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Development of a survey instrument to investigate the primary care factors related to differences in… Rose, Peter W; Hamilton, Willie; Aldersey, Kate; Barisic, Andriana; Dawes, Martin; Foot, Catherine; Grunfeld, Eva; Hart, Nigel; Neal, Richard D; Pirotta, Marie; Sisler, Jeffrey; Thulesius, Hans; Vedsted, Peter; Young, Jane; Rubin, Greg Jun 17, 2014

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RESEARCH ARTICLE Open AccessDevelopment of a survey instrument toinvestigate the primary care factors related todifferences in cancer diagnosis betweeninternational jurisdictionsPeter W Rose1*, Willie Hamilton2, Kate Aldersey3, Andriana Barisic4, Martin Dawes5, Catherine Foot6, Eva Grunfeld7,8,Nigel Hart9, Richard D Neal10, Marie Pirotta11, Jeffrey Sisler12, Hans Thulesius13, Peter Vedsted14, Jane Young15,Greg Rubin16 and The ICBP Module 3 Working Group*AbstractBackground: Survival rates following a diagnosis of cancer vary between countries. The International CancerBenchmarking Partnership (ICBP), a collaboration between six countries with primary care led health services, wasset up in 2009 to investigate the causes of these differences. Module 3 of this collaboration hypothesised that anassociation exists between the readiness of primary care physicians (PCP) to investigate for cancer – the ‘threshold’risk level at which they investigate or refer to a specialist for consideration of possible cancer – and survival for thatcancer (lung, colorectal and ovarian). We describe the development of an international survey instrument to testthis hypothesis.Methods: The work was led by an academic steering group in England. They agreed that an online survey was themost pragmatic way of identifying differences between the jurisdictions. Research questions were identifiedthrough clinical experience and expert knowledge of the relevant literature.A survey comprising a set of direct questions and five clinical scenarios was developed to investigate thehypothesis. The survey content was discussed and refined concurrently and repeatedly with international partners.The survey was validated using an iterative process in England. Following validation the survey was adapted to berelevant to the health systems operating in other jurisdictions and translated into Danish, Norwegian and Swedish,and into Canadian and Australian English.Results: This work has produced a survey with face, content and cross cultural validity that will be circulated in allsix countries. It could also form a benchmark for similar surveys in countries with similar health care systems.Conclusions: The vignettes could also be used as educational resources. This study is likely to impact on healthcarepolicy and practice in participating countries.Keywords: Survey, Primary care, Cancer, Diagnosis, International* Correspondence: peter.rose@phc.ox.ac.uk1Department of Primary Care Health Sciences, New Radcliffe House, 2ndFloor, Radcliffe Observatory Quarter, University of Oxford, Woodstock Road,Oxford OX2 6GG, UKFull list of author information is available at the end of the article© 2014 Rose et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly credited. The Creative Commons Public DomainDedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article,unless otherwise stated.Rose et al. BMC Family Practice 2014, 15:122http://www.biomedcentral.com/1471-2296/15/122BackgroundThere are acknowledged differences in cancer survivalrates between countries with similar, primary healthcare led health systems [1]. The International CancerBenchmarking Partnership (ICBP) was established withthe aims of producing up-to-date survival estimates forselected cancers (breast, colorectal, lung, ovary), estab-lishing whether these differences have changed over timeand particularly to investigate possible causes of survivaldeficits identified [2]. It comprises five work streams,one of which (Module 3) is focused on primary care as-pects of cancer diagnosis. Specifically, this aspect relatesto the period between the patient’s first presentation to aprimary care practitioner (PCP) with a symptom of pos-sible oncological significance up to the time that a refer-ral is made to secondary care for further diagnosticinvestigation or for treatment, when the diagnosis ofcancer is made in primary care.There is increasing evidence that the time from firstpresentation of cancer to diagnosis is associated withprognosis [3-5]. The aim of Module 3 was to identify dif-ferences in primary care systems, structure or clinicalpractice that