The Cost of Survival: An Exploration of Colorectal Cancer Survivors\u27 Quality of Life and Experiences of Healthcare

Background and Aim: Following cancer treatment, colorectal cancer survivors may continue to experience a multitude of physical, psychological and social effects. Follow-up care is an integral part of cancer survivorship, yet less frequent contact with healthcare professionals after treatment may affect survivors perceptions of their care and access to formal support. In addition, the emphasis placed on monitoring for recurrence during follow-up may lead to unmet supportive care and informational needs. There is limited research to determine the impact of healthcare experiences upon cancer survivors quality of life. Therefore, this study seeks to understand colorectal cancer survivors quality of life, symptom experience and the healthcare factors which may influence their quality of life. Methodology: A pragmatic mixed methods sequential explanatory approach. Methods: A purposive sample of adult colorectal cancer survivors (n=304) were recruited from three public and private hospitals and 21 cancer support centres in Ireland. The sample, who were between six and 60 months post-diagnosis completed a questionnaire including the Functional Assessment of Therapy Colorectal Cancer Survey and the Patient Continuity of Care Questionnaire. A subsample of 22 survey participants took part in semi-structured interviews to elicit information about experiences relating to their quality of life, healthcare and unmet needs. Findings: On average, colorectal cancer survivors evaluated their quality of life positively. However, more than half were dissatisfied with their quality of life; more than three-quarters reported at least one negative consequence of their treatment. Survivors appeared to mediate dissatisfaction with their quality of life through a process of reframing their illness experience, including social comparison and use of optimistic coping strategies. Colorectal cancer survivors quality of life was associated with a selection of socio-ecological (insurance status, social difficulties), medical (tumour status), and healthcare (continuity of care, use of cancer support) variables. Although two-thirds of survivors were satisfied with their continuity of care, an undercurrent of positive and negative healthcare events were evident, influenced by behaviours or actions at individual, organisational and political levels. Negative care events diminished survivors autonomy, dignity and confidence in their self-management skills, and created an array of unmet information and supportive care needs. In response to these unmet needs, survivors developed a network of support beyond the healthcare system encompassing family members, social networks, local advocacy services and virtual communities. However, engagement with these networks was dependent upon the cultural context in which the individual resided and received healthcare and barriers to accessing support, such as awareness, local availability, perceived need, trustworthiness and stigma relating to discussion of symptoms. Discussion and Conclusion: The results of this mixed methods study demonstrate the importance of continuity of care and dissemination of cancer-related information in promoting more positive quality of life among colorectal cancer survivors. Given the relationship between poorer quality of life, greater social difficulty and participation in cancer support, strategies to address cancer survivors psychosocial needs are necessary. The study has implications for the recommendations of the 2017 National Cancer Strategy, particularly the development of cancer survivorship models of care; the implementation of cancer survivorship care plans, treatment summaries; and provision of psychosocial support. Most critically, given the finding that colorectal cancer survivors feel under-prepared for quality of life issues following treatment, there is a need for interventions to support the delivery of cancer survivorship information and assist survivors to develop self-management strategies. Recommendations are made for future research, healthcare delivery, and oncology policy, practice, and cancer support and advocacy services to begin to ameliorate the challenges and unmet needs associated with colorectal cancer survivorship