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Patient experiences with outpatient cancer care in British Columbia, 2012/13 Black, Charlyn, 1954-; Mooney, Dawn; Peterson, Sandra Jan 31, 2014

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Patient Experiences with  Outpatient Cancer Care in  British Columbia, 2012/13January 2014Charlyn Black MD ScDDawn Mooney MPHSandra Peterson MScPatient Experiences with Outpatient Cancer Care in British Columbia, 2012/13 was produced by:Centre for Health Services and Policy ResearchUniversity of British Columbia201–2206 East MallVancouver, BC V6T 1Z3Phone: 604-822-4969Email: enquire@chspr.ubc.caYou can download this publication from www.chspr.ubc.ca1ContentsU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 List of tables and figures4 About CHSPR5 Acknowledgments6 Executive Summary6 About this survey6 Findings7 Introduction7 The importance of understanding patient experience7 Approaches to understanding patient experience in BC8 BC’s 2005/06 and 2012/13 outpatient cancer care surveys10 The Canadian benchmarks11 About this report12 1. What did we learn? Findings from 2012/1312 1.1 Characteristics of patients who responded to the survey16 1.2 Overall evaluations of care21 1.3 Evaluations of individual patient-centred dimensions of care29 1.4 Areas of strength reported by BC patients30 1.5 Areas for improvement reported by BC patients31 2. How have patient experiences changed since 2005/06?31 2.1 Approaches to comparing 2005/06 and 2012/13 survey responses32 2.2 Overall evaluations of care, 2012/13 vs. 2005/0633 2.3 Overall evaluations based on combined dimensions of care, 2012/13   vs. 2005/0634 2.4 Dimension scores 2012/13 vs. 2005/0635 2.5 Areas of strength, 2012/13 vs. 2005/0636 2.5 Areas for improvement, 2012/13 vs. 2005/0637 Discussion and conclusions41 References42 Appendix 1: Participating facilities by 2012/13 peer groupP A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32List of tables and figures12 Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and   type of cancer13 Table 2: Number and percent of respondents or patients, by type and location of   care14 Figure 1: Health status among patients receiving outpatient cancer care in BC,   2012/13, compared to Canadian benchmark14 Figure 2: Emotional health among patients receiving outpatient cancer care in BC,   2012/1315 Figure 3: Amount of pain among patients receiving outpatient cancer care in BC,   2012/13, compared to Canadian benchmark16 Figure 4: Overall rating of outpatient cancer care in BC, 2012/13, compared to   Canadian benchmark16 Figure 5: Overall rating of outpatient cancer care in BC and health authorities,   2012/13, compared to Canadian benchmark17 Figure 6: Overall rating of outpatient cancer care in BC, 2012/13, compared to   Canadian benchmark17 Figure 7: Overall rating of outpatient cancer care in BC and health authorities,   2012/13, compared to Canadian benchmark18 Figure 8: Overall rating of outpatient cancer care in BC, 2012/1318 Figure 9: Overall rating of outpatient cancer care in BC and health authorities,   2012/1319 Figure 10: Overall rating of outpatient cancer care in BC and health authorities,   2012/13, compared to Canadian benchmark20 Figure 11: Overall rating of outpatient cancer care in BC, 2012/13, compared to   Canadian benchmark21 Figure 12: Dimension scores in BC, 2012/13, compared to Canadian benchmark22 Figure 13: Dimension scores in BC and health authorities, 2012/13, compared to   Canadian benchmark23 Figure 14: Respect for patient preferences dimension: Composite score and    individual question scores in BC, 2012/13, compared to Canadian benchmark24 Figure 15: Access to care dimension: Composite score and individual question   scores in BC, 2012/13, compared to Canadian benchmark25 Figure 16: Physical comfort dimension: Composite score and individual question   scores in BC, 2012/13, compared to Canadian benchmark26 Figure 17: Coordination and continuity dimension: Composite score and individual   question scores in BC, 2012/13, compared to Canadian benchmark27 Figure 18: Information, communication and education dimension: Composite score   and individual question scores in BC, 2012/13, compared to Canadian benchmark28 Figure 19: Emotional support dimension: Composite score and individual question   scores in BC, 2012/13, compared to Canadian benchmark29 Figure 20: Ten questions with highest ratings in BC, 2012/13, compared to    Canadian benchmarkU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H330 Figure 21: Ten questions with lowest ratings in BC, 2012/13, compared to Canadian   benchmark32 Figure 22: Overall rating of outpatient cancer care in BC, by health authority,    2012/13 replication group compared to 2005/0633 Figure 23: Overall rating of outpatient cancer care in BC, by health authority,    2012/13 replication group compared to 2005/0634 Figure 24: Dimension scores in BC, 2012/13 replication group compared to 2005/0635 Figure 25: Ten questions with highest ratings in BC, 35 2012/13 replication group compared to 2005/0636 Figure 26: Ten questions with highest ratings in BC, 2012/13 replication group   compared to 2005/06P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 34About CHSPRThe Centre for Health Services and Policy Research (CHSPR) is an independent research centre based in the School of Population and Public Health of the University of British Columbia. Our mission is to stimulate scientific enquiry into health system performance, equity and sustainability. Our faculty are among Canada’s leading experts in primary health care, health care funding, variations in health services utilization, health human resources, and pharmaceutical policy. We promote interdisciplinarity in our research, training, and knowledge translation activities because contemporary problems in health care systems transcend traditional academic boundaries. We are active participants in various policy-making forums and are regularly called upon to provide policy advice in British Columbia, Canada, and abroad. We receive core funding from University of British Columbia. Our research is primarily  funded through competitive, peer-reviewed grants obtained from Canadian and international funding agencies.For more information about CHSPR, please visit www.chspr.ubc.ca.AcknowledgmentsU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H5We would like to acknowledge the work of the many people and organizations that have contrib-uted to the development of this report.First and foremost, the responses of British Columbia (BC) residents to questionnaires asking them about their experiences in receiving outpatient care for treatment of cancer have made this report possible. This includes the more than 13,000 cancer patients who completed surveys: over 6,900 between November 2005 and May 2006, and approximately 6,300 between October 2012 and June 2013. Their contributions of time and perspective made this report possible. The BC Patient Reported Experience Measures Steering Committee (PREMS Committee) has been the primary leader of work to understand the experiences of BC residents with their health care system. Under the direction of the Deputy Minister of Health and Chief Executive Officers of the health authorities of BC, this committee has undertaken numerous province-wide surveys to learn and share information about the health care experiences of BC residents. In 2005/06 and again in 2012/13, they undertook an Ambulatory Oncology Patient Satisfaction Survey to report on the experiences BC patients have with outpatient cancer care. In 2007, and again in 2013, the BC PREMS Steering Committee engaged the UBC Centre for Health Services and Policy Research to assist them in portraying the results of the two surveys.The project has benefitted from the contributions and advice of many individuals. In particular, Lena Cuthbertson, Provincial Director and Co-Chair, and Jennifer May, Project Manager, both with the BC PREMS Committee, provided invaluable insight and direction. Michael A. Murray PhD, an independent health services consultant, researcher, and educator, designed the sampling strategy for the survey and provided valuable input into the interpretation of results. Sandra Broughton, Regional Administrator BC Cancer Agency – Sindi Ahluwalia Hawkins Centre for the Southern Interior, contributeded helpful comments and clarification in response to an earlier version of the report.The National Research Corporation Canada (NRCC) collected survey data and generated reports, under contract with the BC PREMS Steering Committee, that form the basis of the information presented in this report. This report is intended to summarize the results of provincial and health authority reports for  this sector, and is therefore descriptive in nature. It relies primarily on documents containing the results of analyses conducted by researchers and analysts at NRCC. Errors or omissions in this report may therefore reflect errors in the original collection or analysis of data. Any conclusions  are those of the authors and no official endorsement by the Government of BC is intended or should be inferred.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 36Executive SummaryThe purpose of this report is to describe British Columbians’ perceptions and reported experi-ences with outpatient cancer care, to compare their responses to those of other Canadians, and to deter-mine if there have been changes in patient experiences for comparable BC patients who were surveyed in 2005/06. This is the second report to provide  descriptive information about this sector of the health care system. The first, published in 2007, described the results of the 2005/06 survey (6).About this surveyIn BC, the Patient Reported Experience Measures Steering Committee (PREMS Committee) has been tasked with developing a provincial approach to measure patient experience. The PREMS Commit-tee contracted the National Research Corporation Canada (NRCC) to collect survey data and generate reports that, in turn, form the basis of the informa-tion presented in this report. Surveys of patients were conducted using a standardized instrument, the Ambulatory Oncology Patient Satisfaction Survey. This survey tool includes standard questions to evaluate care, plus scales that have been developed to measure six dimensions of patient-centred care: respect for patient preferences; access to care; physical comfort; coordination and continuity; informa-tion, communication and education; and emotional support. In addition to questions that are used in surveys in several Canadian provinces, the BC survey included additional questions that were developed specifically for use in this province. Two surveys of outpatient oncology patients have been conducted in BC, the first in 2005/06 and a more recent 2012/13 survey, which is the focus of this report.FindingsFindings from BC’s outpatient cancer survey suggest that BC cancer outpatients are highly satisfied with the care that they receive, and that there is a pattern of high, and increasingly positive ratings of patient satis-faction over time. When the focus is shifted to aspects of care that more deeply reflect patient experiences, ratings of care are lower. Patients give reasonably high ratings to some aspects, including respect for patient preferences, access to care, and physical comfort. They give much lower ratings to aspects of care that reflect attention to their social and emotional needs; these include ratings for coordination and continu-ity; information, communication and education; and emotional support. In 2012/13, only 46.7% of BC cancer outpatients gave positive ratings to the emotional support dimension of their care; this was an improvement from 2005/06, when the score for this dimension was 45.7%. The results of this survey suggest patterns of overall stability, with improvement in several areas since 2005/06. While there have been declines in some aspects, improvement has occurred in some of the areas of greatest weakness. Results for the 2012/13 survey suggest that BC cancer outpatients give slightly, but consistently, lower ratings of their care in comparison to a Canadian benchmark that includes cancer patients in other provinces. These patterns may reflect slightly lower ratings among BC cancer outpatients. Alternatively, they may be related to differences in the composition of respondents in the BC survey, especially the inclusion of almost 70% of patients who received only non-IV therapy during the survey period. Further study to understand the experiences of the non-IV therapy group, as compared to other groups, would provide additional information about this issue.