might contribute to known differences incancer outcomes between ICBP jurisdictions. Specificallythis related to factors that might influence delay in diag-nosis or referral within primary care [6]. Such factorscan be: 1) structural, such as access to investigations, ac-cess to specialist advice, 2) organisational, such as degreeof gatekeeping [7] and safety netting practices, and 3)knowledge and skills, such as the awareness of cancersymptoms and diagnostic skills among PCP.In order to undertake such a study, we needed a validand reliable measure of the differences in awareness,skills, structure and organisation between different pri-mary care settings. The aim of this paper is to presentthe development of this measurement tool and thechallenges that had to be addressed in the design andconduct of a survey of ICBP jurisdictions. The elevenjurisdictions, located in six countries, were England,Northern Ireland, Wales, Denmark, Norway, Sweden,British Columbia, Manitoba, Ontario, New South Walesand Victoria. Each jurisdiction contributed to the costsof the project and necessary ethical approvals.MethodsConceptualisationA group of primary care practitioners with expertise ofcancer diagnosis, drawing on input from a review of lit-erature, clinical experience and advice from a group ofthree international experts in the field, identified featuresand aspects of primary care systems, organisation andclinical practice which could contribute to internationaldifferences in the diagnosis of cancer [8-15]. From this aset of hypotheses was generated for testing (Figure 1).Features of primary care practice which were hypothe-sised as being influential included health system factors,diagnostic factors and referral factors as well as factorsrelated to PCP behaviours, attitudes, skills, knowledge,practice administration and incentives. Initially, screen-ing was also included but was then removed as the pri-mary aim was in explaining differences in symptomaticdiagnosis. The process was iterative, starting with all fac-tors that could be relevant and then reducing thesebased on perceived importance, relevance to all jurisdic-tions, and feasibility for testing in a survey format. Deci-sions were made on a consensus basis until there wasagreement on the form, structure and content of the sur-vey to fully investigate the hypothesis. Teleconferenceswere scheduled at regular intervals and active emailcommunication conducted to facilitate decision makingat all stages of the study.The features that were hypothesised to be importantin understanding and evaluating differences betweencountries were grouped into two main categories: gen-eral structural and cultural factors; and specific clinical,educational and organisational aspects. We chose tofocus on the features related to the individual PCP andtheir activity in relation to cancer diagnosis. An inter-national collaboration ethics approval was sought as re-quired in each jurisdiction (see Figure 1).To capture the differences in the generic aspects ofhealth care systems, the ICBP Programme Boardcommissioned a comparative analysis of health care sys-tems to contextualise the results of this study. This ‘sys-tem mapping’ exercise represents a comparison of thehealth care systems found in each jurisdiction relating tocancer diagnosis, is reported elsewhere (Brown S, RubinG, Castelli M, Hunter DJ, Erskine J, Vedsted P, Foot C:How might health care systems influence speed of can-cer diagnosis: a narrative review, in preparation).Key hypotheses of causes of delays to cancer diagnosis inprimary careTo ensure content validity was present for all jurisdic-tions, all features were discussed iteratively. Recognisingthat long surveys affect response and completion rates,consensus was reached between the collaborators on thefeatures considered to be the most important (Figure 1).Choice of data collection methodA number of methodologies were considered including aquestionnaire survey, system mapping, primary carenotes review, simulated cases, qualitative interviews orfocus groups with PCPs. We opted for survey method-ology delivered electronically, as the most easily repro-ducible in several countries and languages, the easiest inwhich to maintain consistency between countries and itsRose et al. BMC Family Practice 2014, 15:122 Page 2 of 8http://www.biomedcentral.com/1471-2296/15/122reasonable cost, whilst accessing the views of a largernumber of PCPs.Operationalisation and development of surveyThe survey was developed in two parts. The first partconsisted of five clinical vignettes to capture