l , o f t e n because p h y s i c i a n s were too busy. 3) Terms were too complicated f o r them to understand. The most common reasons f o r not r e q u e s t i n g an e x p l a n a t i o n were again the language d i f f i c u l t y , and t h a t p h y s i c i a n s were p e r c e i v e d t o be too busy, so t h a t p a t i e n t s d i d n ' t want to take up t h e i r time. There were, however, a few who were e i t h e r i n d i f f e r e n t , or f e l t t h a t they knew enough a l r e a d y . (Table 3.2) C. D e s i r e f o r Disease Information There was overwhelming agreement among the two groups t h a t p a t i e n t s should be t o l d e v e r y t h i n g about t h e i r i l l n e s s : (H): 91.8% (+ 2.5%), (H): 95.3% (+ 1.7%), p=0.653. (Table 3.3) D. S a t i s f a c t i o n / D i s s a t i s f a c t i o n w i t h Present Knowledge 82.2% (+ 3.2%) of the (H) p a t i e n t s were s a t i s f i e d w i t h t h e i r present knowledge whereas only 60.5% (+ 3.7%) of the (H) expressed s a t i s f a c t i o n , p=0.005. I t i s i n t e r e s t i n g t o note t h a t the two areas of g r e a t e s t concern t o 30% of a l l of the p a t i e n t s , as i n d i c a t e d by the 47 T a b l e 3 . 2 P a t i e n t A t t i t u d e : P e r c e p t i o n o f How D i s e a s e I n f o r m a t i o n w a s C o m m u n i c a t e d H H T o t a l Q. 3 Was a n e x p l a n a t i o n o f y o u r i l l n e s s : o f f e r e d w i t h o u t a s k i n g 47 ( 6 4 . 4 ) 46 ( 5 3 . 5 ) 93 ( 5 8 . 5 ) a s k e d , g i v e n 1 0 ( 1 3 . 7 ) 1 0 ( 1 1 . 6 ) 2 0 ( 1 2 . 6 ) a s k e d , n o t g i v e n 2 ( 2 . 7 ) 5 ( 5 . 8 ) 7 ( 4 . 4 ) n o t a s k e d , n o t g i v e n 1 4 ( 1 9 . 2 ) 2 5 ( 2 9 . 1 ) 3 9 ( 2 4 . 5 ) Q. 4 Do y o u f e e l t h a t t h e e x p l a n a t i o n w a s g i v e n i n a way t h a t y o u : u n d e r s t o o d n o t u n d e r s t o o d 4 8 ( 8 2 . 2 ) 4 6 ( 8 2 . 1 ) 9 4 ( 8 3 . 2 ) 9 ( 1 5 . 8 ) 1 0 ( 1 7 . 9 ) 1 9 ( 1 6 . 8 ) T o t a l 57 ( 5 0 . 4 ) 56 ( 4 9 . 6) 1 1 3 (100.0) (Q. 3) p = 0 . 3 4 0 (Q. 4) p = 0 . 0 0 2 T a b l e 3 . 3 P a t i e n t A t t i t u d e : D e s i r e f o r D i s e a s e I n f o r m a t i o n H H T o t a l Do y o u f e e l t h a t p a t i e n t s s h o u l d b e t o l d e v e r y t h i n g a b o u t t h e i r i l l n e s s ? y e s n o d o n ' t know 6 7 ( 9 1 . 8 ) 3 ( 4 . 1 ) 3 ( 4 . 1 ) 8 2 ( 9 5 , 2 ( 2 , 2 ( 2 , 3) 3) 3) 149 ( 9 3 . 7 ) 5 ( 3 . 1 ) 4 ( 3 . 1 ) p = 0 . 6 5 3 48 quest i o n s they asked, were: 1) The i n f e c t i o u s n e s s o f the d i s e a s e : "How dangerous are the p a t i e n t s t o t h e i r f a m i l i e s , e s p e c i a l l y c h i l d r e n ? Why are c h i l d r e n allowed i n the h o s p i t a l i f t u b e r c u l o s i s i s i n f e c t i o u s ? How i s t u b e r c u l o s i s spread t o other people? Is i t safe t o use the same household u t e n s i l s and f a c i l i t i e s ? " 2) The purpose o f the drugs: "How much does one have to take t o be completely cured? Why does i t take so long? Are there any s i d e e f f e c t s from t a k i n g such l a r g e q u a n t i t i e s of drugs? Is i t sa f e t o e x e r c i s e / t r a v e l w h ile a person i s on medication? Are there any p a r t i c u l a r kinds o f food one should not eat while on medication?" T h i s confirmed the s t a t i s t i c s on answers t o qu e s t i o n s 4, 5, 6, 7 and 2 0 i n P a r t I where i t was noted t h a t although over 80% of the p a t i e n t s r e a l i z e d t h a t t u b e r c u l o s i s was i n f e c t i o u s , they were i g n o r a n t about the e x i s t e n c e of the t u b e r c u l o s i s germs, u n c e r t a i n about the mode of t r a n s m i s s i o n , and t h e r e f o r e u n c l e a r about the purposes of the treatment. (Table 3.4) Table 3.4 P a t i e n t A t t i t u d e : S a t i s f a c t i o n / D i s s a t i s f a c t i o n w ith Present Knowledge H H T o t a l Q. 7 Are you s a t i s f i e d w i t h your present knowledge about t.b. or are there areas t h a t you would l i k e t o know more about? s a t i s f i e d not s a t i s f i e d 60(82.2) 52(60.5) 112(70.4) 13 (17.8) 34(39.5) 47 (29. 6) p =. 0.005 E. P r e f e r r e d Information Source Family p h y s i c i a n s and P u b l i c Health nurses were i n d i c a t e d as the two most common medical contacts t h a t p a t i e n t s would pre-f e r outside of t h e i r c l i n i c v i s i t s . (Table 3.5) Table 3.5 P a t i e n t A t t i t u d e : P r e f e r r e d Information Source H H T o t a l Q. 8 Would you p r e f e r t h a t your f a m i l y doctor d i s c u s s t.b. w i t h you? yes 36(49.3) 55(64.0) 91(57.2) no 34 (46. 6) 28 (32.6) 62 (39.0) don't know 3( 4.1) 3( 3.5) 6( 3.8) Q. 9 Would you p r e f e r that the p u b l i c h e a l t h nurse discuss t.b. w i t h you? yes 26(35.6) 38(44.2) 64(40.3) no 36 (49.3) 39 (45.3) 75 (47.2) don't know 11(15.1) 9(10.5) 20(12.6) (Q. 8) p=0.173 (Q. 9) p=0.468 F. Attitude Towards Treatment Services There was a highly s i g n i f i c a n t difference between the two Study groups i n t h e i r p o s i t i v e and negative attitude towards ho s p i t a l i z a t i o n , p=0.000. 