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H7The importance of understanding patient experienceIn health care systems across the world, there is now widespread understanding that patients’ views provide essential information to guide us in achieving high quality health care. Patients offer a complementary perspective to that of clinicians, providing unique information and important insights into the human-ity of care (such as dignity and respect, emotional support, privacy, meeting information needs, waiting and delays, and cleanliness of facilities). Measuring patient experience is important not only because it can facilitate care that improves clinical outcomes, but also because it represents an important outcome in its own right (1). Perhaps more importantly, ‘embedding’ the patient perspective—building an understanding of patients’ experiences into the care that we provide—is increas-ingly considered a hallmark of high quality cancer care. It provides a mechanism to deliver care that is respectful of, and responsive to, individual patient’s preferences, needs and values (2). Most often, when patients encounter the health care system with a diagnosis of cancer, it is at a time when they face fear or uncertainty—they are ill, or are facing unknown recommendations (even for wellness surveillance) that will have unknown consequences for their lives. The health care system can seem over-whelming, daunting, impersonal, and foreign. And patients are often beginning an intensive regime of interaction with the system. Understanding how the health care system responds to their needs provides critical information for health care managers and providers, governments and the public.Approaches to understanding  patient experience in BCOver the past two decades there has been growth in the development of rigorous approaches to under-standing patient experiences. Surveys of patient experience are becoming increasingly important and are now widely used to ensure and encourage improved health care delivery. Since 2003, province-wide surveys have been conducted to understand the experiences of patients in six different sectors in BC’s health care system. The results of these surveys are intended to provide information to improve the ability of health care providers, health authorities and the provincial government to understand and respond to the needs of patients in BC.These surveys have been led by the BC Patient Reported Experience Measures Steering Committee (PREMS Committee), which has been tasked with developing a provincial approach to measure patient experience and overseeing the implementation of surveys. The PREMS Committee work plan for 2012 included the outpatient cancer care sector as one of the priorities for this work and the Committee initi-ated the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) project to measure the experiences of patients receiving cancer care on an outpatient basis.* The project strategy is designed to ensure that surveys are conducted in a scientifically rigorous, coordinated fashion across all six health authorities in BC. The project is guided by the Joint Ministry of Health/Health Authority PREMS Committee, which has representation from each health authority, Providence Health Care, and the BC Ministry of Health.Introduction*  We have chosen to refer to the set of services that do not require patients to stay overnight in a health care facility as outpatient care in this report. The Canadian survey used to assess patient experiences with outpatient cancer care is entitled the Ambulatory Oncology Patient Satisfaction Survey (AOPSS).P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 38BC health care facilities provide an enormous number and variety of cancer care services, both inpatient and outpatient, to cancer patients throughout the prov-ince and beyond. In addition to interactions with care providers for diagnosis, therapy, and disease manage-ment, these services include provision of radiation therapy and systemic (i.e. chemotherapy) treatments that can be delivered intravenously or in other forms such as pills, capsules, liquids and injections. While the BC Cancer Agency plays a primary role in the delivery and oversight of cancer services throughout the province, outpatient cancer services are provided by a large number of facilities and providers (see Appendix 1). These include the BC Cancer Agency Regional Cancer Centres, which provide a full range of radiation and systemic therapy (and are the only locations where BC cancer patients can receive radia-tion therapy); and community chemotherapy centres, which range from large full service hospital-based centres that deliver outpatient oral and intravenous chemotherapy together with medical and nursing support, to small community chemotherapy ser-vices that provide minimal services such as hospital pharmacies that dispense drugs to treat cancer. The Communities Oncology Network is a collabora-tive voluntary partnership that includes a range of community chemotherapy centres, together with the Regional Cancer Centres, with facilitation by the BC Cancer Agency, to support delivery of high quality cancer care to patients and their families in the com-munities where they live. All those involved in cancer care and treatment rely on provincial standards and guidelines established by the Agency.Given the enormous web of outpatient cancer care services provided across Canada, the AOPSS was developed to understand outpatient cancer care through the eyes of patients. The survey is a standard patient survey that has been used internationally and elsewhere in Canada; it was developed by the Picker Institute and validated for use in Canada (including BC) by the National Research Corporation Canada (NRCC). The tool and data extract methodology have been used since March 2004 in eight Canadian provinces (Alberta, British Columbia, Saskatchewan, Manitoba, Ontario, Nova Scotia, PEI, and Quebec). The survey has been conducted twice in BC, first in 2005/06 and more recently in 2012/13. BC has used the same standardized survey tool in both cycles, with some modifications and additional questions, described below.BC’s 2005/06 and 2012/13 outpatient cancer care surveysFor both surveys, adults who received outpatient cancer care over a six month period from one of the BC facilities that deliver cancer services* were eligible to participate. Both surveys were restricted to BC patients who were over 18 years of age, were alive, had a known address, and who received active treatment during a defined six month window (in 2005/06, from November 15, 2005 to May 15, 2006; in 2012/13, from June 15 to December 15, 2012).Outpatient cancer care refers to care that does not require patients to stay overnight in a health care facility; for cancer care, it includes treatments such as intravenous chemotherapy and radiation therapy that are provided by cancer facilities on an outpatient basis, as well as ‘non-intravenous’ therapy that patients use in their homes (e.g. pills, capsules, liquids, creams and injections) or receive in their physician’s office (e.g. injections).*  The facilities included differ slightly between 2005/06 and 2012/13. See Appendix 1 for a list of facilities included in the surveys.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H9In both 2005/06 and 2012/13, surveys were admin-istered using a questionnaire that was mailed to the patient’s home address. Patients could respond using a paper and pencil, or a web-based version. Surveys were available in a number of different languages: English, French, Chinese and Punjabi in 2005/06; and in 2012/13, in all of those languages plus German. While there was a major focus on making the two surveys comparable, a number of changes were made to the 2012/13 survey. These are outlined below.The 2005/06 survey was offered only to patients with a primary diagnosis of cancer. In 2012/13, the survey was expanded to include patients who had a myelo-proliferative blood disorder,* in addition to those with a primary diagnosis of cancer. The two surveys therefore differ to some degree in terms of the types of patients who were eligible to participate, with the 2012/13 survey including this additional group  of patients.A second difference in 2012/13 involved the expan-sion of the survey to include an even larger additional group of patients, based on the type of cancer treat-ment they received. In 2005/06, the survey was restricted to the census of patients (i.e. all patients) who received intravenous (IV) chemotherapy and/or radiation therapy. This approach was repeated in 2012/13. Once again, all patients who received IV che-motherapy and/or radiation therapy during the time of the survey were invited to participate. This subset of the 2012/13 survey respondents is comparable to those surveyed in 2005/06 (with the exception noted in the paragraph above) and to denote this similarity, is sometimes referred to as the ‘replication group’. In recent years approaches to treating cancer have shifted from a reliance on radiation therapy and/or IV chemotherapy (which must be administered in specialized facilities), to a variety of other treatments that include pills, capsules, liquids or creams, all of which can be taken at home or administered in a doc-tor’s office. Given the cancer care system’s increasing reliance on these additional approaches to treating cancer, a sample of patients who were receiving this type of outpatient treatment was added to the survey in 2012/13. This additional group, referred to as those receiving only non-IV treatment modalities,† is an important new group in the 2012/13 survey. Treatment with non-IV chemotherapeutic agents represents a significant change in the delivery of care, and this group of patients is a growing segment of the outpatient cancer treatment population. Given the fact that most of their care takes place away from cancer treatment centres, it is important to understand their experiences with care. In summary, the 2012/13 survey therefore contains information for patients who received three major types of treatment: radiation therapy; IV chemotherapy; and non-IV therapy. The 2012/13 survey instrument was itself modified in several ways. As in 2005/06, the survey used the NRC Picker Canada AOPSS. Given earlier findings of poor patient experiences in the area of emotional support, newly developed ‘made-in-BC’ questions related to this area were added to the 2012/13 survey. *  Myeloproliferative blood disorders, a form of cancer of the blood, are sometimes treated by an oncologist, but more often treated by a hematologist. Patients with this condition are not always told they have a ‘cancer’, in spite of the fact that they receive  intravenous chemotherapy drugs dispensed by the BC Cancer Agency.†  Non-intravenous treatment refers to a variety of treatments that patients may receive for cancer, including pills, capsules, liquids or creams used at home, injections at a doctor’s office, and injections that were administered by the patient or someone else in  their home. P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 31 0In addition, new questions were also included for the newly added sample of patients receiving non-IV therapy. Language related to blood disorders was added to relevant questions, and additional changes were made to 2005/06 survey items to align with changes made in other provinces, and findings from validation studies. Where questions were added or changed, we have included them in this report with notes to interpret findings with caution, recognizing that they are not strictly comparable to the  2005/06 results. The BC survey involved a disproportional sampling scheme, with questionnaires sent to all patients receiv-ing IV chemotherapy or radiation therapy, but to only a sample of patients receiving non-IV therapy. Overall, about 16% of all patients receiving non-IV therapy were mailed questionnaires. These patients were sampled differentially, based on facility size, resulting in large differences in sampling rates within this group. Sampling rates for the non-IV therapy patients ranged from as low as two percent in the largest regional cancer centre, to 100 percent in the 11 smallest facilities. This disproportional sampling scheme resulted in the need to use weights when con-ducting any analyses involving the group of non-IV therapy patients, including analyses of the BC 2012/13 overall survey results.* Using these weights adjusts the disproportional sample so that it ‘looks’ like the results came from a random sample of the BC overall population of all outpatient cancer patients, regardless of patient subgroup (3).The Canadian benchmarksSimilar surveys were conducted in seven other Canadian provinces between January 2011 and December 2012. To provide context for understand-ing BC results, comparative national benchmark scores (referred to as the Canadian benchmark) were developed for questions that were comparable across surveys from these seven other provinces, and BC results were tested to see if they were statistically different from these benchmark scores. A general benchmark that included results for 19,333 patients was developed for provincial and health authority comparisons (with the exception of the ProvincialHealth Services Authority, see below). These patients come from a range of settings: three Alberta hospitals, the Saskatchewan Cancer Agency, Cancer Care Mani-toba, 21 Ontario hospitals, three Quebec hospitals, Cancer Care Nova Scotia, and the Prince Edward Island Cancer Treatment Center. In most cases, ques-tions were identical for all patients. However, for some areas, questions related to radiation therapy were not relevant for all patients. In this case, a benchmark based on a smaller number of patients was developed; where this occurred, footnotes are included.A second comparative benchmark, the ‘Canadian Regional Centres Average’, was developed to provide relevant comparisons for patients treated at more spe-cialized facilities that provide a full range of radiation and systemic therapy for cancer patients, such as the BC Cancer Agency Regional Cancer Centres; this was used to provide a comparable benchmark for patients receiving care from the Provincial Health Services Authority (PHSA), which is the health authority that runs these Regional Cancer Centres. The 11,972 *  Michael A. Murray PhD developed the sampling strategy and weighting scheme for the BC survey.