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Patients’ initial steps to cancer diagnosis in Denmark, England and Sweden : what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

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MacArtney, John I., Malmström, Marlene, Overgaard Nielsen, Trine, Evans, Julie, Bernhardson, Britt-Marie, Hajdarevic, Senada, Chapple, Alison, Eriksson, Lars E., Locock, Louise, Rasmussen, Birgit, Vedsted, Peter, Tishelman, Carol, Andersen, Rikke Sand and Ziebland, Sue (2017) Patients’ initial steps to cancer diagnosis in Denmark, England and Sweden : what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors? BMJ Open, 7 (11). e018210. doi:10.1136/bmjopen-2017-018210

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Official URL: http://dx.doi.org/10.1136/bmjopen-2017-018210

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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.

Item Type: Journal Article
Subjects: R Medicine > RC Internal medicine
Divisions: Faculty of Medicine > Warwick Medical School > Health Sciences
Faculty of Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH)
Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH): Cancer -- Diagnosis -- Sweden, Cancer -- Diagnosis -- Denmark, Cancer -- Diagnosis -- Great Britain, Cancer -- Patients -- Interviews -- Case studies
Journal or Publication Title: BMJ Open
Publisher: BMJ
ISSN: 2044-6055
Official Date: 19 November 2017
Dates:
DateEvent
19 November 2017Available
13 September 2017Accepted
Volume: 7
Number: 11
Article Number: e018210
DOI: 10.1136/bmjopen-2017-018210
Status: Peer Reviewed
Publication Status: Published
Access rights to Published version: Restricted or Subscription Access
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
UNSPECIFIEDCancer Research UKhttp://dx.doi.org/10.13039/501100000289
UNSPECIFIEDGreat Britain. Department of Health (DoH)UNSPECIFIED
UNSPECIFIEDEconomic and Social Research Councilhttp://dx.doi.org/10.13039/501100000269
UNSPECIFIEDPublic Health Agencyhttp://dx.doi.org/10.13039/501100001626
UNSPECIFIEDNational Institute for Social Care and Health Researchhttp://dx.doi.org/10.13039/100009250
UNSPECIFIEDNational Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272
UNSPECIFIEDKræftens Bekæmpelsehttp://dx.doi.org/10.13039/100008363
UNSPECIFIEDNovo Nordiskhttp://dx.doi.org/10.13039/501100004191
UNSPECIFIEDVårdalstiftelsenhttp://dx.doi.org/10.13039/100009107
UNSPECIFIEDUmeå Universitethttp://dx.doi.org/10.13039/501100004885
UNSPECIFIEDCancerfondenhttp://dx.doi.org/10.13039/501100002794
UNSPECIFIEDSocialdepartementethttp://dx.doi.org/10.13039/501100005348

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