Experiences of colorectal cancer survivors in returning to primary coordinated healthcare following treatment
Claudia Rutherford A B * , Bora Kim A C , Kate White A B D , Cheri Ostroff E F , Louise Acret A B , Marguerite Tracy G , Janani Mahadeva H and Simon M. Willcock HA Cancer Care Research Unit, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
B The Daffodil Centre, The University of Sydney, a joint venture with Cancer Council NSW, Sydney, NSW, Australia.
C Nursing & Midwifery and Health Sciences, Faculty of Medicine, Notre Dame University, Sydney, NSW, Australia.
D Sydney Local Health District, Sydney, NSW, Australia.
E Consumer Representative, Adelaide, SA, Australia.
F University of South Australia, Centre for Workplace Excellence, Adelaide, SA, Australia.
G Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
H MQ Health General Practice, Macquarie University, Sydney, NSW, Australia.
Australian Journal of Primary Health 29(5) 463-470 https://doi.org/10.1071/PY22201
Submitted: 13 September 2022 Accepted: 6 February 2023 Published: 6 March 2023
© 2023 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of La Trobe University. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)
Abstract
Background: Advances in screening and treatments for colorectal cancer (CRC) have improved survival rates, leading to a large population of CRC survivors. Treatment for CRC can cause long-term side-effects and functioning impairments. General practitioners (GPs) have a role in meeting survivorship care needs of this group of survivors. We explored CRC survivors’ experiences of managing the consequences of treatment in the community and their perspective on the GP’s role in post-treatment care.
Methods: This was a qualitative study using an interpretive descriptive approach. Adult participants no longer actively receiving treatment for CRC were asked about: side-effects post-treatment; experiences of GP-coordinated care; perceived care gaps; and perceived GP role in post-treatment care. Thematic analysis was used for data analysis.
Results: A total of 19 interviews were conducted. Participants experienced side-effects that significantly impacted their lives; many they felt ill-prepared for. Disappointment and frustration was expressed with the healthcare system when expectations about preparation for post-treatment effects were not met. The GP was considered vital in survivorship care. Participants’ unmet needs led to self-management, self-directed information seeking and sourcing referral options, leaving them feeling like their own care coordinator. Disparities in post-treatment care between metropolitan and rural participants were observed.
Conclusion: There is a need for improved discharge preparation and information for GPs, and earlier recognition of concerns following CRC treatment to ensure timely management and access to services in the community, supported by system-level initiatives and appropriate interventions.
Keywords: colorectal cancer, consumer participation, continuity of patient care, health transition, patient experiences, primary care, primary health care, qualitative study, survivorship care.
References
Arndt V, Merx H, Stegmaier C, Ziegler H, Brenner H (2004) Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general population: a population-based study. Journal of Clinical Oncology 22, 4829–4836.| Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general population: a population-based study.Crossref | GoogleScholarGoogle Scholar |
Australian Insitute of Health and Welfare (2012) Cancer incidence projections: Australia, 2011 to 2020. Australian Institute of Health and Welfare, Canberra.
Bowel Cancer Australia (2020) Young-onset bowel cancer. Available at https://www.bowelcanceraustralia.org/young-onset
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.
| Using thematic analysis in psychology.Crossref | GoogleScholarGoogle Scholar |
Calman L, Turner J, Fenlon D, Permyakova NV, Wheelwright S, Patel M, Din A, Winter J, Richardson A, Smith PWF, Foster C, motCSA Committee (2021) Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study. Colorectal Disease 23, 3234–3250.
| Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study.Crossref | GoogleScholarGoogle Scholar |
Cancer Council Victoria (2018) Australians living with and beyond cancer in 2040. Available at https://www.cancervic.org.au/research/registry-statistics/statistics-data/cancer-prevalence-in-2040.html [Accessed 28 May 2020]
Cancer Council Victoria and Department of Health Victoria (2021) ‘Optimal care pathway for people with colorectal cancer.’ (Cancer Council Victoria)
Durcinoska I, Young JM, Solomon MJ (2017) Patterns and predictors of colorectal cancer care coordination: a population-based survey of Australian patients. Cancer 123, 319–326.
| Patterns and predictors of colorectal cancer care coordination: a population-based survey of Australian patients.Crossref | GoogleScholarGoogle Scholar |
Foster C, Wright D, Hill H, Hopkinson J, Roffe L (2009) Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence. European Journal of Cancer Care 18, 223–247.
| Psychosocial implications of living 5 years or more following a cancer diagnosis: a systematic review of the research evidence.Crossref | GoogleScholarGoogle Scholar |
Halcomb EJ, Davidson PM (2006) Is verbatim transcription of interview data always necessary? Applied Nursing Research 19, 38–42.
| Is verbatim transcription of interview data always necessary?Crossref | GoogleScholarGoogle Scholar |
Hewitt M, Greenfield S, Stovall E (Eds) (2006) ‘From cancer patient to cancer survivor: lost in transition.’ (National Academies Press: Washington)
Hunt MR (2009) Strengths and challenges in the use of interpretive description: reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research 19, 1284–1292.
