Abstract
Purpose
To explore experiences and support needs of people with colorectal cancer, with a focus on identifying opportunities for primary care interventions.
Methods
We conducted a new qualitative analysis of an existing dataset, comprising semi-structured interview transcripts from 39 people with colorectal cancer from across the UK, interviewed in 2001–2002 for www.healthtalkonline.org. Then, we conducted semi-structured interviews with 30 people with colorectal cancer from North East Scotland and Glasgow in 2009 and analysed these new data to explore themes and challenge hypotheses that emerged from the Healthtalkonline data.
Results
Formal sources of support, including that from primary care, were valued by those who received them, but provision was described as sporadic both in 2002 and in 2009. However, more of the 2009 participants gave descriptions of specialist nurse and community nurse involvement, and telephone contact from general practitioners, which were welcomed. Improvements in meeting information needs, particularly on the issues of diet and sex, were identified by 2009. A recurring issue reported by patients was the distress experienced by their own friends and family; some patients found themselves having to provide, rather than receive, emotional support at this difficult time.
Conclusions
There have been improvements in support for people with colorectal cancer since 2002, with more specialist and community nurse involvement, and telephone contact from general practitioners, but provision remains piecemeal. Patients would benefit if their families received support, and primary care may be in a good position to provide this. A proactive approach from general practitioners in the post-discharge period is valued.
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Acknowledgements
The authors acknowledge the contribution of the Health Experience Research Group at Oxford University and especially Linda Rozmovits who collected the original data for the Healthtalkonline Colorectal Cancer study. To all the recent participants, in both interview groups, who gave their time willingly, often with the express desire to “help someone else in the future”, thank you.
Funding
This work was supported by Cancer Research UK, programme grant number C542/A6502.
Ethics committee
Ethical approval for this study was granted by MREC reference no: 06/MRE00/3, and it was conducted in accordance with the ethical standards laid out in the 1964 Declaration of Helsinki.
Competing interests
Disclosures: none. The authors declare that they have no competing interests. In particular, they have no financial interest with Cancer Research UK other than research project funding. They have full control of all primary data and, subject to research ethics committee approval, agree to allow the journal to review anonymous data if requested.
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Appendix
Appendix
The original analysis of Healthtalkonline data detailed the physical, psychological and social distress that patients experience from difficulties with bowel control [16]. A more recent study explored relationships between patients and spouses or cohabiting partners, highlighting their mutual support and reciprocity, along with some “traditional” gender differences [18]. Of most relevance to our aims was a study that combined a survey of follow-up regimes in 50 hospitals with an exploration of patients’ needs and preferences for follow up [17]. This paper reported wide variation in patients’ preferences, often depending on symptoms, and positive and negative experiences of their general practitioners. It suggested that general practitioners could have a greater role in follow up for some patients and provided a checklist of topics they may wish to learn about and discuss with patients.
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Hall, S., Gray, N., Browne, S. et al. A qualitative exploration of the role of primary care in supporting colorectal cancer patients. Support Care Cancer 20, 3071–3078 (2012). https://doi.org/10.1007/s00520-012-1434-7
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DOI: https://doi.org/10.1007/s00520-012-1434-7