the aspectsof recognition of ‘low-risk but not no-risk’ symptoms,delay in instigating investigations and reluctance to con-sider an alternative diagnosis. Vignettes are recognisedto produce a better assessment of quality of care com-pared to record audit and they are faster to perform andmore economical [16]. Vignettes also predict physicianperformance as judged against consultations with trainedactors and can be a good measure of process of care[17]. They have also been validated in electronic formand used to measure care across different health systemsin California [18].The vignettes were based on common clinical presen-tations of possible lung (two vignettes), colorectal (twovignettes) and ovarian (one vignette) cancers. They wereevidence-based, using primary care evidence on symp-toms/sign and positive predictive values [19-22]. Breastcancer was omitted as we considered it very likely allwomen with a breast lump would be investigated, andthere is very little primary care evidence to support in-vestigation/non-investigation of other breast symptoms.Each vignette was presented in two or three “phases”,with the second and third phase of each vignette represent-ing a further presentation of the patient with additionalsymptoms or worsening severity of initial symptoms. Re-spondents were asked questions about management of thecases, using a drop-down menu for responses. The vignetteended if the respondent decided to refer the patient to hos-pital or undertake a test themselves that would confirm adiagnosis of cancer if present (chest xray or lung CT forlung vignettes, colonoscopy or abdominal CT for colorectalvignettes, abdominal CT or abdominal or trans-vaginalultrasound for the ovarian vignette). We labelled these‘near-definitive’ tests, while accepting each has a (small)false-negative and false-positive rate. Other common pri-mary care tests, such as haemoglobin or tumour markershave considerably less predictive accuracy, so if a respond-ent chose to perform one of these, the vignette continued.At the end of the vignette the respondent was given aFigure 1 Systematic, organisational and clinical factors within primary care which could contribute to international differences incancer diagnosis.Rose et al. BMC Family Practice 2014, 15:122 Page 3 of 8http://www.biomedcentral.com/1471-2296/15/122diagnosis for the patient in the vignette. The final out-come in three vignettes (2, 4 and 5) was cancer. In twovignettes (1 and 3) the final diagnosis was not cancer(i.e. bronchiectasis, symptoms cleared up). This wasdone to reduce the bias inherent in assessing clinicalperformance when respondents were aware the surveyrelated to cancer diagnosis. The assessment was basedon the management of each vignette and the final out-come was not relevant to this.The second part of the survey consisted of direct ques-tions addressing aspects of the responder’s local healthcare system and their own attitudes and education.Simple demographic data relating to gender, type ofPCP, time since qualification, location of training andrurality of practice were also identified.Collaborators in all jurisdictions agreed to develop acore survey relevant to all, but to allow individual juris-dictions to add a small number of additional locally rele-vant questions at the end of the survey. These additionalquestions were subject to approval based on the overalllength of the survey being acceptable to the central re-search team.Overseeing the instrument developmentAt every stage the development of the instrument wasdiscussed with the ICBP Programme Board and theModule 3 leads from each participating jurisdiction.The challenges of ensuring participation in teleconfer-ences across disparate time zones was successfullyaddressed by holding teleconferences with identicalagendas at two different times in the same day, withthe chair and programme management team present atboth to provide continuity.ValidationAt every stage, the survey was discussed with each juris-diction to confirm that features being assessed were rele-vant to the hypotheses, whilst remaining locally cogent.During this process, some questions were omitted dueto lack of international applicability. These included therelevance and use of guidelines which varied betweenjurisdictions, issues of differential care to remote com-munities (relevant to Canada, Australia and Norway),variations in care between publicly and privately insuredpatients, and questions related to screening of asymp-tomatic patients. Each of these factors was seen tohave particular local pertinence, but less