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.
We wish to thank Professor Mike Richards (then National Cancer Director) and Professor Chris Ham (Chief Executive King’s Fund) who had the original idea for the study as well as facilitated bringing the three research teams together. We are extremely grateful to the people who took part in this research in all three countries, and to the study advisory panel, including patient and public representatives, who helped design the study and provided comments on an earlier draft of this manuscript. We also acknowledge the support of the National Institute for Health Research, through the Clinical Research Network, who helped recruit patients into the English arm of the study. We would also like to thank all those who helped to recruit participants: In England, we would like to thank the NHS Hospital Trusts that assisted with this study and Patients Active in Research; Thames Valley, along with the following charities who posted links or circulated our details on social media; Beating Bowel Cancer, Bowel Cancer UK, Roy Castle Lung Cancer Foundation, British Lung Foundation and healthtalk.org. In Denmark, we want to thank the Lung Cancer Patient organisation, as well as the Colon Cancer Patient organisation for assisting us in recruiting patients. We also wish to thank the local support groups of the National Danish Cancer Society, as well as the local oncology departments in various regions of Denmark. In Sweden, we would like to thank the nurses and physicians who helped with recruitment.
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.