The long haul: Lived experiences of survivors following different treatments for advanced colorectal cancer: A qualitative study

Chloe Yi Shing Lim; Rebekah C Laidsaar-Powell; Jane M Young; Michael Solomon; Daniel Steffens; David Yeo; Prunella Blinman; Bogda Koczwara; Grace Joshy; advanced-CRC survivorship authorship group; Phyllis Butow

doi:10.1016/j.ejon.2022.102123

The long haul: Lived experiences of survivors following different treatments for advanced colorectal cancer: A qualitative study

Eur J Oncol Nurs. 2022 Jun:58:102123. doi: 10.1016/j.ejon.2022.102123. Epub 2022 Mar 18.

Affiliations

¹ Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia. Electronic address: chloe.lim@sydney.edu.au.
² Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia. Electronic address: rebekah.laidsaar-powell@sydney.edu.au.
³ Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia; The Daffodil Centre, The University of Sydney, a Joint Venture with Cancer Council NSW, Australia. Electronic address: jane.young@sydney.edu.au.
⁴ RPA Institute of Academic Surgery (IAS), Royal Prince Alfred Hospital and University of Sydney, Sydney, NSW, Australia; Surgical Outcomes Research Centre (SOuRCe), Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia; Faculty of Medicine and Health, Central Clinical School, The University of Sydney, Sydney, NSW, Australia; Department of Colorectal Surgery, Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia. Electronic address: professor.solomon@sydney.edu.au.
⁵ Surgical Outcomes Research Centre (SOuRCe), Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia; Faculty of Medicine and Health, Central Clinical School, The University of Sydney, Sydney, NSW, Australia. Electronic address: daniel.steffens@health.nsw.gov.au.
⁶ RPA Institute of Academic Surgery (IAS), Royal Prince Alfred Hospital and University of Sydney, Sydney, NSW, Australia; Surgical Outcomes Research Centre (SOuRCe), Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia; Department of Colorectal Surgery, Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia. Electronic address: davidandrewyeo@gmail.com.
⁷ Concord Cancer Centre, Concord Repatriation General Hospital, Sydney Local Health District, Sydney, NSW, Australia. Electronic address: prunella.blinman@health.nsw.gov.au.
⁸ Department of Medical Oncology, Flinders Medical Center, South Australia, Australia; National Breast Cancer Foundation, Sydney, NSW, Australia. Electronic address: bogda.koczwara@flinders.edu.au.
⁹ National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT, Australia. Electronic address: grace.joshy@anu.edu.au.
¹⁰ Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia. Electronic address: phyllis.butow@sydney.edu.au.

PMID: 35429695
DOI: 10.1016/j.ejon.2022.102123

Abstract

Purpose: Modern treatments, including surgery and palliative chemotherapy without surgery, enable longer survival for people with advanced/recurrent colorectal cancer (CRC). Qualitative research comparing the physical and psychosocial outcomes of these different treatments is lacking. This study therefore aimed to explore and compare the physical and psychosocial challenges and survivorship experiences of people who receive different treatments for advanced CRC, through a qualitative study.

Method: Adults with CRC who have undergone treatment for advanced/recurrent CRC were recruited 0.5-2 years post-surgery or, for palliative chemotherapy participants, 0.5-2 years post-diagnosis of advanced CRC. Qualitative semi-structured telephone interviews, analysed via framework analysis, explored quality of life (QoL) experiences. Demographic, clinical, and QoL data (Functional Assessment of Cancer Therapy - Colorectal (FACT-C), Distress Thermometer) were collected to characterise the sample and inform the framework analysis.

Results: A diverse sample of 38 participants (22 female) participated, with ages ranging 27-84 (Median = 59), FACT-C 56-132 (Median = 102), and distress 0-10 (median = 3). Analysis of interviews revealed three overarching themes: 1) the overwhelming impact of protracted, complex illness; 2) compounding and interacting effects of multiple treatments, impacts, and multimorbidity; and 3) the long haul is unpredictable, bumpy, and wearing. These themes reveal that people with advanced CRC experience many challenges due to the complex nature of the illness, its treatment, and side effects.

Conclusions: Survivors require continued multi-disciplinary supportive care throughout follow-up to manage survivorship challenges. Guideline-led survivorship care and routine monitoring of physical and psychosocial wellbeing throughout follow up is imperative to manage patient expectations and support advanced CRC survivors.

Keywords: Advanced cancer; Colorectal cancer; Patient Experiences; Physical impacts; Psychosocial impacts; Qualitative; Quality of life; Survivorship.

MeSH terms

Adult
Chronic Disease
Colorectal Neoplasms* / psychology
Female
Humans
Neoplasm Recurrence, Local
Qualitative Research
Quality of Life* / psychology
Survivors / psychology