internationalrelevance. These were topics taken up by some juris-dictions that asked additional (non-core) questions intheir local survey. Thus, content validity of the aspectswas ensured during the conceptualisation.The face validity of the final items was tested twice.The initial survey was piloted by four English academicPCPs who were asked to complete a paper-basedversion of the survey and give written and verbal feed-back on the relevance of items, whether the items cov-ered the area of interest and whether they would beable to interpret results from the answers. They werealso asked about their understanding of the questions.Amendments were made in the light of their feedbackto develop a second draft.The second draft was tested out on seven EnglishPCPs of varying age, gender and background. Six wereseen face to face and the seventh provided written feedback.The PCPs were asked to complete a prototype electronicversion of the survey in the presence of the researcher, whothen used a cognitive interviewing technique to ascertainthe relevance of the survey and its content, including un-derstanding of the meaning of the questions involved. ThePCPs considered instructions to be appropriate, the contentwas relevant and the vignettes represented clinical casesthat they could recognise from their clinical practice [16].They were clear that the purpose of the vignettes was not a‘test’ of their practice, but to identify how they would man-age a patient’s symptoms. Suggestions were made to clarifythe meaning of some items.Feasibility was tested on both of these occasions with allPCPs reporting that the time to complete the survey wasreasonable; all completed the survey within 20 minutes.ResultsTesting consistencyIn the vignettes the respondents were asked how theywould manage each case, including which investigationsthey would undertake in primary care. Respondents wereasked to choose only tests that they had direct access to(tests that could be ordered by the GP without referenceto a specialist doctor) in their own practice. In the directquestion section, respondents were also asked which testswere available by direct access in their jurisdiction. As ameasure of consistency, we measured how many respon-dents ordered tests in the vignettes that were not availableto them through direct access, according to their responseto the question on this point. This cross-validation exer-cise was performed on the first jurisdiction to completethe survey (Denmark). We identified and assessed the useof those tests where at least 80% of respondents did nothave direct access to the tests: CT/MRI of lung forvignettes one and two, CT abdomen for vignettes three,four and five and colonoscopy for vignettes three and four.The percentages of these Danish respondents who orderedthese tests despite stating no access were low: vignette one= 9%; vignette two = 4.2%; vignette three, CT abdomen =0%, colonoscopy = 0%; vignette four, CT abdomen = 2.9%,colonoscopy = 0%; vignette five, CT abdomen = 5.3%.We did not determine test-retest reliability because wepredicted that answers would differ over time. This wouldRose et al. BMC Family Practice 2014, 15:122 Page 4 of 8http://www.biomedcentral.com/1471-2296/15/122be especially true of the vignettes as respondents were toldthe outcome of each vignette at the end of the survey.Translation and adaptationThe final English version of the survey was adapted inthe other English-speaking countries outside the UK.For the Canadian and Australian jurisdictions, there wasan adaptation of certain specific terms to improve sensein these jurisdictions (such as ‘office’ or ‘clinic’ instead of‘practice’). Together with the collaborators in Canada itwas agreed not to make a translation into CanadianFrench and with collaborators in Wales not to make atranslation in Welsh.The final validated UK English version of the surveywas translated into Danish, Norwegian and Swedish,following methods already described [23]. To take ad-vantage of the commonalities between the Scandinavianlanguages, the survey was first translated into Danish.The translation into Danish followed a standardisedprocess [23]. Translations were done by two native Da-nish speakers who spoke good English (one profession-ally in English medical language and one an Englishcorrespondent). The translation was then checked bytwo Danish PCPs and any problems discussed with thetranslators at an expert meeting. Then there was a back-translation into English made by two English nativespeakers who also spoke Danish fluently. Both were familiarwith medical