Lived experiences and quality of life during survivorship in advanced colorectal cancer survivors: A qualitative approach

Abstract

Despite medical advances enabling longer survival for people with colorectal cancer (CRC), little is known about the lived experiences of CRC survivors. This thesis aimed to systematically review existing qualitative CRC survivorship research and conduct qualitative research to fill gaps found. A systematic review of 81 studies identified ongoing CRC impacts, particularly bowel dysfunction. Gaps identified included research in advanced CRC (CRC-A) survivorship, treatment-specific experiences, and employment/financial impacts. A qualitative study was conducted to explore survivors’ experiences 6-24 months after different CRC-A treatment pathways: pelvic exenteration (n=10), liver resection (n=9), cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS-HIPEC) (n=6), liver resection plus CRS-HIPEC (n=6), and palliative chemotherapy (n=7). Interviews underwent framework analysis, informed by quantitative data on quality of life (QoL), distress, and financial toxicity. Survivors reported life-changing side effects impacting QoL. CRC-A survivorship was seen as long and unpredictable. Survivors endured the complexity of managing multiple treatments, impacts, and multi-morbidity. Return to work was difficult, due to physical/functional limitations, unsupportive workplaces, and employers’ ignorance of CRC-A. Some participants felt lost in follow-up, confused about which doctors were responsible for managing survivorship. Many experienced fear of cancer progression and death anxiety, and used multiple coping strategies to manage these, including avoidance/distraction and acceptance. From these findings, this thesis provides recommendations on how CRC-A survivors may be better supported, including through routine monitoring and assessment of QoL throughout follow-up, multidisciplinary supportive care, upskilling and education of general practitioners and employers, and a focus on active-confronting and meaning-based psychological interventions for CRC-A survivors.