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H1 1patients included in this benchmark come from orga-nizations in two provinces: three Alberta hospitals and 21 Ontario hospitals.It should be noted that while the surveys conducted in other provinces are comparable, they differ from the approach used in BC in a number of ways. Differ-ences include the frequency of conducting surveys,* whether surveys are conducted at a single point in time or over a longer time period, the type of out-patient cancer patients that are included, and the specific questions that are used. Of particular impor-tance for comparisons is the type of patients that are included. Some provinces only survey patients seen at cancer centres, while others, like BC, survey patients who receive services at local hospitals. BC is the only province to produce survey results that have been weighted to reflect the experiences of all cancer patients receiving active treatment, including those receiving non-IV therapy. Since the composition of the Canadian benchmarks in relation to the types of care that have been included is not well understood, and since non-IV therapy patients are less likely to be represented in these benchmarks, comparisons to BC results must be interpreted with caution.About this reportThe purpose of this report is to compile a snapshot of what patients with cancer have to say about their experiences with outpatient cancer care in BC in 2012/13. Where possible, we provide BC results (overall and for health authorities) in comparison to the Canadian benchmarks, which are based on results from 2011 and 2012. We also include a special section that reviews the extent to which there have been changes in reported patient experiences between 2005/06 and 2012/13. This report relies on documents that contain the results of data analyses undertaken by the National Research Corporation Canada, which conducted the survey. While researchers at the UBC Centre for Health Services and Policy Research ran some checks on the analyses, we have not conducted these analyses ourselves and cannot attest to their validity.Presentation of resultsIn presenting the results of this work, we rely on graphical presentation of results accompanied by explanatory text. In providing results for the 2012/13 survey, we typically present results for BC overall, but in some cases we report results for subgroups, either to ensure comparability with the 2005/06 survey, or to focus on differences in patient experience across health authorities. When comparisons are made (for example when BC results are compared to those from the rest of Canada), we have provided information that indicates whether there are statistically significant differences at the 95 percent confidence level. Because of the very large sample sizes that form the basis of many comparisons in this report, some of  the results that are statistically significant involve actual differences in results that are very small. On the other hand, some large actual differences in results do not reach statistical significance; these in turn are related to somewhat smaller sample sizes involved in some of the comparisons (for example those involv-ing special groups of patients and issues of interest). These issues are noted in introductory text for each of the sections. In writing up results, we have focused on areas where we believe that there are important con-clusions to be considered, and areas of special interest and possible concern. *  Many other provinces survey more frequently than BC; some provinces conduct surveys in this area every one to two years.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 31 21. What did we learn? Findings from 2012/131.1 Characteristics of patients who responded to the surveyIn total, over 13,000 patients were mailed the BC Outpatient Cancer Care survey. A total of 6,385 indi-viduals provided responses, for an overall response rate of 48.7%. Response rates varied by the type of cancer treatment that patients received: for the combined radiation therapy and IV chemotherapy group (i.e. the ‘replication group’), the response rate was 48.2%; and for the newly added non-IV therapy group, it was 50.0%. These response rates were compa-rable to those from AOPSS surveys that took place in other Canadian provinces in 2011 and 2012, for which response rates ranged from 44.0% in Alberta, to 65.8% in Nova Scotia.The results presented in this section focus on describ-ing the experiences of all BC cancer patients who received outpatient care, that is, the combined groups of patients receiving IV chemotherapy, radiation therapy, or both, together with the new sample of patients receiving non-IV therapy. Table 1 provides background information about the survey respondents, with the first column presenting unweighted numbers of respondents, and the second column presenting weighted percentages (i.e. they have been weighted to reflect the population of outpa-tient cancer patients in active treatment in 2012/13). Over 99% of outpatient cancer patients were 35 years of age or older, and over 73% were 60 years of age or older. The highest percentage of patients fell into Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and type of cancer# of respondents % of cancer outpatients*All categories 6,385 100.0Age18-34 years 44 0.635-59 years 1,539 25.660-75 years 3,191 45.676+ years 1,611 28.2SexFemale 3,628 63.8Male 2,757 36.2Ethnicity,  self-reported†White 4,982 86.3Chinese 311 5.6South Asian 78 1.8Aboriginal Person 93 1.1Other 310 5.2No response 611 --Primary  type of cancer, self-reported‡Breast 1,614 42.5Prostate 911 22.0Hematology (blood) 308 6.9Lymphoma 463 4.3Lung 363 4.3Colorectal 356 3.6Cervix/Uterus/Ovary 247 2.6Brain 75 1.5Bowel 105 1.3Bladder 95 1.2Melanoma 93 1.0Neck 75 0.8Stomach 42 0.6Head 40 0.3Kidney 30 0.9Sarcoma 27 0.3Testicular 3 0.0Other 380 5.9Don’t Know 21 0.2No response 1,137 --* Percentages are calculated using total number of respondents to each question (i.e. non-responders have been excluded from  numerator and denominator), and have been weighted to represent the entire outpatient population of BC cancer patients for 2012/13.†  These results were provided in response to the question “The following question will help us better understand the communities we serve. Do you consider yourself to be … ? Aboriginal Person (e.g., North American Indian, Metis, Inuit (Eskimo)); White; Chinese; South Asian (e.g., East Indian, Pakistani, Sri Lankan, etc.); Black; Filipino; Latin American; Southeast Asian (e.g., Vietnamese,  Cambodian, Malaysian, Laotian, etc.); Arab; West Asian (e.g., Iranian, Afghan, etc.); Korean; Japanese; or Other.”‡  These results were provided in response to the question “What was the primary type of cancer or blood disorder you were being treated for in the past 6 months?” U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H1 3the age range of 60 to 75 years (45.6%), with smaller percentages in age groups 35 to 59 years (25.6%) and 76 years and older (28.2%). A much higher percentage of outpatient cancer patients were female than male (63.8% compared to 36.2%).When asked to identify their ethnicity, the largest percentage (86.3%) self-identified as ‘white’. The next largest groups included: Chinese 5.6%, South Asian 1.8%, and Aboriginal Person 1.1%. Smaller numbers of other groups self-identified; they are included in the category ‘other’ and represent 5.2 percent of outpatient cancer patients.When results from respondents are weighted to reflect the results for BC cancer outpatients, breast (42.5%) and prostate cancer (22.0%) were reported as the most frequent types of cancer. Together these patients rep-resent 64.5% of cancer outpatients. The new category of patients in the 2012/13 survey, those with myelo-proliferative blood disorder, appear in the category “Hematology (blood)”; they are the third largest group and represent 6.9% of BC cancer patients receiving outpatient care.In terms of the type of cancer therapy received (Table 2), while the vast majority of respondents (4,694) received radiation therapy and/or IV chemotherapy, when their numbers were weighted to reflect the overall BC outpatient cancer population, they repre-sented only 30.8% of cancer outpatients. In contrast, when weights are applied to the 1,691 respondents who received only non-IV therapy, they represented the vast majority (69.2%) of BC cancer outpatients.Table 2: Number and percent of respondents or patients, by type and location of care# of respondents % of cancer outpatients*All categories 6,385 100.0Type of cancer therapy receivedRadiation therapy &/or IV chemo-therapy (i.e. ‘repli-cation group’)4,694 30.8Non-IV therapy 1,691 69.2Health authority where cancer care receivedInterior Health 883 12.7Fraser Health 373 4.5Vancouver Coastal Health 583 6.7Island Health 608 8.6Northern Health 390 3.5PHSA 3,548 63.9* Percentages are calculated using total number of respondents to each question (i.e. non-responders have been excluded from  numerator and denominator), and have been weighted to represent the entire outpatient population of BC cancer patients for 2012/13.Across the province, the majority of BC cancer outpa-tients received their care from PHSA facilities (63.9%), reflecting services provided by the BC Cancer Agency through regional centres in Vancouver, Vancouver Island, the Fraser Valley, Abbotsford, the Southern Interior, and the North. Interior Health provided care to the next largest group (12.7%), while Northern Health provided cancer services to the smallest per-centage (3.5%) of BC cancer outpatients.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 31 4To describe other characteristics of survey respon-dents, information about health status, emotional status, and the amount of pain that BC cancer patients experience is presented below. These results are based on reports from respondents. They have been weighted to reflect responses from the entire popula-tion of BC cancer patients, and where possible, are presented in comparison to Canadian benchmark results. Because of the large sample sizes involved in comparisons, small differences are likely to achieve statistical significance and attention should be paid to the magnitude of differences. Results are also compared to reports from all Canadians in the 2012 Canadian Community Health Survey (CCHS).Overall, BC cancer patients report better health in comparison to other Canadian outpatient cancer patients (Figure 1). They were more likely to report their health as falling into a positive category (i.e. ‘excellent’, ‘very good’ or ‘good’) (78.9%) compared to their Canadian counterparts (76.1%), even though they were less likely to rate their health status as ‘excel-lent’. They were less likely to report their health as ‘fair’ Figure 1: Health status among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmarkFigure 2: Emotional health among patients receiving outpatient cancer care in BC, 2012/13Excellent7.8* 9.2Good Individual question scoreRating of health status42.4*38.1CanadaBCPoor4.2* 5.5Fair16.9* 18.4Very good28.7 28.8Positive responseExcellent18.9*Good Individual question scoreRating of emotional health*Poor2.5*Fair10.9*31.2*Very good36.4*Positive response* Statistically significant difference from the Canadian benchmark. * A Canadian benchmark is not available as this is a ‘made-in-BC’ question added to the 2012/13 survey to better understand the area of emotional support.or ‘poor’. Not surprisingly, cancer patients report lower levels of health status in comparison to the general Canadian population. In the 2012 CCHS, 59.9% of Canadians reported their health as ‘excellent’ or ‘very good’, in comparison to 36.5% of BC cancer patients and 38.0% of other Canadian cancer patients (4).In terms of self-reported emotional health (Figure 2), when positive responses (i.e. ‘excellent’, ‘very good’ or ‘good’) are combined, 86.5% of BC cancer patients rated their emotional health in this category. No Canadian benchmark is available for this question. AOPSS respondents were asked about the amount of pain they had in the last six months. In response, a high percentage of respondents reported having no pain over this period (Figure 3). This response was much higher for BC cancer outpatients than for those in other Canadian provinces. Moreover, fewer BC cancer patients had pain that was mild, moderate or severe in comparison to Canadian outpatient cancer patients. In comparison to the general Canadian pop-ulation, cancer patients report higher levels of pain. U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H1 5Figure 3: Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark51.5*37.47.8* 11.420.8*24.819.9*26.4No pain inlast 6 mos.Individual question scoreAmount of pain in last 6 monthsSevereModerateMildCanadaBC* Statistically significant difference from the Canadian benchmark.In the 2012 CCHS, 14.2% of Canadians reported pain levels as ‘moderate’ or ‘severe’, in comparison to 28.6% of BC cancer patients and 36.2% of other Canadian cancer patients (4).specialist as the person most involved in treatment planning (72.6% vs. 80.4%) and more likely to identify a family doctor (6.4% vs. 2.5%) or a surgeon (18.4% vs. 15.1%) as playing that role. They were more likely to have seen only one doctor in the past six months (39.2% vs. 26.4%) and less likely to have had one or more hospital stays (19.9% vs. 34.1%). The remainder of this report will focus on provid-ing results of the 2012/13 survey. Section 1 presents findings for the entire set of 6,385 respondents and therefore reports