| Strengths and challenges in the use of interpretive description: reflections arising from a study of the moral experience of health professionals in humanitarian work.Crossref | GoogleScholarGoogle Scholar |
Ireland MJ, March S, Crawford-Williams F, Cassimatis M, Aitken JF, Hyde MK, Chambers SK, Sun J, Dunn J (2017) A systematic review of geographical differences in management and outcomes for colorectal cancer in Australia. BMC Cancer 17, 95
| A systematic review of geographical differences in management and outcomes for colorectal cancer in Australia.Crossref | GoogleScholarGoogle Scholar |
Jefford M, Koczwara B, Emery J, Thornton-Benko E, Vardy JL (2020) The important role of general practice in the care of cancer survivors. Australian Journal for General Practitioners 49, 289–292.
| The important role of general practice in the care of cancer survivors.Crossref | GoogleScholarGoogle Scholar |
Ju A, White K, Wiltink L, Faiz N, Koh C, Candelaria D, Rutherford C (2021) Prevalence of long-term patient-reported consequences of treatment for colorectal cancer: a systematic review. Iranian Journal of Colorectal Research 9, 125–143.
Luo Q, Lew J-B, Steinberg J, Worthington J, Yu XQ, Caruana M, Soerjomataram I, Bray F, Lawrance S, Arcorace M, O’Connell DL, Canfell K, Feletto E (2022) Trends in colon and rectal cancer mortality in Australia from 1972 to 2015 and associated projections to 2040. Scientific Reports 12, 3994
| Trends in colon and rectal cancer mortality in Australia from 1972 to 2015 and associated projections to 2040.Crossref | GoogleScholarGoogle Scholar |
National Cancer Control Indicators (2019) Relative survival by stage at diagnosis (colorectal cancer). Available at https://ncci.canceraustralia.gov.au/outcomes/relative-survival-rate/relative-survival-stage-diagnosis-colorectal-cancer [Accessed 17 May 2022]
National Cancer Control Indicators (2020) 5-year relative survival. Available at https://ncci.canceraustralia.gov.au/outcomes/relative-survival-rate/5-year-relative-survival
Nugteren IC, Duineveld LAM, Wieldraaijer T, van Weert HCPM, Verdonck-de Leeuw IM, van Uden-Kraan CF, Wind J (2017) Need for general practitioner involvement and eHealth in colon cancer survivorship care: patients’ perspectives. Family Practice 34, 473–478.
| Need for general practitioner involvement and eHealth in colon cancer survivorship care: patients’ perspectives.Crossref | GoogleScholarGoogle Scholar |
Rubin G, Berendsen A, Crawford SM, Dommett R, Earle C, Emery J, Fahey T, Grassi L, Grunfeld E, Gupta S, Hamilton W, Hiom S, Hunter D, Lyratzopoulos G, Macleod U, Mason R, Mitchell G, Neal RD, Peake M, Roland M, Seifert B, Sisler J, Sussman J, Taplin S, Vedsted P, Voruganti T, Walter F, Wardle J, Watson E, Weller D, Wender R, Whelan J, Whitlock J, Wilkinson C, de Wit N, Zimmermann C (2015) The expanding role of primary care in cancer control. The Lancet Oncology 16, 1231–1272.
| The expanding role of primary care in cancer control.Crossref | GoogleScholarGoogle Scholar |
Rutherford C, Muller F, Faiz N, King MT, White K (2020) Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: meta-synthesis of qualitative studies. Journal of Patient-Reported Outcomes 4, 27
| Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: meta-synthesis of qualitative studies.Crossref | GoogleScholarGoogle Scholar |
Siegel RL, Miller KD, Fedewa SA, Ahnen DJ, Meester RGS, Barzi A, Jemal A (2017) Colorectal cancer statistics, 2017. CA: A Cancer Journal for Clinicians 67, 177–193.
| Colorectal cancer statistics, 2017.Crossref | GoogleScholarGoogle Scholar |
Valeikaite-Tauginiene G, Kraujelyte A, Poskus E, Jotautas V, Saladzinskas Z, Tamelis A, Lizdenis P, Dulskas A, Samalavicius NE, Strupas K, Poškus T (2022) Predictors of quality of life six years after curative colorectal cancer surgery: results of the prospective multicenter study. Medicina 482
| Predictors of quality of life six years after curative colorectal cancer surgery: results of the prospective multicenter study.Crossref | GoogleScholarGoogle Scholar |
Vu JV-T, Matusko N, Hendren S, Regenbogen SE, Hardiman KM (2019) Patient-reported unmet needs in colorectal cancer survivors after treatment for curative intent. Diseases of the Colon & Rectum 62, 815–822.
| Patient-reported unmet needs in colorectal cancer survivors after treatment for curative intent.Crossref | GoogleScholarGoogle Scholar |
Wiltink LM, White K, King MT, Rutherford C (2020) Systematic review of clinical practice guidelines for colorectal and anal cancer: the extent of recommendations for managing long-term symptoms and functional impairments. Supportive Care in Cancer 28, 2523–2532.
| Systematic review of clinical practice guidelines for colorectal and anal cancer: the extent of recommendations for managing long-term symptoms and functional impairments.Crossref | GoogleScholarGoogle Scholar |
