Experiences of colorectal cancer survivors in returning to primary coordinated healthcare following treatment

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 longterm 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 posttreatment 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.

”Being ill was the easy part”: exploring cancer survivors’ reactions to perceived challenges in engaging with primary healthcare

“…The finding that cancer survivors may feel obliged to engage in activities they experience as burdensome and unwarranted to manage their PHC contacts and needs corresponds to what has been found in previous studies in different countries (Aase et al, 2022 ; Handberg & Maribo, 2020 ; Lawn et al, 2017 ; Rutherford et al, 2023 ). Active management of one’s health is a known way to cope with having a cancer diagnosis (Beynon et al, 2015 ).…”

“…While there are many studies on how people with different cancer forms cope with the impact that the disease and its treatment have on their lives (Lashbrook et al, 2018 ), their reactions to poor healthcare access or performance have not enticed the same interest. It is known that unsatisfactory relations with healthcare providers evoke negative feelings in people with cancer (Aase et al, 2022 ; Glasdam et al, 2020 ; Jefford et al, 2008 ; Rutherford et al, 2023 ), and that they employ strategies to manage such relations (Tan et al, 2018 ). However, there is still a need for exploration of how adverse experiences with health services may affect cancer survivors in the context of different national healthcare systems and branches of healthcare.…”

Experiences and perspectives of colorectal cancer survivors and general practitioners on the delivery of survivorship care in general practice: a mixed methods study

“…This study reports on survey findings from CRC survivors and GPs, and interviews conducted with GPs. The findings from CRC survivor interviews are presented separately (Rutherford et al 2023) due to the richness of the data describing their experiences and life impacts, warranting a standalone paper.…”