on the combined experiences of those who received any of three types of cancer treatment (radiation therapy, IV chemotherapy, and non-IV therapy) across all age and sex categories. Results are presented for the outpatient cancer popu-lation overall and by the health authority from which cancer care was received. Where relevant, compari-sons are made to the Canadian benchmark results.Section 2 focuses on comparing results from the 2005/06 and 2012/13 surveys. It therefore includes only the ‘replication group’ from 2012/13 (i.e. only those respondents who received IV chemotherapy and/or radiation treatment).An additional report, to follow, will focus on issues of special interest, including the experiences of non-IV therapy patients and Aboriginal cancer patients, and understanding issues related to emotional support in greater depth.In summary, BC cancer outpatients report better health status and lower levels of pain when compared to patients who responded to the outpatient cancer survey in other provinces.Responses to other survey questions also indicate that BC patients differ from patients included in the Canadian benchmark. For example, in comparison to other Canadian respondents to the survey, BC cancer outpatients were more likely to have first been told of their diagnosis one or more years ago (76.8% BC vs. 43.3% Canadian benchmark)—that is, they had been living with a cancer diagnosis for a longer period of time before responding to the survey. They were more likely to have been told of their diagnosis by a family doctor (41.5% vs. 30.1%) or cancer specialist (37.3% vs. 25.7%), and less likely to have heard this news from a surgeon (15.7% vs. 31.2%). In terms of their care pat-terns, BC patients were less likely to identify a cancer P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 31 61.2 Overall evaluations of careThere are many ways to report patients’ overall evalu-ations of the care they receive. Several key approaches are presented in this section, and the results are sum-marized at the end of the section. Overall evaluations of care based on ‘overall rating’ questionThe first approach used an ‘overall rating’ question to ask patients to think about the outpatient care in the facility where they received treatment in the preced-ing six months, and to rate that care as falling into one of five categories: ‘excellent’, ‘very good’, ‘good’, ‘fair’ or ‘poor’. This question is regarded as a standard approach to measuring patient satisfaction. Responses from the 2012/13 survey’s 6,385 respondents are out-lined in Figure 4.Just over 58% of BC patients rated their outpatient care in the facility where they received treatment as ‘excellent’ (58.5%), 29.6% rated it as ‘very good’, and 9.4% as ‘good’. Two percent (2.1%) rated their care as ‘fair’ and 0.4% as ‘poor’. In comparison with the Canadian benchmark, there were interesting differences in the manner in which BC residents reported their care. In terms of positive responses, BC residents were slightly less likely to rate their care as ‘excellent’ in comparison to other Cana-dians (58.5% vs. 61.0%), equally likely to rate their care as ‘very good’, and more likely to rate their care as ‘good’ (9.4% vs. 8.3%). In terms of negative responses, BC residents were more likely to assign a rating of ‘fair’ (2.1% vs. 1.6%) and equally likely to assign a rating of ‘poor’. Figure 5 presents responses to the ‘overall rating’ ques-tion using a format that better facilitates comparisons and reporting over multiple jurisdictions. For this graph, overall percent positive scores were created by summing ‘excellent’, ‘very good’, and ‘good’ categories. Tests for statistical differences were conducted by testing for differences from the Canadian benchmark. As a reminder, this question asks patients to think about the outpatient care in the facility where they received treatment in the preceding six months. It reports results for all patients (including those who Figure 4: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmarkIndividual question scoreOverall quality of care in past six months58.5* 61.029.6 28.79.4* 8.32.1* 1.6 0.4 0.4CanadaBCPoorFairGood Very goodPositive responseExcellent* Statistically significant difference from the Canadian benchmark.Figure 5: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmarkBCCanadaIndividual question scoreOverall quality of care in past six monthsInteriorFraserVancouver CoastalIslandNorthernPHSA97.5*98.097.194.9*97.896.2*95.5*98.0†* Statistically significant difference from the Canadian benchmark.† The PHSA score is compared to a Canadian benchmark that includes only regional cancer centres. This benchmark is 98.2%, and the compa-rision is not statistically significant.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H1 7received radiation therapy, IV chemotherapy, and non-IV therapy) who responded in 2012/13.Using a test of statistical significance, overall percent positive scores were lower for BC patients in com-parison to other Canadians, but the actual magnitude of the difference was very small (97.5% vs. 98.0%). Patients in three of BC’s health authorities had statistically significant lower ratings in comparison to patients responding to the survey in the rest of Canada, but again the actual magnitudes of the differ-ence were small (Fraser Health 94.9%, Island Health 96.2%, and Northern Health 95.5% vs. 98.0% for the Canadian benchmark).Overall evaluations of care based on ‘providers did everything’ questionOther questions on the survey also provide additional perspective on the overall experience of patients. Responses to a question asking patients to assess whether providers did everything to treat their cancer/blood disorder show that 85.0% of respondents replied ‘yes, completely’, while 13.5% replied ‘yes, somewhat’ and only 1.5% replied ‘no’ (Figure 6). These responses were different from the Canadian benchmark, with the percent of BC patients answering ‘yes completely’ almost 5 percentage points lower.When ‘completely’ positive responses are compared across BC and health authorities, important differ-ences are seen (Figure 7). Percent positive responses range from 84.0% to 92.9% across health authorities, in comparison to the Canadian benchmark of 89.7%. Most health authorities have responses that are low in comparison to the Canadian benchmark. The excep-tion is Vancouver Coastal Health, with an extremely high score of 92.9%.Figure 6: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmarkIndividual question scoreProviders did everything to treat cancer/blood disorder85.0*89.713.5*9.21.5* 1.1CanadaBCPositive responseNoYes, somewhatYes, completely* Statistically significant difference from the Canadian benchmark.Figure 7: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmarkBCCanadaIndividual question scoreProviders did everything to treat cancer/blood disorderInteriorFraserVancouver CoastalIslandNorthernPHSA85.0*89.785.2*84.5*92.9*86.6*86.4*84.0†* Statistically significant difference from the Canadian benchmark.† The PHSA score is compared to a Canadian benchmark that includes only regional cancer centres. This benchmark is 89.8%, and the compa-rision is statistically significant.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 31 8Overall evaluations of care based on ‘would recommend to family and friends’ question An additional question asked patients whether they would recommend the facility where they received care to family and friends. Note that a Canadian benchmark is not available for this question.* Responses to this question indicate that 81.6% of respondents replied ‘yes, definitely’ (reported as percent positive in Figure 8), while 16.9% replied ‘yes, probably’ and only 1.4% replied ‘no’.* The question in the AOPSS asks about likelihood to recommend staff at the facility where a patient received treatment in the preceding six months. In the BC version of the survey, the question was modified to mirror the question used in all other sector surveys, asking patients to focus on the facility where they received most of their care. Accordingly, there is not a Canadian bench-mark for this question.Figure 8: Overall rating of outpatient cancer care in BC, 2012/13Individual question scoreWould recommend hospital to family/friends81.616.91.4Positive responseNoYes, probablyYes, definitelyFigure 9: Overall rating of outpatient cancer care in BC and health authorities, 2012/13BCIndividual question scoreWould recommend hospital to family/friendsInteriorFraserVancouver CoastalIslandNorthernPHSA81.669.667.080.966.275.887.0When ‘definitely’ positive responses are compared across BC and health authorities, important differ-ences are seen (Figure 9). Percent positive responses range from 66.2% for patients in Island Health, to 87.0% for PHSA patients. There is no Canadian benchmark for comparison and statistical testing for differences has not been conducted.Overall evaluations based on combining patient-centred dimensions of careAnother way to assess patients’ overall views of their care is to focus on measures that have been developed to assess specific aspects of their experiences. The Picker Institute is credited with identifying ‘dimen-sions’ of patient-centred care in a 1993 book entitled “Through the Patient’s Eyes: Understanding and Pro-moting Patient-Centered Care” (5). These dimensions reflect aspects of care that are important to patients as they journey through the health care system. They bring a fundamentally different perspective than those that have been traditionally used to measure satisfac-tion with care, and quality of care. Over time, these aspects of care have come to be understood as critical to ensuring that health care is ‘patient-centred’, and increasingly they are becoming recognized as impor-tant aspects of quality of care in their own right. U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H1 9* To calculate a dimension score, the number of positive responses is totaled for all questions within the dimension, across all re-spondents. That number is then divided by the total number of responses for all questions across all respondents in the dimension. Un answered questions (or non-applicable responses) are eliminated from both the numerator and the denominator of the positive score calculation.Figure 10: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmarkBCCanadaAll dimension scores combined‡InteriorFraserVancouver CoastalIslandNorthernPHSA63.8*68.964.8*62.3*66.263.6*62.3*63.6†The work to identify these patient-centred dimensions of care has informed the development of approaches to measure them, which in turn, have formed the basis of patient experience surveys. The NRCC has incor-porated six of these dimensions into core items within the AOPSS. These dimensions include: respect for patient preferences; access to care; physical comfort; coordination and continuity; information, com-munication and education; and emotional support. Complex approaches to measuring each of these dimensions have been developed,* and  results for each dimension are presented in graphs that follow. By combining results from these specific dimen-sions, it is possible to develop a summary score; this overall score provides an overall rating that is based on aspects of care that are truly important for patients. It provides a fundamentally different perspective than does the ‘overall rating’ score, which reflects patient satisfaction; instead it provides an overall score that is based on concepts of patient-centredness.Using the summary score for this patient-centred approach to overall evaluation, BC cancer patients had a score of 63.8%, a rating that was 5.1 percentage points and 7.4% lower than the Canadian benchmark of 68.9% (Figure 10). Scores for cancer patients in all six health authorities ranged from 62.3% to 66.2%; all were lower than the Canadian benchmark.* Statistically significant difference from the Canadian benchmark.† The PHSA score is compared to a Canadian benchmark that includes only regional cancer centres. This benchmark is 68.9%, and the compa-rision is statistically significant.