terminology. The back-translation was com-pared and discussed and semantic differences with the ori-ginal version were discussed at a second expert meeting.We aimed for conceptual and cultural equivalence ratherthan a verbatim translation. Items were culturally adaptedto reflect the Danish healthcare systems. Discussion be-tween the central team and Danish collaborators was thenundertaken to check equivalence of linguistic, cultural andprofessional meaning with the UK English version.The final Danish version was then pilot tested amongfour PCPs before being translated into Swedish and Norwe-gian. These translations were made by a single translationinto Swedish and Norwegian, respectively. These versionswere not back-translated. The final Norwegian and Swedishversions were culturally and structurally adapted. TheSwedish version was also tested on 20 PCPs and registrars.Pilot testing of the final versionThe survey was converted into an electronic version bya commercial company (Sigmer Technologies Limited).The electronic version was then tested by 16 PCPs inthe UK. No issues were identified concerning how theelectronic version of the survey worked. However, thetime taken to complete all five vignettes was consideredto be too long and the central team decided to ask eachrespondent to answer only two vignettes each. These vi-gnettes were assigned randomly, with each referring to adifferent cancer, with either a positive cancer diagnosisfollowed by a negative vignette or vice versa. Respondentsknew this was a cancer related survey, so the choice andoutcome of vignettes was randomized to minimise bias.Sample selectionEach jurisdiction decided on a method of sampling andapproach to potential participants (regular post oremail), dependant on local conditions and the avail-ability of databases with PCP contact details. Partici-pants were PCPs in regular day time primary care,locums or those working in ‘out-of-hours’ services.Retired PCPs and those in training were not eligible,and other primary care providers such as nurse practi-tioners were not included.Sample sizeEach jurisdiction was expected to recruit at least 200respondents. A sample size of 200 has a 95% confidenceinterval (CI) of 43-57% for an equally distributed response(50% respond ‘yes’), and a CI of 15-26% for a responsewhere 20% of respondents say ‘yes’.Analysis planThe answers to direct questions will be presented assimple descriptive statistics. This will enable comparisonbetween jurisdictions of several stages of the processfrom presentation of cancer symptoms to diagnosis inprimary care or referral. This includes length of consul-tations, safety-netting practices (processes to ensure ap-propriate patient follow-up), availability and wait fortests and test results, availability of advice and speed ofreferral to first appointment.The main outcome of interest in the vignettes will bethe proportion of respondents in each jurisdiction who‘completed’ the vignette (i.e. made a referral or undertooka definitive diagnostic test) at each stage compared to theone-year survival and five-year [conditional on one year]survival for that cancer in a given jurisdiction [1,24]. Bothof these survival outcomes are affected by factors in theperiod before referral to hospital. The conditional 5 yearsurvival (i.e. 5 year survival conditional on surviving atleast 1 year) minimises the impact of factors that primarilyaffect survival in the first year after diagnosis, such as de-lays in diagnosis and aggressiveness of the tumour. Re-gression analyses will seek associations between otherfactors investigated in the survey and survival rates.The final surveyCopies of the survey are available upon request fromthe ICBP programme management team at icbp@cancer.org.uk.Rose et al. BMC Family Practice 2014, 15:122 Page 5 of 8http://www.biomedcentral.com/1471-2296/15/122DiscussionThis paper describes the development of a survey to assessthe differences in primary care as it relates to cancer diag-nosis amongst 11 jurisdictions (England, Northern Ireland,Wales, Denmark, Norway, Sweden, British Columbia,Manitoba, Ontario, New South Wales and Victoria) thatmake up part of the ICBP. The purpose of the survey is toidentify and understand differences in primary care systemsand in the clinical practice of PCPs that might explain thedifferences in cancer outcomes between these jurisdictions.The survey was tested extensively before completion, in-cluding checks to ensure cross-cultural validity.Other surveys have used similar methodology, espe-cially relating to the use of vignettes and