86% (+ 2.9%) of the (H) patients f e l t favorably towards t h e i r h o s p i t a l i z a t i o n experience. They be-lieved that t h e i r disease was serious and hospital was better equipped to handle treatment. People were more l i k e l y to follow 50 medical regimen under supervision than they normally would. They learned about drugs and good health habits. Only 45% ( + 3.8%) of (H) believed that h o s p i t a l i z a t i o n could be b e n e f i c i a l . The re-maining people i n that group believed h o s p i t a l i z a t i o n may encourage unnecessary s o c i a l stigma by i s o l a t i n g tuberculosis patients. Tuberculosis was not perceived as a serious disease, and i t was better for people to lead a normal and active l i f e so that there would be no disruption to family and work. Over 90% (+1.7%) of both groups perceived regular c l i n i c check-ups as important. Fewer than 20% (+2.9%) of the (H) group and less than 24.4% (+ 3.2%) of the (H) found any inconvenience in r e l a t i o n to keeping t h e i r appointments, p=0.735. People who f a i l e d to see any reason for t h e i r c l i n i c appointment claimed that they were f e e l i n g well and found i t d i f f i c u l t to accept a l l the procedures that were associated with being sick - medication and tests. One previously hospitalized patient f e l t that they should have had him a l l checked out p r i o r to discharging him from the hospital rather than wasting his time coming back again and again. The one most common suggestion by the patients was the extension of c l i n i c hours beyond o f f i c e hours. Otherwise the c l i n i c i s c e n t r a l l y located and very accessible to the patients. There was no difference between (H) and (H) i n t h e i r a t t i -tude towards medication, p=0.741. Only about 5% (+ 1%) of the (H) and (H) groups combined f e l t that medication could be improved: 1) i n taste 2) shorter course 3) weekly medication as opposed to d a i l y dosage. (Table 3.6) ^ 51-Table 3.6 P a t i e n t A t t i t u d e : A t t i t u d e Towards Treatment S e r v i c e s H H T o t a l Q.10 Do you t h i n k i t i s b e n e f i c i a l f o r people w i t h t.b. to be h o s p i t a l i z e d ? yes 63(86.3) 39(45.3) 102(64.2) no 7 ( 9.6) 43 (50.0) 50 (31.4) don't know 3( 4.1) 4( 4.7) 7( 4.4) Q . l l Do you f e e l t h a t i t i s necessary f o r you to come i n r e g u l a r l y to the chest c l i n i c ? yes 66(90.4) 80(93.0) 146(91.8) no 5( 6.8) 5( 5.8) 10 ( 6.3) don't know 2 ( 2 . 7 ) 1 ( 1 . 2 ) 3 ( 1 . 9 ) Q.12 Is there anything you co u l d suggest t o make i t e a s i e r f o r you to atten d c l i n i c ? time 4(5.5) 4(4.7) 8(5.0) l o c a t i o n 2( 2.7) 2( 2.3) 4( 2.5) t r a n s p o r t a t i o n 2(2.7) 2(2.3) 4(2.5) co s t 3(4.1) 3(3.5) 6(3.8) none 59(80.8) 65(75.6) 124(78.0) don't know 0(0.0) 2(2.3) 2(1.3) other 3(4.1) 8(9.3) 11 (6.9) Q.13 Is there anything you c o u l d suggest t o make i t e a s i e r f o r you to take your medication? 69(94.5) 82 (95.3) 151 (95.0) 4(5.5) 4 (84.7) 8(5.0) yes no (Q.10) p-0.000 ( Q . l l ) p=0.735 (Q.12) p=0.740 (Q.13) p=0.433 52 4. Analysis of Scores A. Sample Scores The scores for the Hospitalized Group were consistently and s i g n i f i c a n t l y higher than both the Non-Hospitalized and the Control Groups, which were s t a t i s t i c a l l y indistinguishable. The only exception can be found i n subscore 3 with the (H) > (C). (Table 4.1) Table 4.1 Means and Standard Deviations of Scores by Samples (ANOVA with Tukey 1s Method of Multiple Contrasts)* Score/Group H 1 H 2 C 3 Mean Total Score Standard Deviation 42.73 20.16 1 29. 60 2 3.66 2 27.17 20.69 3 0. 001 Mean Subscore 1 Standard Deviation 26.79 76.85 1 > 17.52 18.98 2 21.22 17. 34 3 0. 001 Mean Subscore 2 Standard Deviation 3.95 2.79 1 >. 2. 67 2.52 2 3.02 2.59 •3 0. 004 Mean Subscore 3 Standard Deviation 12. 5.96 1 > 9.40 6.54 2 3.23 5.18 3 p: 0.000 A set of two-way analyses of variance on the t o t a l and sub-scores have been carried out with groups on the following: age, *Tukey's Method of Multiple Contrasts i s used i n Tables 4.1-4.5 53 sex, education and ethnic o r i g i n . The res u l t s are as follows: B. Age When age was divided into the three categories of "10-39," "40-59" and "60-70+", i t was found that there was no difference in scores between the "10-39" and "40-59" age groups. But the "6 0-70+" age group scored s i g n i f i c a n t l y lower i n a l l areas of knowledge of tuberculosis. The p value for the t o t a l and sub-scores respectively were: 0.002, 0.081, 0.026 and 0.000. No Group X Age interaction was found. (Table 4.2) Table 4.2 Means and Standard Deviations of Scores by Age Groups (Two-way ANOVA) Score/Age 10-39 1 40-59 2 60-70+ 3 Mean Total Score Standard Deviation 33.69 34.36 24.91 22.04 21.37 22.39 1 = 2 > 3 Mean Subscore 1 Standard Deviation 22.40 23.51 17.73 17.74 17.46 18.40 1 = 2 > 3 Mean Subscore 2 Standard Deviation 3.37 2.80 1 3.29 2.64 2.81 2.13 2 > 3 Mean Subscore 3 Standard Deviation 7. 93 7. 01 1 7.56 4.54 6.67 6.35 2 > 3 C. Sex There was no s i g n i f i c a n t difference between the sexes (except i n subscore 3). The p value for the t o t a l and 3 sub-scores were, respectively, 0.810, 0.451, 0.187 and 0.010. No Group X Sex interaction was found. (Table 4.3) Table 4.3 Means and Standard Deviations of Scores by Sex (Two-way ANOVA) 1 2 Score/Sex Male Female Mean Total Score 30.68 32.50 Standard Deviation 22.43 22.00 1 = 2 Mean Subscore 1 21.60 21.37 Standard Deviation 17.80 18.15 1 = 2 Mean Subscore 2 2.97 3.35 Standard Deviation 2.51 2.80 1 = 2 Mean Subscore 3 6.12 7.78 Standard Deviation 6.62 7.09 1 < 2 D. Education When the level s of education were defined as "None or Public School," "High School" and "College," scores increased s i g n i f i c a n t l y with the increase i n level s of education. The only exception was i n Subscore 3 where the scores of the "None 55 or "Public School" were sim i l a r to that of "High School." The p value for the t o t a l and subscores were a l l 0.000. No Group X Education int e r a c t i o n was found. (Table 4.4) Table 4.4 Means and Standard Deviations of Scores by Education (Two-way ANOVA) None or High Score/Education Public School School College 1 2 3 