‡ Health authority scores (except PHSA) are compared to a Canadian benchmark that is based on a smaller number of patients, because ques-tions related to radiation therapy were not relevant for all patients. This benchmark is 68.7%. P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32 0Overall evaluations of care: SummaryFigure 11 assembles the four approaches that have been used to provide an understanding of BC patients’ overall evaluations of the cancer care that they receive.The ‘overall rating’ question, which measures patient satisfaction, receives the best percent positive score, with 97.5% of BC cancer patients, and 98.0% of Cana-dian cancer patients rating their care positively.The ‘providers did everything’ question received lower percent positive scores from both groups of patients. BC cancer patients had a score of 85.0%, a differ-ence of 12.5 percentage points from the score for the ‘overall rating’ question. In comparison, Canadian cancer patients had a score of 89.7%, a decline of 8.3  percentage points.Still lower scores were registered for the ‘would rec-ommend to friends and family’ question, for which BC patients had a percent positive score of 81.6,  which is 15.9 points lower than the ‘overall rating’ question. A Canadian benchmark was not available for this question.The ‘combined patient-centred dimensions’ measure had the lowest scores among all four approaches. For this measure, BC patients had a score of 63.8% compared to the Canadian score of 68.9%. The differ-ence between this score and the ‘overall rating’ score was large for both groups—33.7 points for BC cancer patients, and 29.1 points for Canadian cancer patients.Both groups therefore demonstrate a pattern of very high ratings when a simple ‘overall rating’ (i.e. satisfaction) score is used, and declining scores as questions become more focused on understanding aspects of care that are relevant to patients, such as when questions are asked about whether they feel that everything possible was done, or whether they would recommend a facility to family or friends. When ques-tions that have been developed explicitly to measure important aspects of patient-centredness are asked, these ratings decline even further. While this pattern is observed for both groups, the magnitude of the decline is greater for BC patients.In the three approaches that have a Canadian bench-mark, ratings for BC cancer patients are consistently lower in comparison to their Canadian counterparts. BC scores range from 0.5 to 5.1 percentage points lower than the Canadian benchmark.Figure 11: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmarkAll dimension scores combinedBC 63.8*Canada 68.9Individual question scoreOverall quality of care in past six monthsBC 97.5*Canada 98.0CanadaIndividual question scoreProviders did everything to treat cancer/blood disorderBC 85.0*89.7Canada Not available†Individual question scoreWould recommend hospital to family/friendsBC 81.6* Statistically significant difference from the Canadian benchmark.† A Canadian benchmark is not available because the question or response options used in BC are different from those used in other provinces.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 1Figure 12: Dimension scores in BC, 2012/13, compared to Canadian benchmark* Statistically significant difference from the Canadian benchmark.1.3 Evaluations of individual patient-centred dimensions of careIn addition to providing a summary measure of patient-centred dimensions of care, given the importance of these aspects of care for patients, it is important to examine individual patient ratings of each dimension. Figure 12 provides this information for each of the six dimensions; for each dimension, it provides information on how BC patients report their overall experiences in comparison to the Canadian bench-mark. Note that the dimensions are displayed to reflect the order in which BC patients assessed their experiences in these domains, from highest to  lowest scores.BC residents gave relatively high ratings to three of these patient-centred dimensions. They gave their highest percent positive ratings to ‘respect for patient preferences’, followed by ‘access to care’ and ‘physical comfort’ dimensions. The lowest rating was given to the ‘emotional  support’ dimension, where only 46.7% of patients rated their experience as positive. Two other dimen-sions received lower ratings from BC patients: ‘coordination and continuity’; and ‘information, com-munication and education’.In comparison to other Canadian cancer patients, BC patients reported lower scores on all patient-centred dimensions. In some cases, these are not meaningful differences. For the dimension of ‘access to care’, BC scores were equivalent to the Canadian score (a differ-ence of 0.1 percentage points), and for the dimension 75.8*80.572.372.472.0*78.266.2*68.160.2*66.946.7*54.0BCCanadaBCCanadaBCCanadaBCCanadaBCCanadaBCCanadaRespect for patient preferencesAccess to carePhysical comfortCoordination and continuityInformation, communication and educationEmotional supportof ‘coordination and continuity’ the difference was only 1.9 points lower. However, in all other domains, BC patients were much less positive about their expe-riences with the cancer care system; differences from comparable Canadian scores ranged from 4.7 points lower for ‘respect for patient preferences’ to 7.3 points lower for ‘emotional support’. P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32 2Evaluations of individual patient-centred dimensions of care across BC jurisdictionsFigure 13 displays BC patients’ reports of their overall experiences on the six individual dimensions of patient-centred care, for all BC patients, and for patients in each health authority. Once again, the dimensions are displayed to reflect the order in which all BC patients assessed their experiences in these domains, from highest to lowest scores.For each dimension, while there is some variability across health authority scores, most are close to the results reported by BC patients overall. Notably, Vancouver Coastal ratings tend to be the highest in every dimension.Figure 13: Dimension scores in BC and health authorities, 2012/13, compared to Canadian benchmark80.575.8*Canada75.7†73.6*77.2*77.473.8*74.7*BCRespect for patient preferencesInteriorFraserVancouver CoastalIslandNorthernPHSA72.472.3Canada72.4†71.171.9*75.069.6*71.6*BCInteriorFraserVancouver CoastalIslandNorthernPHSAAccess to care‡78.272.0*Canada71.4†70.072.976.576.971.8BCInteriorFraserVancouver CoastalIslandNorthernPHSAPhysical comfort‡Canada 68.166.2*65.4†70.365.668.765.466.6BCInteriorFraserVancouver CoastalIslandNorthernPHSACoordination and continuity66.960.2*Canada60.1†58.9*60.7*60.8*57.6*61.2*BCInteriorFraserVancouver CoastalIslandNorthernPHSAInformation, communication and education54.046.7*Canada46.8†44.3*47.0*49.4*46.4*44.6*BCInteriorFraserVancouver CoastalIslandNorthernPHSAEmotional support* Statistically significant difference from the Canadian benchmark.† The PHSA scores are compared to Canadian benchmarks that include only regional cancer centres. For ‘respect for patient preferences’, this benchmark is 80.7%, and the comparision is statistically significant. For ‘access to care’, this benchmark is 72.2%, and the comparision is not statistically significant. For ‘physical comfort’, this benchmark is 78.1%, and the comparision is statistically significant. For ‘coordination and continuity’, this benchmark is 68.0%, and the comparision is statistically significant. For ‘information, communication, and education’, this benchmark is 67.2%, and the comparision is statistically significant. For ‘emotional support’, this benchmark is 53.6%, and the comparision is statistically significant. ‡ Health authority scores (except PHSA) for this dimension are compared to a Canadian benchmark that is based on a smaller number of patients, because questions related to radiation therapy were not relevant for all patients in these settings. This benchmark is 75.9% for ‘access to care’ and 76.5% for  ‘physical comfort’. U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 3Figure 14: Respect for patient preferences dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark75.8*80.5BCCanadaBCCanadaBCCanadaBCCanadaBCCanadaBCCanadaBCCanada92.4*94.392.4*94.288.7*91.572.2*77.352.7*55.150.2*59.9Dimension composite scoreFamily/friends had opportunity to be involved in care/treatmentTreated with dignity/respect by providersFelt could trust providers w/confidential infoInvolved in care decisions as much as wantedComfortable talking with providers re: alternate therapyProviders considered family/living situation in planning treatmentEvaluations of ‘respect for patient  preferences’ dimensionFigure 14 presents detailed information about the ‘respect for patient preferences’ dimension, which received the highest level of percent positive responses from BC residents. This figure also depicts responses to the set of individual questions that comprise the ‘patient preferences’ dimension. These responses are presented for BC patients in comparison to the Cana-dian benchmark. The individual questions are ordered from highest to lowest scores for BC patients.In comparison to patients in other parts of Canada, BC patients reported lower scores on all of these measures—the overall dimension, and each of the individual questions. All of the differences were statistically significant. There was a particularly large difference in the way that BC patients felt that provid-ers considered family and living situations in planning treatment, in comparison to other Canadian cancer patients (50.2% vs. 59.9%).* Statistically significant difference from the Canadian benchmark.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32 4Figure 15: Access to care dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark72.372.4BCCanadaBCCanadaBCCanadaBCCanada82.483.074.7*81.648.7*55.9BCCanada Not available†Canada66.1BCCanada82.384.4BC 81.478.6BCCanada67.0*47.4Dimension composite scoreReceived all services needed in past 6 monthsDid not wait too long for first treatment appointmentProviders considered travel concerns in planning treatmentProviders did everything to make wait for IV chemo comfortableFor patients who received IV chemotherapy:Never waited longer than expected for IV chemo treatmentProviders did everything to make wait for radiation comfortableNever waited longer than expected for radiation treatmentFor patients who received radiation:Evaluations of ‘access to care’ dimensionFigure 15 presents detailed information about the ‘access to care’ dimension, the dimension receiving the second highest level of percent positive responses from BC residents. It also includes responses to the set of individual questions that comprise the ‘access to care’ dimension, with some questions targeted to patients who received specific treatments (IV che-motherapy and radiation therapy). Responses are presented for all BC patients in comparison to the Canadian benchmark, where it is available. The indi-vidual questions are ordered from highest to lowest scores for BC patients, and within treatment groups.In comparison to patients in other parts of Canada, BC patients reported an equivalent score on the overall dimension of ‘access to care’. Many of the responses to individual questions were also equivalent (e.g. received all services needed in past 6 month; pro-viders did everything to make wait comfortable). On other questions related to wait for first treatment and travel concerns, BC residents had lower ratings. On a single question related to wait for radiation treatment, BC patients rated their experiences more positively than other Canadian cancer patients.* Statistically significant difference from the Canadian benchmark.† A Canadian benchmark is not available because the question or response options used in BC are different from those used in other provinces.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 5Figure 16: Physical comfort dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark72.0*78.2BCCanadaDimension composite scoreProviders did everything to control pain/discomfortBCCanada61.9*71.8BCCanadaCanada80.778.3BCCanada80.980.2BC 78.8*82.0BCCanada78.481.0Providers did everything to help w/ IV chemo side effectsFor patients who received IV chemotherapy:Told how to manage IV chemo side effectsProviders did everything to help w/radiation side effectsTold how to manage any radiation side effectsFor patients who received radiation:Evaluations of ‘physical comfort’ dimensionFigure 16 presents detailed information about the ‘physical comfort’ dimension, the dimension receiving the third highest level of percent positive responses from BC residents. It also includes responses to the set of individual questions that comprise the dimension, with some questions targeted to patients who received specific treatments (IV chemotherapy and radiation therapy). Responses are presented for all BC patients in comparison to the Canadian benchmark. The indi-vidual questions are ordered from highest to lowest scores for BC patients, and within treatment groups.In comparison to patients in other parts of Canada, BC patients BC patients reported a lower score on the overall ‘physical comfort’ dimension. On the individual question about whether providers did everything to control pain and discomfort, BC residents reported markedly lower scores than other Canadian cancer patients.On questions related to side effects of IV chemo-therapy, BC patients reported experiences that were equivalent to other Canadian cancer patients.On questions related to side effects related to radiation therapy, BC residents reported lower levels of positive experiences in relation to Canadian cancer patients.* Statistically significant difference from the Canadian benchmark.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32 6Figure 17: Coordination and continuity dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark66.2*68.1BCCanadaBCCanadaBCCanadaBCCanadaCanada80.1*85.577.7*84.975.876.8BCCanadaCanada66.2*58.758.4*BCCanada67.1*65.4BC60.3BCCanada53.4*58.5BC 50.9*53.4Dimension composite scoreKnew who was in charge for each therapyProviders knew enough re: cancer/blood disorder therapiesNever given confusing/conflicting infoProviders always aware of test resultsFamily doctor knew enough re: cancer/blood disorder careAlways knew who to go to w/questionsAlways knew next step in careProviders always aware of medical historyEvaluations of ‘coordination and continuity’ dimensionThe ‘coordination and continuity’ dimension received the fourth highest level of percent positive responses from BC residents. Figure 17 presents detailed information about the set of individual questions that comprise this dimension. Responses are presented for all BC patients in comparison to the Canadian bench-mark. The individual questions are ordered from highest to lowest scores for BC patients.BC patients reported a positive score of 66.2% on the ‘coordination and continuity’ dimension, a signifi-cantly lower result in comparison to the Canadian benchmark of 68.1%. Responses to individual questions ranged from a high of 80.1 to a low of 50.9 percent positive on the set of questions that comprise this dimension. In responses to two of the questions (‘family doctor knew enough…’, and ‘providers always aware of test  results’), BC patients rated their care more positively than other Canadian cancer patients. However, responses to five of the questions were significantly lower when compared to responses from other Cana-dian cancer patients.