Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 May 19;11(5):e043245.
doi: 10.1136/bmjopen-2020-043245.

'Because Everybody is so Different': a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

Catherine H Saunders  1 , Jenaya L Goldwag  2 , Jackson T Read  3 , Marie-Anne Durand  4 , Glyn Elwyn  5 , Srinivas J Ivatury  6   3
Affiliations

'Because Everybody is so Different': a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

Catherine H Saunders et al. BMJ Open. .

Abstract

Objective: To (1) characterise (A) the lived experiences and (B) information needs of patients with rectal cancer; and (2) compare to the perceived lived experiences and information needs of colorectal surgeons.

Design: We conducted 1-hour semistructured qualitative interviews, dual independent transcript coding and thematic analysis.

Setting/participants: Interviews included rectal cancer survivors (stages I-III), some accompanied by caregivers, at Dartmouth-Hitchcock Medical Center and experienced colorectal surgeons.

Results: We performed 25 interviews involving 30 participants, including 15 patients with 5 caregivers, plus 10 physicians. Two major themes emerged. First, patients reported major impacts on their lives following rectal cancer, including on their everyday lives and leisure activities; identity, self-confidence and intimacy; mental health, especially anxiety. These impacts were mediated by their medical experiences, lifestyle and attitudes. Second, the diversity of effects on patients' lives means that care, counselling and information needs should be personalised for a better medical experience and outcomes. Surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas, particularly concerning intimacy and mental health.

Conclusion: Rectal cancer diagnosis, treatment and survivorship dramatically affect all people, regardless of which surgical treatment they undergo. Effects are varied and necessitate customised care, counselling and information, which surgeons are not currently providing. Because rectal cancer affects every part of patients' lives, they need holistic support and information. Patients would benefit from substantial support after treatment as they establish a new normal.

Keywords: colorectal surgery; oncology; qualitative research.

PubMed Disclaimer

Conflict of interest statement

Competing interests: CHS reports holding copyright in the consideRATE suite, including the consideRATE talk guide and the consideRATE questions, tools to support care of seriously ill people. MAD reports fees from EBSCO Health and ACCESS Community Health Network and reports holding copyright in consideRATE. GE reports royalties from Oxford University Press and Radcliffe Press, ownership of &THINK, SharpNetwork, and fees from ACCESS Community Health Network, Chicago Federally Qualified Medical Centers, EBSCO Health, Bind Insurance, PatientWisdom and Abridge AI. He also reports holding copyright in collaboRATE, integRATE and consideRATE.

Figures

Figure 1
Figure 1
Major emergent themes.
See this image and copyright information in PMC

References

    1. Key statistics for colorectal cancer. Available: https://www.cancer.org/cancer/colon-rectal-cancer/about/key-statistics.html [Accessed 23 Nov 2019].
    1. Bleday R. Rectal cancer: surgical techniques (Weiser M, Chen W eds), 2019. Available: https://www.uptodate.com/contents/rectal-cancer-surgical-techniques?sear...
    1. Rubin F, Douard R, Wind P. The functional outcomes of coloanal and low colorectal anastomoses with reservoirs after low rectal cancer resections. Am Surg 2014;80:1222–9. 10.1177/000313481408001224 - DOI - PubMed
    1. Campelo P, Barbosa E. Functional outcome and quality of life following treatment for rectal cancer. Journal of Coloproctology 2016;36:251–61. 10.1016/j.jcol.2016.05.001 - DOI
    1. Pachler J, Wille-Jørgensen P. Quality of life after rectal resection for cancer, with or without permanent colostomy. Cochrane Database Syst Rev 2012;12:CD004323. 10.1002/14651858.CD004323.pub4 - DOI - PMC - PubMed

Publication types

LinkOut - more resources