Mean Total Score 23.39 33.64 39.87 Standard Deviation 22.37 20.11 21.64 1 < 2 < 3 Mean Subscore 1 14.89 23.75 24.77 Standard Deviation 18.86 16.29 16.25 1 < 2 < 3 Mean Subscore 2 2.26 3.24 4.26 Standard Deviation 2.45 2.56 2.67 1 < 2 < 3 Mean Subscore 3 6.22 6.64 8.23 Standard Deviation 6.59 7.06 6.80 1 2 < 3 E. Ethnic Origin The ethnic origins of the Study and Control groups were categorized under: "Caucasian," "Chinese," "Native Indian," "East Indian" and "Other." It was found that "Native Indian" and "East Indian" scored s i g n i f i c a n t l y lower than the other ethnic groups i n the area of the cause, course and development of the disease, and the t o t a l scores. Scores of a l l ethnic groups were s i m i l a r f o r subscores 2 and 3. The p value f o r the t o t a l and subscores were: 0.006, 0.002, 0.232 and 0.301, r e s p e c t i v e l y . No Group X E t h n i c O r i g i n i n t e r a c t i o n was found. (Table 4.5) Table 4.5 Means and Standard D e v i a t i o n s of Scores by E t h n i c O r i g i n (Two-way ANOVA) Caucasian 1 Other 2 Chinese 3 Na t i v e Indian 4 East Indian 5 Mean T o t a l Score Standard D e v i a t i o n 35.87 22.14 1 32. 67 21. 68 2 30.05 21.41 3 2. 22.42 22.67 • 4 18.15 23.27 5 Mean Subscore 1 Standard D e v i a t i o n 24.61 17.26 1 22.70 18.73 2 21.10 17. 03 3 11. 92 16.32 4 fc t 8. 75 17.54 5 Mean Subscore 2 Standard D e v i a t i o n 3. 33 2.82 1 3. 38 2.48 2 2.97 2.52 3 1. 67 3.28 4 3.00 2.64 5 Mean Subscore 3 Standard D e v i a t i o n 7.93 7.35 1 6.58 6.38 2 5.97 6.46 3 8. 83 7. 35 4 6.40 7.96 5 By u s i n g decade median, a n a l y s i s o f co v a r i a n c e of the t o t a l and subscores on age i n the th r e e p o p u l a t i o n samples was done. The r e g r e s s i o n c o e f f i c i e n t f o r : t h e t o t a l score was -1.509, w i t h p at 0.023; and the 3 subscores were: -4.323, p=0.005; -0.540, p=0.008; and -1.120, p=0.000. Thus scores were s i g n i f i c a n t l y lower with the i n c r e a s e i n age. A n a l y s i s of cova r i a n c e a l s o showed t h a t the d u r a t i o n of 57 treatment at the time of interview did not have any l i n e a r relationship to the amount of knowledge that patients had, p: 0.791. Chapter 4 DISCUSSION The scores of the Hospitalized group on the three sections of Part I of the questionnaire: 1) the cause, course and development of the disease; 2) diagnostic tests and preventive measures; and 3) the various aspects of treatment of tuberculosis, were consistently higher than both the Non-Hospitalized and,the Control groups, and the differences were s t a t i s t i c a l l y s i g n i f i c a n t . The Non-Hospitalized and the Control groups had s i m i l a r scores except on the knowledge of the treatment of tuberculosis, where the Non-Hospitalized scored higher than the Control group. Several factors might have contributed to the difference in scores between the three groups. It i s possible that the hospital admission c r i t e r i a had formed a pre-selection process among the (H) and the (H) groups, contributing to the difference i n knowledge l e v e l . The i n d i v i d u a l physician's decision as to whether to admit a patient with new active tuberculosis upon diagnosis or not i s often based on three factors: "1) infectiousness of the patient and the danger he presents to those around, 2) assessment of the degree of co-operation which he i s l i k e l y to show; and 3) the degree of i l l n e s s . Closely connected with the f i r s t two are a variety of socio-4 8 economic factors." There was no evidence that the c r i t e r i a of 58 59 h o s p i t a l i z a t i o n has changed over the l a s t f i v e years. Biases could have been introduced i n the selection of the two Study groups. Due to time, resources and many other constraints, i t was not possible to do a random sampling of the two Study groups. Systematic sampling was carried out during a one and a half month period i n the summer on a l l those patients with new active tuberculosis attending Willow Chest C l i n i c . I t i s possible that there was a bias i n time in that the Study groups attending the c l i n i c i n the summer might not be representative of a l l patients attending the c l i n i c at other times of the year. Even though only the new active tuberculosis patients were included i n t h i s study, i t i s possible that, due to differences in record keeping methods and problems with the tra n s f e r r i n g of patient records between countries, some of the immigrants diag-nosed as new active cases were i n r e a l i t y reactivated cases. Therefore, some of t h e i r knowledge of tuberculosis may have been gained during former episodes of the disease i n another country. This could have contributed to the differences i n scores. Since i t was te c h n i c a l l y unfeasible to determine the patients' knowledge of tuberculosis p r i o r to t h e i r treatment either i n hospital or i n c l i n i c , a Control group was selected, assuming that they represented the Study groups p r i o r to t h e i r exposure to patient education. It i s recognized that possible biases might have been introduced. F i r s t l y , i t i s d i f f i c u l t for a Control group to be i d e n t i c a l to the Study groups as i t i s u n r e a l i s t i c i n working with human beings to match a l l known variables, not to 60 mention the unknown ones. Secondly, by virtue of these people attending a Chest C l i n i c , t h e i r chances of exposure to information about tuberculosis, such as glancing through pamphlets i n the waiting area or talking with other tuberculosis patients, might be greater than those of the average patient p r i o r to or at the time of the diagnosis of the disease. Differences i n the scores between the Study and Control groups might have been greater. 