* Statistically significant difference from the Canadian benchmark.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 7Figure 18: Information, communication and education dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark60.2*66.9BCCanadaBCCanadaBCCanadaBCCanadaCanada77.2*81.972.0*73.871.5*74.2BCCanadaCanada57.8*65.6BCCanada67.4*72.1BC 57.2*64.4BCCanada46.5*57.6BC 45.1*59.9Dimension composite scoreProvider explained why tests needed in an understandable wayProvider explained test results in an understandable wayComfortable talking w/providers re: clinical trials/new treatmentsGiven enough information about therapiesGiven enough info re: possible physical changesSomeone discussed treatments with patientGiven enough info re: nutritional needsGiven enough info re: possible changes in energy levelCanadaBC 36.8*48.4Given enough info re: possible changes in work/usual activitiesEvaluations of ‘information, communication and education’ dimensionFigure 18 presents detailed information about the ‘information, communication and education’ dimen-sion, which received the second lowest level of percent positive responses from BC residents. It also includes responses to the set of individual questions that com-prise the dimension. Responses are presented for all BC patients in comparison to the Canadian bench-mark. The individual questions are ordered from highest to lowest scores for BC patients.BC patients reported a positive score of 60.2% on the ‘information, communication & education’ dimen-sion, a significantly lower result in comparison to the Canadian benchmark of 66.9%. BC patient responses to all of the individual questions were lower than the Canadian benchmark, reflecting poorer performance on all aspects of this dimension of patient-centred care. * Statistically significant difference from the Canadian benchmark.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 32 8Figure 19: Emotional support dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark46.7*54.0BCCanadaBCCanadaBCCanadaBCCanada Not available†Canada68.2*72.462.3*72.150.9BCCanadaCanada35.5*48.6BCCanada42.1*46.4BC 34.1*42.4BCCanada28.4*33.5BC 26.9*42.0Dimension composite scoreTold of diagnosis in sensitive mannerProvider went out of way to help/make feel betterAlways given help re: figuring out how to pay for extra costsGiven enough info re: possible changes in sexual activityReferred to provider for anxieties/fears at point of diagnosisGiven enough info re: possible emotional changesGiven enough info re: possible changes in relationshipsPut in touch w/ providers for anxieties/fears in past 6 monthsEvaluations of ‘emotional support’ dimensionFigure 19 presents detailed information about the ‘emotional support’ dimension, which received the lowest level of percent positive responses from BC residents. It also includes responses to the set of indi-vidual questions that comprise the ‘emotional support’ dimension. Responses are presented for all BC patients in comparison to the Canadian benchmark with the exception of a single question. The individual questions are ordered from highest to lowest scores for BC patients.BC patients reported a positive score of 46.7% on the ‘emotional support’ dimension; this result is signifi-cantly lower than the Canadian benchmark of 54.0%. BC patient responses to all of the individual questions were lower than the Canadian benchmark, reflecting poorer performance on all aspects of this important dimension of patient-centred care. * Statistically significant difference from the Canadian benchmark.† A Canadian benchmark is not available because the question or response options used in BC are different from those used in other provinces.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H2 9Figure 20: Ten questions with highest ratings in BC, 2012/13, compared to Canadian benchmark1.4 Areas of strength reported by  BC patientsFigure 20 presents the ten most highly rated items on the 2012/13 survey, that is, those where BC cancer patients provided the highest percent positive responses to individual survey questions. These items are presented in order, from highest to lowest. Where comparable results are available for patients from other parts of Canada, these are also presented. Where comparisons are not possible for questions that were specific to the BC survey, this is noted as ‘not available’. The list of top rated items covers a range of issues related to patient care, from those related to principles of providing care, to patient safety, to patient/provider interaction, to issues of trust.Six of the items relate to questions that appear only on the BC version of the survey. For the other four items, a Canadian benchmark is available; in all of these cases, BC cancer patients report lower levels of posi-tive experiences than other Canadian cancer patients.* Statistically significant difference from the Canadian benchmark.† A Canadian benchmark is not available because the question or response options used in BC are different from those used in other provinces.BCCanada Not available†Not available†Not available†Not available†Not available†Not available†BCCanadaBCCanadaBCCanadaCanadaBCCanadaCanadaBCCanadaBCBCCanadaBCIdentity confirmed before care provided (eg. medications)Knew who to talk to when had questions/concernsFamily/friends had opportunity to be involved in care/treatmentTreated w/ dignity/respect by providersTold how to take medications in an understandable wayFelt could trust providers w/ confidential infoFamily/self was not injured due to medical errorProviders were respectful of cultureHave confidence/trust in doctorsCanadaBC 85.0*89.7Providers did everything to treat cancer/blood disorder94.794.692.4*94.392.4*94.288.7*91.589.888.685.585.2P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 33 0Figure 21: Ten questions with lowest ratings in BC, 2012/13, compared to Canadian benchmark1.5 Areas for improvement reported by BC patientsFigure 21 presents the ten items that received the lowest percent positive ratings on the 2012/13 survey. These items are presented in order, from lowest to highest. Where comparable results are available for patients from other parts of Canada, these are also presented. Where comparisons are not possible for questions that were specific to the BC survey, this is noted as ‘not available’. The list of lowest rated items covers a range of issues related primarily to social and emotional needs  of patients. One of the items appears only on the BC version of the survey; for the other nine items, a Canadian benchmark is available. In all nine of these items, BC cancer patients report much lower levels of positive experiences than other Canadian cancer patients; all of these are statistically different.* Statistically significant difference from the Canadian benchmark.† A Canadian benchmark is not available because the question or response options used in BC are different from those used in other provinces.26.9*BCCanadaBCCanadaBCCanadaBCCanada28.4*29.2*39.033.542.034.1*42.4BCCanada36.8*48.448.6BCCanada35.5*Not available†Put in touch w/ providers for anxieties/fears in past 6 monthsGive enough info re: possible changes in relationshipsProvider explained wait for first consultation appointmentGive enough info re: possible emotional changesReferred to provider for anxieties/fears at point of diagnosisGive enough info re: possible changes in work/usual activitiesCanadaBC 45.1*Given enough info re: possible changes in energy levels59.9CanadaBC 42.1*Give enough info re: possible changes in sexual activity46.4CanadaBC 47.2Spiritual needs metCanadaBC 46.5*57.6Given enough info re: nutritional needsU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H3 12. How have patient experiences changed since 2005/06?The 2012/13 survey was the second survey of cancer patients that has been conducted in British Colum-bia. Given the many changes in cancer care that have taken place in the six years since the previous survey, this section focuses on identifying changes that may be reflected in patient experiences.2.1 Approaches to comparing 2005/06 and 2012/13 survey responsesThe 2012/13 survey was designed and implemented with the goal of making it comparable to the 2005/06 survey. However, in response to many of the changes taking place in the delivery of cancer care since that time, the 2012/13 survey was modified in a number of ways, as outlined in the introduction and  summarized below. The 2012/13 survey was expanded to include both patients with a primary diagnosis of cancer and those who had a myeloproliferative blood disorder. From Table 1, this latter group represents approximately 6.9% of 2012/13 BC cancer outpatients. The two surveys therefore differ to some degree in terms of the types of patients who are represented.The 2012/13 survey includes a subset of patients who received IV chemotherapy, radiation therapy, or both on an outpatient basis; this approach was consistent with that used for the 2005/06 survey, and results for these two groups are comparable over time. In addi-tion, the 2012/13 survey was extended to include a sample of patients who received only non-IV therapy. For the purposes of comparisons between the two surveys, the analyses have been restricted to the ‘replication group’, the subset of the 2012/13 survey respondents that is comparable to those surveyed in 2005/06 (with the exception noted in the  paragraph above). In addition, because newly developed questions were added to the 2012/13 survey, not all questions can be compared in the two sets of survey responses. In these cases, figures indicate that the question was not avail-able in the 2005/06 survey.Differences that are statistically significant across the two surveys have been noted on the graphs. In com-parison to Section 1, because of the smaller number of observations involved in this section, fewer com-parisons are statistically significant. In spite of this, differences that are statistically significant may still involve actual differences that are relatively small. In this section we have relied on both statistical signifi-cance and the magnitude of differences to identify important issues.P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 33 2Figure 22: Overall rating of outpatient cancer care in BC, by health authority, 2012/13 replication group compared to 2005/062.2 Overall evaluations of care, 2012/13 vs. 2005/06Using the ‘overall rating’ question, which asks patients to think about the outpatient care in the facility where they received treatment in the preceding six months, Figure 22 provides information about the extent to which BC patients’ reported satisfaction has changed from the survey in 2005/06 to the survey in 2012/13. This information is presented for BC overall and for each health authority.Responses from BC cancer patients in 2005/06 indicate that in response to this question, 96.8% of patients provided a positive rating. In 2012/13, that figure increased to 97.5%, an increase of 0.7 percent-age points, indicating an improvement in ratings among BC IV chemotherapy and radiation therapy outpatients. This result was statistically significant dif-ference, likely due to the large numbers involved. BC cancer patients in Interior Health had higher levels of positive responses in 2012/13 as compared to 2005/06 (96.3% vs. 92.0%). There were no meaning-ful changes in responses to this question from cancer outpatients in other health authorities.* Statistically significant difference from the 2005/06 score.97.5*96.82012/132005/062012/132005/062012/132005/062012/132005/062012/132005/062012/132005/062012/132005/0696.3*92.094.394.996.797.997.596.396.193.598.098.0Individual question scoreOverall quality of care in past six monthsBC overallInterior HealthFraser HealthVancouver Coastal HealthIsland HealthNorthern HealthProvincial Health Services AuthorityU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H3 3Figure 23: Overall rating of outpatient cancer care in BC, by health authority, 2012/13 replication group compared to 2005/062.3 Overall evaluations based on combined dimensions of care, 2012/13 vs. 2005/06Using the summary measure of patient-centred dimensions of care, Figure 23 provides information about the extent to which BC patients’ reported expe-riences have changed from the survey in 2005/06 to the survey in 2012/13. This information is presented for BC overall and for each health authority.Responses from BC cancer patients in 2005/06 indicate that 64.6% of patients reported a positive experience on the summary measure of patient-centred dimensions of care. In 2012/13, this score increased to 66.0%, a small difference of 1.4 points that is not statistically significant. Across health authorities, there were no statisti-cally significant changes in the summary measure of patient-centred dimensions of care in 2012/13 as compared to 2005/06.