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Abstract
Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms.
Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer.
Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview.
Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes.
Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden.
Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.
- primary care
- qualitative research
- international health services
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Footnotes
Contributors SZ developed the idea for the manuscript. JM wrote the first draft, with edits made by SZ, JE, MM, CT, RSA and PV. BMB, AC, LE, SH, LL, TON, AC and BR contributed to the analysis meetings and provided comments on drafts.
Funding This paper presents independent research funded by organisations from three European countries as follows: In the UK, the study was supported by the National Awareness and Early Diagnosis Initiative (NAEDI). The contributing partners include: Cancer Research UK; Department of Health, England; Economic and Social Research Council; Health and Social Care Research and Development Division, Public Health Agency, Northern Ireland; National Institute for Social Care and Health Research, Wales and the Scottish Government. This funding also covered the costs associated with the comparative analysis meetings in Denmark and Sweden and funded translation of the Danish and Swedish material for publications. During the study LL was Director of Applied Research at the Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, and was supported by the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre and the NIHR Collaboration for Leadership in Applied Health Research and Care Oxford (CLAHRC) at Oxford Health NHS Foundation Trust. In Denmark, the study was supported by the Research Centre for Cancer Diagnosis in Primary Care funded by The Danish Cancer Society and the Novo Nordic Foundation. In Sweden, the study was supported by the Vårdal Foundation; the Strategic Research Program in Care Sciences (SFO-V), Umeå University; the Cancer Research Foundation in Northern Sweden and from government funding of clinical research within the National Health Service, Sweden.
Disclaimer The views expressed in this paper are those of the authors and not necessarily those of the NAEDI, Danish and Swedish funding partners.
Competing interests None declared.
Patient consent Obtained.
Ethics approval Approvals for research ethics and governance were obtained separately according to the requirements in each country as follows: England: Research Ethics Service reference 14/NS/1035 Denmark: The Biomedical Research Ethics Committee System Act does not apply to this project, as the project does not implicate the use of human biological materials. Standard ethical protocol according to the American Anthropological Association was followed. Sweden: Regional Ethics Board, Lund, Sweden, reg. no 2014/819.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement In Denmark the data are available for secondary analysis in conjunction with members of the research group named Comparative Cancer Experiences. In England the participants gave informed consent for data to be copyrighted to the University of Oxford for secondary analysis, broadcasting, publication and teaching. In Sweden the data are available for secondary analysis in conjunction with members of the research group named Comparative Cancer Experiences.