5.7% of the Study groups rated t h e i r pre-disease knowledge as "Good;" 18.2% as "Fair;" 19.5% as "Poor;" and 56.5% as "None." Based on observation, the scores of the Control group follow approximately a normal d i s t r i b u t i o n (Mean: 27.17, Standard Devi-ation: 20.69). When the proportions given by the Study groups in t h e i r self-assessment of t h e i r pre-disease knowledge are imposed on th i s normal d i s t r i b u t i o n , i t leads to the following score categories: "Good:" 60-74; "Fair:" 40-60; "Poor:" 30-40; and "None:" 30 and l e s s . At least two explanations may account for the above findings. The f i r s t might be that the Control group of non-tuberculosis patients had a better knowledge of tuberculosis (without exposure) to patient education) than the Study groups p r i o r to t h e i r disease. Even the people rated as "Poor" had a minimum of 30 points. Over 50% of the Study groups had scores below the category "Poor." This would support the theories on tuberculosis as a disease of 87 45 2 8 poverty and c u l t u r a l deprivation. ' ' On the other hand, another explanation of the discrepancies between the two knowledge rates may be that, as a r e s u l t of patient education, the Study groups r e a l i z e d how l i t t l e they had known about the disease before: t h i s may be supported by the fact 61 that over 75% of the Study groups rated t h e i r pre-disease know-ledge as "Poor" and "None." The Control group was not exposed to the patient education process. If the f i r s t explanation i s accepted, i . e . the Control group had a better knowledge of tuberculosis than the Study groups p r i o r to t h e i r disease, i t would imply that the differences i n knowledge scores between the (H) and (H) as shown in the study would probably be an accurate r e f l e c t i o n of t h e i r differences in knowledge. However, the differences i n knowledge scores between the (H) and (C), and (H) and (C), indicating the Study groups' gain i n knowledge since diagnosis of the disease, might be underestimations of t h e i r actual gain i n knowledge. If the second explanation i s accepted, i . e . the Study groups underestimated t h e i r pre-disease knowledge l e v e l , i t would imply that the differences i n knowledge scores between (H) and (H) would probably be an accurate r e f l e c t i o n of t h e i r differences i n knowledge. If the actual pre-disease knowledge of the Study groups were the same as the Control groups, the score differences would r e f l e c t the Study groups' actual gain i n knowledge r e s u l t i n g from patient education. On the other hand, i f the actual pre-disease scores of the Study groups were higher than the Control groups, i t would imply that the score differences were overestimations of Study groups' actual gain i n knowledge. Further studies under better controlled conditions w i l l be necessary to validate these findings. The non-response rate was 15% (+ 2.9%) among the (H), com-pared to 4.6% (+ 1.6%) of the (H). There was no non-respondents among the C o n t r o l group. A n a l y s i s i n d i c a t e d t h a t age, e t h n i c o r i g i n and education had s i g n i f i c a n t impact on the knowledge l e v e l s of the Study and C o n t r o l groups. 75% of the (H) non-respondents as compared t o 61% of the (H) non-respondents were i n the "10-39" and "40-59" age groups, which had s t a t i s t i c a l l y higher scores than the "60-7 0" age group. T h e i r a v a i l a b i l i t y f o r the i n t e r v i e w s c o u l d have changed the d i f f e r e n c e s i n scores between the three groups. As w e l l , 100% of the (H) non-respondents were "Chinese" and "others" compared t o 69% of the (H) non-respondents. T h e i r a v a i l a b i l i t y c o u l d have changed the d i f f e r e n c e s i n scores as w e l l . The education l e v e l of the non-respondents co u l d not be obtained. I t i s a f a c t o r t h a t c o u l d have i n f l u e n c e d the t o t a l scores i f the non-respondents were a v a i l a b l e . There was a higher p r o p o r t i o n of s i n g l e people among the H o s p i t a l i z e d group than the N o n - H o s p i t a l i z e d and C o n t r o l groups. A more e q u i t a b l e d i s t r i b u t i o n of s i n g l e versus married people might have i n f l u e n c e d the s c o r e s . P r e c a u t i o n s were taken, both i n the design of the q u e s t i o n -n a i r e and the i n t e r v i e w i n g process, to ensure t h a t the i n t e r v i e w e r was not aware of the h o s p i t a l i z a t i o n s t a t u s of the p a t i e n t s p r i o r t o , or d u r i n g , the i n t e r v i e w s . No d i r e c t q u e s t i o n s were asked r e g a r d i n g p r e v i o u s h o s p i t a l i z a t i o n , and medical r e c o r d s were analysed a f t e r the i n t e r v i e w s . However, there were a few occa-s i o n s when p a t i e n t s v o l u n t e e r e d i n f o r m a t i o n and made r e f e r e n c e to t h e i r h o s p i t a l i z a t i o n . T h i s c o u l d have b i a s e d the i n t e r v i e w e r ' s p e r c e p t i o n of the p a t i e n t ' s knowledge. The i n t e r v i e w e r knew whether the p a t i e n t belonged to the Study or Control group p r i o r to the interviews. This could have biased the interviewer's perception of the patient's knowledge. The c l i n i c doctors were also aware of the patients' interviews after t h e i r check-ups, and the objective of the study. Different interpreters were used for d i f f e r e n