* Statistically significant difference from the 2005/06 score.66.064.62012/132005/062012/132005/062012/132005/062012/132005/062012/132005/062012/132005/062012/132005/0667.062.764.063.166.362.764.166.765.463.066.265.3BC overallInterior HealthFraser HealthVancouver Coastal HealthIsland HealthNorthern HealthProvincial Health Services AuthorityP A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 33 4Figure 24: Dimension scores in BC, 2012/13 replication group compared to 2005/062.4 Dimension scores 2012/13 vs. 2005/06Figure 24 shows changes in the individual dimensions that underlie the ‘combined dimensions of care’ evalu-ations between the 2005/06 and 2012/13 surveys.Four of the dimensions changed only to a small degree, with changes ranging from 0.1 to 1.1 points in a positive direction. These changes were not statisti-cally significant.For two of the dimensions, there were larger changes. Scores for ‘coordination and continuity’ increased by 2.0 points, from 64.5% in 2005/06 to 66.5% in 2012/13, a difference that was statistically significant. Scores for the emotional support dimension, which had the lowest score (45.7%) in 2005/06, increased by 3.4 points, to 49.1% in 2012/13. This change was both large and significant.* Statistically significant difference from the 2005/06 score.† This score was reported differently in the 2007 report. Some questions that were included in scores for 2005/06 were not included in 2012/13, so 2005/06 scores in this report have been recalculated to be as compa-rable as possible to 2012/13 scores.76.876.7†2012/132005/06Respect for patient preferences73.071.9†2012/132005/06Access to care77.477.22012/132005/06Physical comfort66.5*64.52012/132005/06Coordination and continuity62.362.2†2012/132005/06Information, communication and education49.1*45.7†2012/132005/06Emotional supportU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H3 5Figure 25: Ten questions with highest ratings in BC, 2012/13 replication group compared to 2005/062.5 Areas of strength, 2012/13 vs. 2005/06Figure 25 presents the ten most highly rated items on the 2012/13 survey (those where BC cancer patients provided the highest percent positive responses to individual survey questions). These ten items differ from the ten highly rated items presented in Figure 20 because these are the ten most highly rated items for the ‘replication group’ (patients who received IV chemotherapy and/or radiation therapy). Scores for these items are presented in order, from highest to lowest. Where comparable scores are available for questions from the 2005/06 survey, they are presented. Where comparisons are not possible because the question did not appear in the 2005/06 survey, this is noted as ‘not available’.Seven of the items are comparable between the two surveys; the other three items appear only on the 2012/13 version of the survey. As in Figure 20, the list of top rated items covers a range of issues related to patient care, from those related to principles of providing care, to patient safety, to patient/provider interaction, to issues  of trust.One of the 2012/13 items (providers were respectful of culture), is significantly different from the 2005/06 results and appears to have declined by 9.2 points. However, this question was answered by only a per-centage of all respondents in both surveys. Only those who had answered a previous question indicating that they regard cultural needs as an important part of their care were invited to answer this question. The proportion of respondents falling into this category decreased between the two surveys, suggesting that the patients answering the questions in 2005/06 and 2012/13 were likely quite different.* Statistically significant difference from the 2005/06 score.† The 2005/06 score is not available because the question or response options changed between 2005/06 and 2012/13 or because the ques-tion was new for 2012/13.Not available†2012/132005/0695.8Knew who to talk to when had questions/concernsNot available†2012/132005/0688.6Told how to take medications in an understandable way88.4Providers did everything to treat cancer/blood disorder2005/062012/1387.6Not available†2012/132005/06Identity confirmed before care provided (eg. medications)96.52012/132005/0693.1Family/friends had opportunity to be involved in care/treatment92.12012/132005/0692.5Treated w/ dignity/respect by providers92.32012/132005/0688.2Felt could trust providers w/ confidential info87.82005/062012/13 86.9Family/self was not injured due to medical error86.12012/132005/0685.3*Providers were respectful of culture94.52005/062012/13 85.9Have confidence/trust in nurses85.8P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 33 6Figure 26: Ten questions with highest ratings in BC,  2012/13 replication group compared to 2005/062.5 Areas for improvement, 2012/13  vs. 2005/06Figure 26 presents the ten items that received the lowest percent positive ratings on the 2012/13 survey for the ‘replication group’ of patients who received IV chemotherapy and/or radiation. These items are presented in order, from lowest to highest. Where comparable scores are available for questions from  the 2005/06 survey, they are presented. Where com-parisons are not possible because the question did not appear in the 2005/06 survey, this is noted as  ‘not available’. Seven of the items are comparable between the two surveys; the other three items appear only on the 2012/13 version of the survey. As in Figure 21, the list of lowest rated items covers a range of issues related primarily to social and emotional needs of patients.Five of the seven 2012/13 comparable items are statistically different from 2005/06 results. Responses for four of them suggest improvement, with positive changes ranging from 2.6 percentage points (for ‘given enough information re possible changes in relation-ships’) to 8.0 (for ‘always given help re figuring out how to pay for extra costs’). Change for the fifth item (‘given enough info re nutritional needs’) is negative.* Statistically significant difference from the 2005/06 score.† The 2005/06 score is not available because the question or response options changed between 2005/06 and 2012/13 or because the ques-tion was new for 2012/13.Not available†Not available†Not available†2012/132005/062012/132005/062012/132005/062012/132005/0627.633.92012/132005/0629.230.2*37.037.2*38.7Provider explained wait for first consultation appointmentGive enough info re: possible changes in relationshipsPut in touch w/ providers for anxieties/fears in past 6 monthsGive enough info re: possible emotional changesReferred to provider for anxieties/fears at point of diagnosis2012/132005/06 39.840.8Given enough info re: possible changes in sexual activity2012/132005/06 44.243.2Given enough info re: possible changes in work/usual activities2005/062012/1353.850.6*Given enough info re: nutritional needs52.0*Providers always aware of medical history2005/062012/1347.651.2*Always given help re: figuring out how to pay for extra costs2005/062012/1343.2U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H3 7Discussion and conclusionsBC has joined other Canadian provinces in conduct-ing surveys to understand the experiences of patients in the health care system, with outpatient cancer care as an important area of focus. The purpose of this report is to describe British Columbians’ perceptions and reported experiences with outpatient cancer care, to compare their responses to those of other Canadi-ans, and to determine if there have been changes in patient experiences for comparable BC patients who were surveyed in 2005/06. This is the second report to provide descriptive information about this sector of the health care system (6).The response rate for the 2012/13 survey was 48.7%, as compared to a response rate of 60.1% in 2005/06. While this response rate appears to be low, it is within the range for similar surveys undertaken in other Canadian provinces in 2011 and 2012. Survey response rates have been declining over time in an era when citizens receive requests for information from many directions. In terms of demographics, people 60 years and older (73.8%), and females (63.8%), represent the largest proportion of BC cancer patients. Among all BC cancer outpatients, just over 30% were receiving more traditional forms of treatment that rely on radiation therapy and/or IV chemotherapy. Almost 70% were being treated with non-IV therapy during the survey period, demonstrating the importance of including this group in a survey of patient experiences with outpatient cancer treatment.In comparisons to patients included in the Canadian benchmark, BC patients are different in a number of ways. They report better health status and lower levels of pain when compared to patients who responded to the outpatient cancer survey in other provinces. They also differ in the nature of the care they are receiv-ing. For example, in comparison to other Canadian respondents to the survey, BC cancer outpatients appear to have been living with a cancer diagnosis for a longer period of time. They were less likely to iden-tify a cancer specialist as the person most involved in treatment planning, and more likely to identify a family doctor or a surgeon as playing that role. They were less likely to have had one or more hospital stays (19.9% vs. 34.1%). Evaluations of patient satisfactionWhen asked to evaluate their experiences with outpatient cancer care using a standard approach to measuring patient satisfaction, BC cancer outpatients provided strongly positive ratings. Fully 97.5% of cancer outpatients provided an ‘overall rating’ of the facility where they received treatment in the past six months in one of three positive categories (i.e. excel-lent, very good, or good), with 58.5% of them rating their care as excellent. These ratings are impressive when considered in comparison to those for other sectors of the BC health care system. For example, in a 2011/12 survey of acute care, 92% of patients provided positive ratings of their experiences, with only 38% of them rating their care as excellent (7).Across health authorities, there was some variability in scores (94.9% for Fraser Health to 98.0% for PHSA), but most were close to the result reported by BC patients overall. Overall ratings of patient satisfaction were also very high for the subset of BC cancer patients that were surveyed in both 2005/06 and 2012/13 (i.e. those receiving radiotherapy and/or IV chemo-therapy). Since 2005/06, overall ratings of care for this group increased from 96.8% to 97.5% (i.e. 0.7% P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 33 8more patients assigned positive ratings in 2012/13 compared to the previous survey). Assessments of patient satisfaction with outpatient cancer care in BC therefore suggest a pattern of high, and increasingly positive ratings over time. Cancer outpatients who were surveyed in other Canadian provinces during 2011 and 2012 provided slightly higher ratings in comparison to BC respon-dents 98.0% vs. 97.5%. This may reflect slightly lower satisfaction among BC cancer outpatients, suggest-ing there is room for improvement. Alternatively, it might be related to differences in the composition of respondents in the BC survey, especially the inclusion of almost 70% of patients who received only non-IV therapy during the survey period. Evaluations of patient-centred careIn contrast to the very positive picture that emerged when overall ratings of satisfaction were used, a more challenging picture appeared when survey questions probed deeper into areas that matter to patients. These measures yielded lower rates of positive responses. On the ‘providers did everything’ question, BC cancer patients had a score of 85.0%, a difference of 12.5 percentage points lower than the score for the ‘overall rating’ of patient satisfaction. Still lower scores were registered for the ‘would recommend to friends and family’ question, for which BC patients had a percent positive score of 81.6, which is 15.9 points lower than the ‘overall rating’ question. The ‘combined patient-centred dimensions’ measure, which assessed the six dimensions of care, had the lowest scores among all four approaches. For this measure, BC patients had a score of 63.8%, a drop of 33.7 points from the ‘overall rating’ of patient satisfaction. Where there is a Canadian benchmark, ratings for BC cancer patients were consistently lower. Again, this may reflect slightly lower ratings of experience among BC cancer out-patients, or it might be related to differences in the composition of respondents in the BC survey.Across health authorities, for the ‘providers did everything’ and the ‘combined patient-centred dimen-sions’, there was some variability across scores, but most were close to the results reported by BC patients overall. The exception was the ‘would recommend to family and friends’ question, where percent positive responses ranged from 66.2% for patients in Island Health, to 87.0% for PHSA patients.When overall evaluations of patient-centred care were compared for the subset of BC cancer patients who were surveyed in both 2005/06 and 2012/13 (i.e. those receiving radiotherapy and/or IV chemotherapy), the pattern was one of relative stability. Evaluations of individual patient-centred dimensions of careWhen the individual dimensions of patient-centred care were compared, there was a considerable range of scores, from a high of 75.8 for ‘respect for patient pref-erences’ to a low of 46.7% for ‘emotional support’. BC residents gave reasonably high ratings to some aspects of their care; they gave their highest percent positive ratings to ‘respect for patient preferences’, followed by the ‘access to care’ and ‘physical comfort’ dimensions. The three dimensions that received