Healthcare experiences of people with advanced colorectal cancer: A qualitative study

Chloe Yi Shing Lim; Rebekah C Laidsaar-Powell; Jane M Young; Daniel Steffens; Nabila Ansari; Grace Joshy; Phyllis Butow; advanced-CRC survivorship authorship group

doi:10.1016/j.ejon.2022.102265

Healthcare experiences of people with advanced colorectal cancer: A qualitative study

Eur J Oncol Nurs. 2023 Apr:63:102265. doi: 10.1016/j.ejon.2022.102265. Epub 2023 Jan 2.

Authors

Chloe Yi Shing Lim¹, Rebekah C Laidsaar-Powell², Jane M Young³, Daniel Steffens⁴, Nabila Ansari⁵, Grace Joshy⁶, Phyllis Butow⁷; advanced-CRC survivorship authorship group

Collaborators

advanced-CRC survivorship authorship group:
Chloe Yi Shing Lim, Rebekah C Laidsaar-Powell, Jane M Young, Michael Solomon, Daniel Steffens, Cherry Koh, Nabila Ansari, David Yeo, Prunella Blinman, Philip Beale, Bogda Koczwara, Gracy Joshy, Phyllis Butow

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 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.
⁵ Surgical Outcomes Research Centre (SOuRCe), Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia; RPA Institute of Academic Surgery (IAS), Royal Prince Alfred Hospital and University of Sydney, Sydney, NSW, Australia; Department of Colorectal Surgery, Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW, Australia. Electronic address: drnabilaansari@gmail.com.
⁶ National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT, Australia. Electronic address: grace.joshy@anu.edu.au.
⁷ 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: 36804325
DOI: 10.1016/j.ejon.2022.102265

Abstract

Purpose: Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study.

Method: Australian adults treated for CRC-A were recruited 0.5-2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare.

Results: Interviews from 38 participants (22 female) of median age 59 years (range 27-84) revealed six overarching themes relating to the safety, effectiveness, timeliness, patient-centredness, efficiency, and equity of CRC-A care: 1) Early experiences influence later perceptions; 2) Trusting the system, trusting the professionals; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up; 5) Whose role is it anyway? Gaps in responsibility for survivorship care; and 6) Useful or useless? Perceptions of psychosocial support.

Conclusions: Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare.

Keywords: Advanced cancer; Bowel cancer; Healthcare system; Psychosocial services; Quality of life; Supportive care.

MeSH terms

Adult
Aged
Aged, 80 and over
Australia
Colorectal Neoplasms* / psychology
Delivery of Health Care
Female
Humans
Middle Aged
Qualitative Research
Quality of Life*