t patients. Interpreters were usually friends or r e l a t i v e s accompanying the patients to the c l i n i c . Many biases could have resulted from the use of more than one interpreter, as well as the potential for inaccuracies and inconsistencies i n the interpretation of the questions and/or the answers by the interpreters. Interviews were conducted i n Chinese by the interviewer when necessary. Inaccuracies and inconsistencies could have been introduced as well. Other interviewer biases could also have been introduced. By v i r t u e of the fact that the interviewer i s of Chinese o r i g i n , bias towards people of similar ethnic o r i g i n could have influenced her perception of t h e i r knowledge l e v e l . It was possible that people with lower education were intimidated by an interviewer with a University education. Even though most people are be-coming more open-minded, one cannot rule out the p o s s i b i l i t y of the fact that a woman conducting the interviews could have aroused negative feelings i n some people, thus influencing t h e i r responses. It i s possible that a change in the wording and/or the sequence of the questions might have changed the responses of the Study and Control groups. For instance: Q. 4 "What do you think i s the major cause of tuberculosis?" Q. 5 "Is t.b. infectious?" 6.4 I t i s p o s s i b l e t h a t the word " i n f e c t i o u s " was a r a t h e r t e c h n i c a l term which posed some d i f f i c u l t y t o people w i t h lower education or to those w i t h E n g l i s h as a second language. People c o u l d have given a f f i r m a t i v e answers to q u e s t i o n s they d i d not under-stand simply because they thought i t was expected of them. Thus, the l e v e l of knowledge i n d i c a t e d by the scores might not r e p r e s e n t the knowledge of people with lower e d u c a t i o n or those who had d i f f i c u l t y w i t h E n g l i s h . A change i n the order of Q. 4 and Q. 5 c o u l d have i n f l u e n c e d the response to Q. 4. The word " i n f e c t i o u s " c o u l d have been a c l u e t o some p a t i e n t s , e s p e c i a l l y those w i t h h i g h e r e d u c a t i o n . I f Q. 5 were p l a c e d as the f i r s t q u e s t i o n , more people c o u l d have given "germ" as the major cause of the d i s e a s e as opposed t o other causes. The o n l y other study done i n Canada on the comparison of the knowledge of the H o s p i t a l i z e d and N o n - H o s p i t a l i z e d was by 25 Dorken i n 1975. She found t h a t the h o s p i t a l i z e d p a t i e n t s i n her study had lower scores than the n o n - h o s p i t a l i z e d p a t i e n t s . The d i f f e r e n c e s i n the r e s u l t s of her study and the present study c o u l d be a t t r i b u t e d t o a number of f a c t o r s . For i n s t a n c e , the 1972 study was conducted i n s e v e r a l communities across Canada, whereas the present study was done i n one community w i t h i n the Province of B r i t i s h Columbia. I t i s r e c o g n i z e d t h a t there are d i f f e r e n c e s i n h o s p i t a l admission c r i t e r i a between p r o v i n c e s across Canada. The p a t i e n t education programs o f f e r e d by the i n s t i t u t i o n s i n v o l v e d i n the p r e v i o u s study would l i k e l y d i f f e r from those o f f e r e d by Pearson H o s p i t a l and Willow Chest C l i n i c as w e l l . P a t i e n t s i n the Dorken study were s e l e c t e d a t random from p r o v i n c i a l or t e r r i t o r i a l r e g i s t r i e s , whereas the study groups i n the present study were, sampled s y s t e m a t i c a l l y . F u r t h e r r e s e a r c h under b e t t e r c o n t r o l l e d environments w i l l be necessary to v a l i d a t e the f i n d i n g s of these two s t u d i e s . However, i n l i g h t o f the f a c t t h a t Pearson H o s p i t a l d i d provide g r e a t e r e d u c a t i o n a l o p p o r t u n i t i e s t o the p a t i e n t s ( i n -formal though they may be) than Willow Chest C l i n i c , the higher scores among the (H) group c o u l d be an i n d i c a t i o n t h a t the H o s p i t a l i z e d p a t i e n t s knew more about t u b e r c u l o s i s than the Non-H o s p i t a l i z e d p a t i e n t s as a r e s u l t o f p a t i e n t e d u c a t i o n . D i f f e r -ences i n the scores c o u l d be a t t r i b u t e d i n p a r t t o the d i f f e r e n c e s i n v a r i a b l e s such as age, sex, education and e t h n i c o r i g i n . However, a n a l y s i s i n d i c a t e d t h a t when these v a r i a b l e s were c o n t r o l l e d f o r one a t a time the scores of the (H) were s i g n i f i -c a n t l y and c o n s i s t e n t l y h i g h e r than the (H). The (H) group seemed to be at an advantage over the (H) i n t h a t a s i g n i f i c a n t l y h i g h e r p r o p o r t i o n o f them had i n d i c a t e d t h a t they had l e a r n e d a l o t more about t u b e r c u l o s i s s i n c e the i n i t i a t i o n o f t h e i r treatment, and were s a t i s f i e d w i t h t h e i r present knowledge. Even i f i t were c l e a r l y demonstrated t h a t h o s p i t a l i z a t i o n p r o v i d e d b e t t e r o p p o r t u n i t i e s f o r p a t i e n t e d u c a t i o n , i t does not n e c e s s a r i l y mean t h a t h o s p i t a l i z a t i o n should be recommended i n -d i s c r i m i n a t e l y f o r the f o l l o w i n g reasons: (1) The a c t u a l extent of the H o s p i t a l i z e d p a t i e n t s ' knowledge of the d i s e a s e was f a r from adequate. Although over 80% of them r e a l i z e d t h a t t u b e r c u l o s i s i s i n f