this methodhas good correlation with clinical practice [18]. Thereare no similar surveys investigating the diagnosis of can-cer across a large number of jurisdictions. The survey isrelevant to clinical practice in countries with a primarycare led health service and contains clinical situationsthat are familiar to PCPs. The electronic nature of thesurvey makes it possible to use vignettes with multipleoptions. It is easily accessible and easy to conduct and itwill provide strong comparative data as a result. Its usewould be restricted in countries with limited internet ac-cess for PCPs.Iterative testing of the survey was undertaken, both inEngland where the survey was developed but also insome other jurisdictions to ensure face validity, contentvalidity and cross cultural validity. Extensive pilotingamong all jurisdictions was limited by the need to de-velop the survey at the same time as jurisdictions werebeing recruited and adapting the survey for local use.More extensive pilot testing was also limited by con-straints of time and resources. Reliability testing wasconsequently difficult in the pilot stage due to smallnumbers of respondents in the pilot stages, but testingof consistency in the early stage of the actual surveyshowed a high level of consistency in the vignettes withthe exception of the use of CT lung scans in the lungcancer vignettes; 9% of respondents ordering a lung CTto investigate the cases had stated that they did not haveaccess to this test. However, even in these vignettesconsistency scores were considered acceptable.Restricting the survey to only two of five possible vi-gnettes might affect validity of results by reducing thesample size for each vignette. However, this was felt ne-cessary to ensure survey completion time was reasonableand to enable exploration of other issues not amenableto the use of vignettes, including structural and organ-isational factors.The survey will have future value in providing a bench-mark against which other studies could be measured and inproviding a ‘template’ that could be adjusted to local circum-stances for similar studies to be undertaken in other settings.ConclusionsWe have developed and validated a survey instrumentthat investigates the diagnosis of cancer by primary carephysicians. We intend to use the instrument to comparecurrent practice between six countries whose health ser-vices are led by primary care. Other countries with simi-lar health systems could use this study as a benchmarkand the survey could be repeated to identify changeswith time. The vignette part of the survey could also beused as an educational tool.We anticipate that the findings from ICBP Module 3will have an impact on healthcare policy and practice inthe participating jurisdictions and begin to indicate pri-mary care factors that could impact on survival differ-ences between participating jurisdictions.Appendix A – Working GroupAndriana Barisic, Research Associate, Department ofPrevention and Cancer Control, Cancer Care Ontario, 620University Avenue, Toronto, Ontario, M5G 2 L7, Canada.Martin Dawes, Head, Department of Family Practice,David Strangway Building, University of British Columbia,5950 University Boulevard, Vancouver, British Columbia,V6T 1Z3, Canada.Diana Dawes, Research Associate, Department of Fam-ily Practice, David Strangway Building, University ofBritish Columbia, 5950 University Boulevard, Vancouver,British Columbia, V6T 1Z3, Canada.Mark Elwood, Vice-President, Family and CommunityOncology, BC Cancer Agency; Clinical Professor, Schoolof Population and Public Health, UBC; Honorary Professor,Department of Epidemiology and Preventive Medicine,Monash University, Melbourne, Australia.Kirsty Forsdike, Senior Research Assistant, Departmentof General Practice, 200 Berkeley Street, Carlton Victoria3053, Australia.Eva Grunfeld, Director, Knowledge Translation ResearchNetwork Health Services Research Program, OntarioInstitute for Cancer Research; Professor and Vice ChairResearch Department of Family and Community Medicine,University of Toronto, 500 University Avenue, Toronto,Ontario, M5G 1 V7, Canada.Nigel Hart, Clinical Senior Lecturer, School of Medicine,Dentistry and Biomedical Sciences - Centre for PublicHealth, Queen’s University Belfast 2013, University RoadBelfast, BT7 1NN, United Kingdom.Breann Hawryluk, Project Planning Coordinator, Depart-ment of Patient Navigation, Cancer Care Manitoba, 675McDermot Street, Winnipeg, Manitoba, Canada.Gerald Konrad, Associate Professor, Department ofFamily Medicine, University of Manitoba 5–400 TacheAvenue, Winnipeg, Manitoba, Canada.Anne