the lowest ratings were ‘emotional support’; ‘coordination and continu-ity’; and ‘information, communication and education’. When compared to the Canadian benchmark, BC had significantly lower scores on a number of these individual dimensions, a result that is consistent with the ‘overall rating’ scores. Again, this may reflect lower atings of experience among BC cancer outpatients, or it might be related to differences in the composition of respondents in the BC survey. U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H3 9Across health authorities, there was some variability, but most scores were close to the results reported by BC patients overall. When individual patient-centred dimensions of care were compared for the subset of BC cancer patients who were surveyed in both 2005/06 and 2012/13 (i.e. those receiving radiotherapy and/or IV chemotherapy), there was positive change in two of the dimensions. Scores for the ‘coordination and continuity’ dimension increased by 2.0 points (from 64.5 to 66.5), and scores for the ‘emotional support’ dimension increased by 4.7 points from (45.7 to 49.1). These represent significant improvements in areas of weakness that were identified in the 2005/06 survey. In other dimensions, the pattern was one of  relative stability.Areas of strengthIn addition to high levels of satisfaction and reason-ably high ratings of some dimensions of care, some specific items received high ratings. The ten most highly rated items on the 2012/13 survey cover a range of issues, from those related to principles of providing care, to patient safety, to patient/provider interaction, to issues of trust. These represent areas of strength as viewed from the perspective of BC cancer outpatients. For the four of these ten items where a Canadian benchmark was available, BC cancer patients reported lower levels of positive experiences.When responses for the ‘replication group’ were com-pared to the ten most highly rated items for 2005/06 respondents, seven of the items were comparable between the two surveys. The list covered a similar range of issues to those identified above, and for the most part, patterns did not change between the two surveys. Areas of strength have therefore remained stable across the two surveys.Areas for improvementThe ten items that received the lowest percent positive ratings on the 2012/13 survey cover a range of issues related primarily to social and emotional needs of patients. These represent areas where there is room for improvement as viewed through the eyes of BC  cancer outpatients.For the nine of these ten items where a Canadian benchmark was available, BC cancer patients reported lower levels of positive experiences.When responses for the 2012/13 ‘replication group’ were compared to responses in the 2005/06 survey, five of seven comparable items were statistically dif-ferent. Responses for four items suggest improvement, with positive changes ranging from 2.6 percentage points (for ‘given enough information re possible changes in relationships’) to 8.0 (for ‘always given help re figuring out how to pay for extra costs’). Change for the fifth item (‘given enough info re nutritional needs’) is negative. In summary, between the two surveys, there has been significant improvement in some of the areas that 2005/06 respondents identified as low areas of performance. This represents important progress.Implications of the findingsFindings from BC’s outpatient cancer survey suggest that BC cancer outpatients are highly satisfied with the care that they receive, and that there is a pattern of high, and increasingly positive ratings of patient satisfaction over time. However, when the focus is shifted to aspects of care that more deeply reflect patient experiences, ratings of care are lower. Patients give much lower ratings to aspects of care that reflect P A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 34 0attention to their social and emotional needs; these include ratings for coordination and continuity; information, communication and education; and emotional support. In 2012/13, only 46.7% of BC cancer outpatients gave positive ratings to the emo-tional support dimension of their care; this was an improvement from 2005/06, when the score for this dimension was 45.7. The results of this survey suggest patterns of overall stability, with improvement in several areas since 2005/06. While there have been declines in some aspects, improvement has occurred in some of the areas of greatest weakness. Results for the 2012/13 survey suggest that BC cancer outpatients give slightly, but consistently, lower ratings of their care in comparison to a Canadian benchmark that includes cancer patients in other provinces. These patterns may reflect slightly lower ratings among BC cancer outpatients. Alternatively, they may be related to differences in the composition of respondents in the BC survey, especially the inclusion of almost 70% of patients who received only non-IV therapy during the survey period. Further study to understand the experiences of the non-IV therapy group, as compared to other groups would provide additional information about this issue.Despite progress in some areas, the current survey results suggest that there is still considerable opportu-nity to improve many aspects of outpatient cancer care in BC. Improving patient-centredness of health care represents difficult, but important terrain. The deep challenge is to understand and embrace the messages that are contained within this report—some of which reflect success, and others that reflect the challenges of being a patient in very complex system. There is now widespread understanding that patients’ views such as those contained in this report provide essen-tial information to guide us in achieving high quality health care.U B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H4 11. Berenson RA, Pronovost PJ, Kumholz HM. Measure patient experience with care and patient-reported outcomes as ends in themselves. The Health Care Blog; 2013 [cited 17 December 2013]. Available from: http://thehealthcareblog.com/blog/2013/05/26/4-mea-sure-patient-experience-with-care-and-patient-reported-outcomes-as-ends-in-themselves/.2. Canadian Partnership Against Cancer. The 2012 Cancer System Performance Report. Toronto, ON: Canadian Partnership Against Cancer; 2012. Available from: http://www.partnershipagainstcancer.ca/wp-content/uploads/The-2012-Cancer-System-Performance-Report.pdf.3. Murray, MA. Personal communication, 2013.4. Statistics Canada. Table 105-0501 - Health indicator profile, annual estimates, by age group and sex, Canada, provinces, territories, health regions (2012 boundaries) and peer groups, occasional, CANSIM (database) [cited 17 December 2013].5. Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL, editors. Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care. San Francisco: Jossey-Bass; 1993.6. Watson DE, Mooney D, Peterson S. Patient experiences with Ambulatory Cancer Care in British Columbia, 2005/06. Vancouver, BC: UBC Centre for Health Services and Policy Research; 2007. Available from: http://www.health.gov.bc.ca/library/publications/year/2007/OncologySurvey/UBC_OncologyReport.pdf.7. Murray MA. Patient experiences with acute inpatient care in British Columbia, 2011/12. Victoria, BC: BC Ministry of Health; 2012. Available from: http://www.health.gov.bc.ca/library/publications/year/2012/patient-experiences-acute-inpatient.pdf.ReferencesP A T I E N T  E X P E R I E N C E S  W I T H  O U T P A T I E N T  C A N C E R  C A R E  I N  B R I T I S H  C O L U M B I A ,  2 0 1 2 / 1 34 2Appendix 1: Participating facilities by 2012/13 peer groupHealth authorityIncluded in 2005/06Included in 2012/13BC Cancer Agency Regional Cancer CentresRegional Cancer Centres provide a full range of radiation and systemic therapy for cancer patients.Abbotsford Centre Provincial Health Services Authority No YesSindi Ahluwahlia Hawkins Centre for the Southern Interior Provincial Health Services Authority Yes YesFraser Valley Centre Provincial Health Services Authority Yes YesVancouver Centre Provincial Health Services Authority Yes YesVancouver Island Centre Provincial Health Services Authority Yes YesBC Cancer Agency Satellite Centres (Level IV) Satellite Centres are staffed by a BC Cancer Agency medical oncologist and/or general practitioner, chemotherapy certified oncology nurses, oncology trained pharmacists and pharmacy staff. Satellite Centres prepare and deliver oral and parenteral outpatient chemotherapy agents, including first dose treatment and the full spectrum of outpatient chemotherapy protocols.East Kootenay Regional Hospital Interior Health Yes YesPenticton Regional Hospital Interior Health Yes YesRoyal Inland Hospital Interior Health Yes YesVernon Jubilee Hospital Interior Health Yes YesSurrey Memorial Hospital Fraser Health No YesNanaimo Regional General Hospital Island Health Yes YesRoyal Jubilee Hospital Island Health Yes YesUniversity Hospital of Northern BC Northern Health Yes YesFull Service Community Chemotherapy Centres (Level lll)Full Service Community Chemotherapy Centres are located in a general community hospital and deliver outpatient oral and parenteral cancer chemo-therapy as well as provide medical and nursing support for cancer patients. Staff are able to manage all types of outpatient IV and oral chemotherapy protocols, including first cycle, and are trained in care and management of central venous access devices. 100 Mile House District Hospital Interior Health Yes YesBoundary Hospital Interior Health Yes YesCariboo Memorial Hospital Interior Health Yes YesKootenay Boundary Regional Hospital Interior Health Yes YesKootenay Lake Hospital Interior Health Yes YesShuswap Lake General Hospital Interior Health Yes YesBurnaby Hospital Fraser Health Yes YesRidge Meadows Hospital Fraser Health Yes YesRoyal Columbian Hospital Fraser Health Yes YesLions Gate Hospital Vancouver Coastal Health Yes YesPowell River General Hospital Vancouver Coastal Health Yes YesRichmond Hospital Vancouver Coastal Health Yes YesSt. Mary’s Hospital Vancouver Coastal Health Yes YesSt. Paul’s Hospital Vancouver Coastal Health Yes YesCampbell River and District Hospital Island Health Yes YesCowichan District Hospital Island Health Yes YesSt. Joseph’s General Hospital Island Health Yes YesBulkley Valley District Hospital Northern Health Yes YesDawson Creek & District Hospital Northern Health Yes YesFort St John Hospital Northern Health Yes YesU B C  C E N T R E  F O R  H E A LT H  S E R V I C E S  A N D  P O L I C Y  R E S E A R C H4 3Health authorityIncluded in 2005/06Included in 2012/13GR Baker Memorial Hospital Northern Health Yes YesKitimat General Hospital Northern Health Yes YesMills Memorial Hospital Northern Health Yes YesPrince Rupert Regional Hospital Northern Health Yes YesQueen Charlotte Islands General Hospital - Haida Gwaii Cancer Care Northern Health Yes YesSt. John’s Hospital Northern Health No YesBasic Community Chemotherapy Services (Level ll)Basic Community Chemotherapy Services are limited facilities with restrictions on types of chemotherapy treatments, specialized equipment or special-ized skill. A basic community chemotherapy service typically consists of at least a chemotherapy certified oncology nurse. One or more physicians may be involved in the medical management of patients on chemotherapy. It may not be advisable to do first cycle in these centres.Squamish General Hospital Vancouver Coastal Health Yes YesCommunity Chemotherapy Services (Level l)Community Chemotherapy Services provide minimal services. These are hospital pharmacies that dispense some anticancer drugs. No formalized cancer care team is available. BC Cancer Agency does not recommend intravenous chemotherapy be provided by these facilities.Abbotsford Regional Hospital Fraser Health Yes NoChilliwack General Hospital Fraser Health Yes YesDelta Hospital Fraser Health Yes NoEagle Ridge Hospital Fraser Health No YesLangley Memorial Hospital Fraser Health Yes YesMission Hospital Fraser Health Yes NoPeace Arch District Hospital Fraser Health No YesBella Coola Hospital Vancouver Coastal Health No YesCumberland Health Centre Island Health No YesSaanich Peninsula Hospital Island Health No YesVictoria General Hospital Island Health No YesWestcoast General Hospital Island Health Yes YesFacilities not included in a peer groupFacilities that administered but did not dispense chemotherapy.Arrow Lakes Hospital Interior Health Yes NoCastlegar and District Community Health Centre Interior Health Yes NoNicola Valley General Hospital Interior Health Yes NoQueen Victoria Hospital Interior Health Yes NoSlocan Community Health Centre Interior Health Yes NoVictoria Community Health Centre Interior Health Yes NoFort Nelson General Hospital Northern Health Yes NoBC Cancer Agency partner programVancouver General Hospital; Leukemia/BMT of BC Vancouver Coastal Health Yes Yes Note: Facilities are organized by peer group. Where facilities are included in both years but changed peer groups, they are listed within their 2012/13 peer group. Where facilities are included only in 2005/06, they are listed within the peer group that they belonged to in 2005/06.UBC Centre for Health Services and Policy ResearchThe University of British Columbia201-2206 East MallVancouver, B.C. Canada V6T 1Z3Tel:  604.822.4969Fax:  604.822.5690Email: enquire@chspr.ubc.cawww.chspr.ubc.caAdvancing world-class health services and policy research, training and data resources on issues that matter to Canadians

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