e c t i o u s , they were 66 i g n o r a n t a b o u t t h e e x i s t e n c e o f t h e t u b e r c u l o s i s g e r m s a s t h e c a u s e o f t h e d i s e a s e ; u n c e r t a i n a b o u t t h e mode o f d i s e a s e t r a n s m i s s i o n , a n d a b o u t t h e p r e v e n t i v e m e a s u r e s ; a n d h a d o n l y a v a g u e i d e a a b o u t t h e p u r p o s e o f t h e d r u g c o u r s e . The mean t o t a l s c o r e o f t h e H o s p i t a l i z e d g r o u p was o n l y a p p r o x i m a t e l y f i f t y - s i x p e r c e n t o f t h e maximum t o t a l s c o r e . (2) H o s p i t a l i z a t i o n i n c u r r e d h i g h c o s t s - f i n a n c i a l l y a n d p s y c h o l o g i c a l l y . O v e r h a l f o f t h e p a t i e n t s who w e r e t r e a t e d i n t h e c l i n i c a l o n e i n d i c a t e d t h a t t h e y d i d n o t f e e l t h a t h o s p i t a l i z a t i o n w o u l d b e a n e c e s s a r y p a r t o f t h e i r t r e a t m e n t a s i t w o u l d d i s r u p t f a m i l y l i f e a n d w o r k , a s w e l l a s e n c o u r a g e s o c i a l s t i g m a . (3) I t h a d b e e n s h o w n b y p r e v i o u s s t u d i e s t h a t c l i n i c t r e a t m e n t c o u l d b e e f f e c t i v e when p r o p e r s u p p o r t s e r v i c e s w e r e p r o -v i d e d t o t h e h e a l t h p r o f e s s i o n a l s a n d p a t i e n t s . (4) A s much a s p o s s i b l e , p e o p l e s h o u l d b e e n c o u r a g e d t o b e r e s p o n s i b l e f o r t h e i r own h e a l t h . A m b u l a t o r y t r e a t m e n t e n c o u r a g e d p a t i e n t s t o b e c o m e s e l f - d i r e c t e d p a r t i c i p a n t s i n t h e i r t r e a t m e n t p r o g r a m . (5) T h i s s t u d y h a d i n d i c a t e d t h a t p a t i e n t e d u c a t i o n c a n i m p r o v e k n o w l e d g e o f t u b e r c u l o s i s among p a t i e n t s . T h e r e f o r e , d i f f e r e n t w a y s o f i m p r o v i n g p a t i e n t e d u c a t i o n s h o u l d b e e x p l o r e d . S e v e r a l o t h e r i m p l i c a t i o n s f o r p a t i e n t e d u c a t i o n c a n b e d e r i v e d f r o m t h i s s t u d y . The i m p o r t a n c e o f c o m m u n i c a t i o n o f d i s e a s e i n f o r m a t i o n i n patient education was reiterated. Patients i n both (H) and (H) groups indicated that they wanted to be t o l d everything about the disease. Different patients had t h e i r unique needs, and hence re-quired d i f f e r e n t means of communicating information. The methods to d e l i v e r the information should be f l e x i b l e and should be in d i v i d u a l i z e d to meet each patient's l e v e l of understanding. Language d i f f i c u l t y had been c i t e d as one of the reasons why disease information, when offered, was not understood. It also i n h i b i t e d patients from questioning. S e n s i t i v i t y to the language and c u l t u r a l b a r r i e r s of people from d i f f e r e n t cultures i s paramount, es p e c i a l l y i n view of the varied ethnic origins constituting the tuberculosis patient population. The fact that Native and East Indians were s p e c i a l l y d e f i c i e n t i n t h e i r knowledge of the cause, course and development of the disease i s a matter of great concern since the former group s t i l l has the highest rate of tuberculosis i n Canada. People with "Public School or None" education knew less about a l l aspects of tuberculosis, therefore extra e f f o r t has to be invested i n imparting disease information to them. Older people, by vir t u e of having the largest proportion (42.5%) with "Public School or None" education, were at a disadvantage with regards to knowledge about disease. Again, concentrated e f f o r t needs to be devoted to educating t h i s group (Table B. 2, Appendix B). Individual education seemed to have no bearing on responses to such questions as: 68 Q. 11 Can t.b. spread from the lungs to other parts of the body? Q. 16 Do you know the name of the vaccine against t.b.? Q. 17 What do you think i s the f i r s t most important habit for people with t.b. to follow to get better? (Table B.3, Appendix B) It would seem that t h i s specialized information i s not l i k e l y to be acquired through general education, hence i t requires special attention from health educators. The older age groups were s i g n i f i c a n t l y d e f i c i e n t i n knowledge i n the following areas: (1) P o s s i b i l i t y of relapses (2) Tests to determine i f sputum i s posit i v e or negative (3) B.C.G. as a vaccine against tuberculosis (4) Duration of treatment (Table B.4, Appendix B). Again, special emphasis should be placed i n these areas when communicating with older patients. The tuberculosis non-respondents were most common among males i n the "10-39" age group. Among the (H) non-respondents, 69% were male and 45% were in the "10-39" age group. This seems to indicate that extra e f f o r t should be devoted to the case-follow-up of the younger male tuberculosis patients. The r o l e of the health personnel as educators i s most important since both patients and non-patients r e l y primarily on them for disease information. It i s unfortunate that one of the major factors i n h i b i t i n g some patients from vo c a l i z i n g t h e i r medical concerns was that physicians were perceived as being too busy. There i s a d e f i n i t e need for the use of a u x i l i a r y health personnel for education purposes and for the organization of patient education programs to augment the amount of education patients received during the interviews with t h e i r physicians. Voluntary agencies