Kari Knudsen, Administrative leader, Depart-ment of Cancer Research and Molecular Medicine,Rose et al. BMC Family Practice 2014, 15:122 Page 6 of 8http://www.biomedcentral.com/1471-2296/15/122Norwegian University of Science and Technology,7489 Trondheim.Magdalena Lagerlund, Department of Learning, In-formatics, Management and Ethics, Karolinska Institute,Berzelius väg 3, Stockholm 171 77, Sweden.Claire McAulay, Research Officer, Public Health, Schoolof Public Health, D02-QE11 Research Institute for Mothersand Infants, University of Sydney NSW 2006 Australia.Jin Mou, Postdoctoral Fellow, Department of FamilyPractice, Research Office, Department of Family Practice,David Strangway Building, University of British Columbia,5950 University Boulevard, Vancouver, British Columbia,V6T 1Z3, Canada.Richard D Neal, Professor of Primary Care Medicineand Director, North Wales Centre for Primary Care Re-search, Bangor University, Gwenfro Units 4–8, WrexhamTechnology Park, Wrexham, LL13 7YP, United Kingdom.Marie Pirotta, Primary Health Care Research Evaluationand Development Senior Research Fellow, Department ofGeneral Practice, 200 Berkeley Street, Carlton Victoria3053, Australia.Jeffrey Sisler, Associate Dean, Division of ContinuingProfessional Development; Professor, Department of FamilyMedicine, University of Manitoba, 727 McDermot Avenue,Winnipeg, Manitoba, R3E 3P5, Canada.Berit Skjødeberg Toftegaard, PhD Research Fellow,Research Unit for General Practice, Department ofPublic Health, Aarhus University, Bartholins Allé 2,8000 Aarhus C, Denmark.Associate Professor Hans Thulesius, Associate Professorat Lund University, Box 117, SE-221 00 Lund, Sweden.Professor Peter Vedsted, Professor at Research Unitfor General Practice, Department of Public Health, AarhusUniversity, Bartholins Allé 2, 8000 Aarhus C, Denmark.David Weller, James Mackenzie Professor of GeneralPractice, Centre for Population Health Sciences, Universityof Edinburgh, Doorway 1, Medical Quad Teviot Place,Edinburgh, EH8 9DX, United Kingdom.Jane Young, Professor in Cancer Epidemiology, PublicHealth, School of Public Health, D02-QE11 ResearchInstitute for Mothers and Infants, The University ofSydney, 2006, Australia.AbbreviationsICBP: International Cancer Benchmarking Partnership; PCP: Primary carepractitioner.Competing interestsWH is the clinical lead for the ongoing revision of the NICE 2005 guidanceon referral for suspected cancer, CG27. His contribution to this article is in apersonal capacity, and is not to be interpreted as representing the view ofthe Guideline Development Group, or of NICE itself. The other authorsdeclare that they have no competing interests.Authors’ contributionsThe initial development of the survey in England was undertaken by PWR,WH, CG with support from CF. KA undertook the validation in England. Allauthors contributed to the development of the initial survey into aninternational instrument. PWR wrote the original manuscript withsubsequent contributions from all authors. PWR, WH, KA, AB, MD, CF, EG, NH,RDN, MP, JS, HT, PV, JY and GR were responsible for ensuring the languageand terminology of the survey was relevant to their health economy. PWR,WH, KA, AB, MD, CF, EG, NH, RDN, MP, JS, HT, PV, JY and GR contributed to,reviewed and approved the final manuscript. PV, HT, SSA were responsiblefor translation into the Scandinavian languages and validation in thesecountries.AcknowledgementsKate Aldersey, Martine Bomb, Catherine Foot, Brad Groves and SamanthaHarrison of Cancer Research UK for managing the programme. JohnArchibald of Sigmer Technologies for coordinating the online surveys.MacMillan Cancer Support Charity (UK) whose GP colleagues helped to testand pilot the survey in England.Programme BoardOle Andersen (Danish Health and Medicines Authority, Copenhagen,Denmark), Søren Brostrøm (Danish Health and Medicines Authority,Copenhagen, Denmark), Heather Bryant (Canadian Partnership AgainstCancer, Toronto, Canada), David Currow (Cancer Institute New South Wales,Sydney, Australia), Dhali Dhaliwal (Cancer Care Manitoba, Winnipeg, Canada),Anna Gavin (Northern Ireland Cancer Registry, Queens University, Belfast, UK),Gunilla Gunnarsson (Swedish Association of Local Authorities and Regions,Stockholm, Sweden), Jane Hanson (Welsh Cancer National Specialist AdvisoryGroup, Cardiff, UK), Todd Harper (Cancer Council Victoria, Carlton, Australia),Stein Kaasa (University Hospital of Trondheim, Trondheim, Norway), NicolaQuin (Cancer Council Victoria, Carlton, Australia), Linda Rabeneck (CancerCare Ontario, Toronto, Canada), Michael