have an important role to play i n education. Literature, media and pamphlets had also been i n d i -cated as a s i g n i f i c a n t source of public health information for the patients and general public. They l a i d the foundation for community acceptance of tuberculosis control programs. Both (H) and (H) were s a t i s f i e d with the present arrange-ment for c l i n i c check-ups and the drug course. CONCLUSION Tuberculosis patient education i s an important factor towards successful control of the disease. Tuberculosis patients seemed to know more about the disease than non-tuberculosis patients. This suggested that some form of patient education had taken place during the course of treatment. Patients who had been hospitalized appeared to know more about the disease than patients who were treated on an ambulatory basis since the diagnosis of t h e i r disease. Many reasons, apart from h o s p i t a l i -zation, could be responsible for the observed differences i n the knowledge between the two groups. However, even i f i t were demonstrated that more patient education had taken place i n the hospital than in the c l i n i c , h o s p i t a l i z a t i o n should not be advo-cated indiscriminately. The findings of t h i s study suggested, that there i s d e f i n i t e need for patient education for both the hospital "and c l i n i c patients. For instance, the Non-Hospitalized group had higher scores than the Control group only i n the areas of treatment of tuberculosis; and the mean t o t a l score of the Hos-p i t a l i z e d group was only approximately f i f t y - s i x percent of the maximum t o t a l score. Patient education programs leading to the improvement of patient knowledge about tuberculosis would be b e n e f i c i a l to the treatment and control of tuberculosis. The attitude analyses suggested that patients considered i t important for them to be informed about a l l aspects of the disease. 70 They were aware of t h e i r lack of knowledge p r i o r to having the disease; and were r e l a t i v e l y s a t i s f i e d with the information they received, and the way i t was communicated to them. The use of non-tuberculosis patients to estimate the l e v e l of knowledge of tuberculosis p r i o r to the disease has not been completely s a t i s f a c t o r y . 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Pedi a t r i c s , 42:733-742, 1968. 84 Appendix A QUESTIONNAIRE 86 We w i l l be c o v e r i n g a few t o p i c s , b u t p e r h a p s we c a n s t a r t o f f by f i n d i n g o u t y o u r o p i n i o n s on t h e f o l l o w i n g q u e s t i o n s : PART I 1. Which of the f o l l o w i n g sources have pro-v i d e d you w i t h the i n f o r m a t i o n about t.b.? f a m i l y d o c t o r t.b. d o c t o r t.b. nurse p u b l i c h e a l t h nurse f a m i l y f r i e n d s other t.b. p a t i e n t s l i b r a r y books t.b. pamphlets media oth e r 2. W h i c h s o u r c e s w o u l d y o u u s e i f y o u w a n t more i n f o r m a t i o n on t . b . ? f a m i l y d o c t o r t . b . d o c t o r t . b . n u r s e p u b l i c h e a l t h n u r s e f a m i l y f r i e n d o t h e r t . b . p a t i e n t s l i b r a r y b o o k s t . b . p a m p h l e t s m e d i a o t h e r 3 . What do y o u t h i n k i s w o r s t a b o u t h a v i n g t . b . ? p h y s i c a l d i s c o m f o r t h o s p i t a l i z a t i o n d r u g s f i n a n c i a l s t r e s s s o c i a l s t i g m a l o s s t i m e / p a y f r o m w o r k none dk o t h e r 87 Now I wonder i f you w i l l answer a few questions on t.b. i n general: 4. What do you think i s the major cause of t.b.? 6 t.b. germs -6 age -6 socio-economic factors -6 low resistance -6 heredity 0_dk -6 other 5. Is t.b. infectious? 6 yes -6 no -6 dk -6 other 6. Do you know how t.b. germs get out of the body of a sick person? 6 coughing, sneezing, etc. -6 dk -6 other 7. Do you know how people get t.b. germs into t h e i r bodies? 6 breathing t.b. germs into lungs -6 dk -6 other 8. What are the common symptoms of active t.b.? Name any two. 4 fatigue/weight loss/chest pain/ coughs/aches 0 none 0 dk -4 other 9. Do you know why some people have t.b. germs i n t h e i r bodies and not get sick with i t ? 4 d i f f e r e n t resistance 0 dk -4 other 88 10. At what ages i s i t possible for people to get t.b.? 4 a l l ages 0_dk -4 other 11. Can t.b. spread from the lungs to other parts of the body? 4 yes -4 no 0_dk -4 other 12. Do people usually recover from t.b. completely? 4 yes -4 no 0_dk -4 other 13. Is i t possible for people to have relapses? 4 yes -4 no 0_dk -4 other Perhaps you can t e l l me something about t.b. t e s t s : 14. Do you know what the tuberculin skin test i s for? 4 detection of t.b. germs i n the body 0 dk -4 other 15. Could you t e l l me the two tests that are done to determine i f a person's sputum/specimen i s positive or negative? 2 culture and smear 0 dk -2 other 89 We have talked about the disease i n general and ways of detecting i t . We w i l l move on to the next item on prevention: 16. Do you know the name of the vaccine against t.b.? 2 B • C • G • 0~dk -2 other On the subject of treatment for t.b.: 17. What do you think i s the f i r s t most important habit for people with t.b. to follow to get better? 6 take drugs regularly 1 fresh a i r 1 rest 1 n u t r i t i o n 1 general hygiene -6 none -6 dk -6 other 18. Do you know the names of two of the drugs that people take for t.b.? 6_INH/PAS/Ethambutol/Rifampin 1 i d e n t i f y by colour/number 0 dk -6 other 19. Do you know for how long altogether are they supposed to take the drugs? 