A Richards (Care QualityCommission, London, UK), Michael Sherar (Cancer Care Ontario, Toronto,Canada), Robert Thomas (Department of Health Victoria, Melbourne,Australia).Academic Reference GroupProfessor Jon Emery, Professor of Primary Care Cancer Research, University ofMelbourne and Clinical Professor of General Practice, University of WesternAustralia, Australia.Professor Niek de Wit, Professor of General Practice, Julius Centre for HealthSciences and Primary Care, University Medical Centre, Utrecht, Netherlands.Professor Roger Jones, Editor, British Journal of General Practice and EmeritusProfessor of General Practice, King’s College, London, United Kingdom.Professor Jean Muris, Associate Professor in Family Medicine, MaastrichtUniversity, Netherlands.Professor Frede Olesen, Research Unit for General Practice, Department ofPublic Health, University of Aarhus, Denmark.FundingCanadian Partnership Against Cancer; Cancer Care Manitoba; Cancer CareOntario; Cancer Council Victoria; Cancer Institute New South Wales; DanishHealth and Medicines Authority; Danish Cancer Society; Department ofHealth, England; Department of Health, Victoria; Northern Ireland CancerRegistry; Norwegian Directorate of Health; South Wales Cancer Network;Swedish Association for Local Authorities and Regions; Tenovus; BritishColumbia Cancer Agency; and the Welsh Government.Author details1Department of Primary Care Health Sciences, New Radcliffe House, 2ndFloor, Radcliffe Observatory Quarter, University of Oxford, Woodstock Road,Oxford OX2 6GG, UK. 2University of Exeter Medical School, College House, StLuke’s Campus, Magdalen Road, Exeter EX1 2LU, UK. 3ICBP Programme,Cancer Research UK, Angel Building, 407 St John Street, London EC1V 4AD,UK. 4Department of Prevention and Cancer Control, Cancer Care Ontario, 620University Avenue, Toronto, ON M5G 2L7, Canada. 5Department of FamilyPractice, David Strangway Building, University of British Columbia, 5950University Boulevard, Vancouver, BC V6T 1Z3, Canada. 6The King’s Fund,11–13 Cavendish Square, London W1G 0AN, UK. 7Knowledge TranslationResearch Network Health Services Research Program, Ontario Institute forCancer Research, Toronto, ON, Canada. 8Department of Family andCommunity Medicine, University of Toronto, 500 University Avenue, Toronto,ON M5G 1V7, Canada. 9School of Medicine, Dentistry and BiomedicalSciences - Centre for Public Health, Queen’s University Belfast 2013, UniversityRose et al. BMC Family Practice 2014, 15:122 Page 7 of 8http://www.biomedcentral.com/1471-2296/15/122Road, Belfast BT7 1NN, UK. 10Primary Care Medicine, North Wales Centre forPrimary Care Research, Bangor University, Gwenfro Units 4-8, WrexhamTechnology Park, Wrexham LL13 7YP, UK. 11Primary Health Care ResearchEvaluation and Development, Department of General Practice, 200 BerkeleyStreet, Carlton, Victoria 3053, Australia. 12Division of Continuing ProfessionalDevelopment, Department of Family Medicine, University of Manitoba, 727McDermot Avenue, Winnipeg, Manitoba R3E 3P5, Canada. 13Lund University,Box 117, SE-221 00 Lund, Sweden. 14Research Unit for General Practice,Department of Public Health, Aarhus University, Bartholins Allé 2, 8000Aarhus C, Denmark. 15Cancer Epidemiology, Public Health, School of PublicHealth, D02-QE11 Research Institute for Mothers and Infants, The Universityof Sydney, Sydney 2006, Australia. 16Wolfson Research Institute, Queen’sCampus, Durham University, Stockton on Tees TS17 6BH, UK.Received: 28 January 2014 Accepted: 28 May 2014Published: 17 June 2014References1. 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BMJ 2009, 339:b2998. doi:10.1136/bmj.b2998.22. Jones R, Charlton J, Latinovic R, Gulliford MC: Alarm symptoms andidentification of non-cancer diagnoses in primary care: cohort study.BMJ 2009, 339:b3094. doi:10.1136/bmj.b3094.23. Guillemin F, Bombardier C, Beaton D: Cross-cultural adaptation ofhealth-related quality of life measures: literature review andproposed guidelines. J Clin Epidemiol 1993, 46(12):1417–1432.24. Dickman P, Adami H-O: Interpreting trends in cancer patient survival.J Intern Med 2006, 260:103–117.doi:10.1186/1471-2296-15-122Cite this article as: Rose et al.: Development of a survey instrument toinvestigate the primary care factors related to differences in cancerdiagnosis between international jurisdictions. BMC Family Practice2014 15:122.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitRose et al. BMC Family Practice 2014, 15:122 Page 8 of 8http://www.biomedcentral.com/1471-2296/15/122


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