4 18-24 months 0 dk -4 other 20. Do you f e e l i t i s necessary for them to continue with the medication even af t e r they f e e l better? Why? 4 yes -4 no 0 dk -4 other Why? Non-t.b. patients to section on personal data. 90 PART II 1. How would you.rate your own knowledge of t.b. before you were sick i n terms.* of: . good f a i r poor none dk 2. How much more about t.b. would you say you have learned since you were sick i n terms of: a l o t some a l i t t l e none at a l l dk 3 . Was an explanation of your i l l n e s s : offered without asking? asked and was given? asked but not given? (to 5a) not asked and not given? (to 5b) 4. Do you f e e l that the explanation was given and you understood i t but not understood (to 5c) 5. What would you say i s the major reason why an explanation to your i l l n e s s was a) asked and not given b) not asked and not given c) given but not understood 6 . Do you f e e l that patients should be t o l d everything about t h e i r i l l n e s s ? yes no dk other 7. Are you s a t i s f i e d with your present knowledge about t.b., or are there areas that you would l i k e to know more about? s a t i s f i e d areas would l i k e to know more about Please specify: 91 8. Would you p r e f e r t h a t your f a m i l y d o c t o r d i s c u s s t.b. wit h you? yes no dk other 9. Would you p r e f e r t h a t the p u b l i c h e a l t h nurse d i s c u s s t.b. w i t h you? yes no dk other 10. Do you t h i n k i t i s b e n e f i c i a l f o r people w i t h t.b. to be h o s p i t a l i z e d ? yes no dk other Why? 11. Do you f e e l t h a t i t i s necessary f o r you to come i n r e g u l a r l y t o the chest c l i n i c ? yes no dk o t he r Why? You have been very p a t i e n t i n answering a l l the q u e s t i o n , I would l i k e , i n t h i s l a s t s e c t i o n t o have some of your suggestions on how s e r v i c e s can be improved f o r t.b. p a t i e n t s . . . 12. Is the r e anything you c o u l d suggest to make i t e a s i e r f o r you to at t e n d c l i n i c ? time l o c a t i o n t r a n s p o r t a t i o n c o s t none dk other 13. Is there anything you co u l d suggest t o make i t e a s i e r f o r you to take your medication? none dk other 92 PERSONAL DATA For the purpose of data a n a l y s i s , do you mind i n c l o s i n g , t e l l i n g me something about y o u r s e l f : What was the h i g h e s t l e v e l o f school you have completed? p u b l i c s c h o o l 1-3 years' h i g h s c h o o l high school graduate 1-3 year s ' c o l l e g e 4 or more years' c o l l e g e DEMOGRAPHIC DATA Name t.b. number age: 0-9 10-19 20-29 30-39 40-49 50-59 60-69 70 and o l d e r sex: M F m a r i t a l s t a t u s : S M W D C r a c i a l o r i g i n : Caucasian Native Indian Chinese East Indian other Type of diagnosis Date of diagnosis Day of hospital admission Day of hospital discharge Duration of stay i n Canada time of diagnosis Other comments 94 A p p e n d i x B 95 Table B.l Demographic Structure of the Non-Respondents  of the Study Groups H H Total AGE 10-39 6 2 8 40-59 2 1 3 60-70+ 5 1 6 Total 13 4 17 SEX Male 9 3 12 Female 4 1 5 Total 13 4 17 MARITAL STATUS Single 5 3 8 Married 8 1 9 Total 13 4 17 ETHNIC ORIGIN Caucasian 6 - 6 Native Indian 2 - 2 East Indian 1 - 1 Chinese 4 2 6 Other - 2 2 Total 13 4 17 96 Table B.2 Age and Education D i s t r i b u t i o n of the  Study and Control Groups 10-39 40-59 60-70+ Total None or Public School 30(26.5) 35(31.0) 48(42.5) 113(35.2) High School College Total 54 (41.9) 52 (40.3) 23 (17.8) 129 (40.3) 39(49.4) 23(29.1) 17(21.5) 79 (24.6) 123(38.3) 110(34.3) 88(27.4) 321(100.) 97 Table B.3 Patient Knowledge by General Education Levels None or High Public School School College Total Q . l l Can t.b. spread from lungs to other parts of the body? yes 56(49.6) 67(51.9) 46(58.2) 169(52.6) no 14(12.4) 21(16.3) 16(20.3) 51(15.9) don't know 43(38.1) 41(31.8) 17(21.5) 101(31.5) Total 113(35.2) 129(40.2) 79(24.6) 321(100.) Q.16 Do you know the name of the vaccine against t.b.? B.C.G. 8( 7.1) 12( 9.3) 11(13.9) 31 ( 9.7) other/don't know 105(92.9) 117(90.7) 68(86.1) 290(90.3) Total 113(35.2) 129(40.2) 79(24.6) 321(100.) Q.17 What do you think i s the one most important habit for people with t.b. to follow to get better? drug 42(37.2) 43(33.3) 26(32.9) 111(34.6) rest/fresh a i r 30(26.5) 43(33.3) 31(39.2) 104(32.4) hygiene/nutrition 12(10.6) 13(10.1) 6( 7.6) 31( 9.7) don't know/other 29(25.7) 30(23.3) 16(20.3) 75(23.4) Total 113(35.2) 129(40.2) 79(24.6) 321(100.) (Q.ll) p : 0.161 (Q.16) p : 0.283 (Q.17) p : 0.707 98 Table B.4 Patient Knowledge by Age 10-39 40-59 60-70+ Total Q.13 Is i t possible for people to have relapses? yes 97(78.9) .96(87.3) 63(71.6) 256(79.8) no 4( 3.3) 5( 4.5) 3( 3.4) 12 ( 3.7) don't know 22(17.9) 9( 8.2) 22(25.0) 53(16.5) Total 123(38.3) 110(34.3) 88(27.4) 321(100.) Q.15 Could you t e l l me the two tests that are done to determine i f a person's sputum/specimen i s posi-t i v e or negative? smear & culture (1) 7(5.7) 7 ( 6.4) 2(2.3) 16 ( 5.0) (2) 11( 8.9) 10( 9.1) 1( 1.1) 22( 6.9) don't know/other 105(85.4) 93(84.5) 85(96.6) 283(88.2) Total 123(38.3) 110(34.3) 88(27.4) 321(100.) Q.16 Do you know the name of the vaccine against t.b.? B.C.G. 15(12.2) 14(12.7) 2( 2.3) 31( 9.7) don't know/other 108(87.8) 96(87.3) 86(97.7) 290(90.3) Total 123(38.3) 110(34.3) 88(27.4) 321(100.) Q.19 Do you know for how long altogether are they sup-posed to take the drugs? 18-24 months 68(55.3) 51(46.4) 32(36.4) 151(47.0) don't know 45(36.3) 47(42.7) 53(60.2) 145(45.2) other 10( 8.1) 12(10.9) 3( 3.4) 25( 7.8) Total 123(38.3) 110(34.3) 88(27.4) 321(100.) (Q.13) p : 0.034 (Q.15) p : 0.072 (Q.16) p : 0.022 (Q.19) p : 0.007 

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