Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: meta-synthesis of qualitative studies

Abstract

Background: Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors' experiences of long-term impacts of treatment, which can in turn inform decision making. This systematic review aimed to identify and synthesise CRC survivors' experiences of long-term impacts on health-related quality of life. Methods: We searched Medline, Embase and PsychINFO from inception to January 2019. Qualitative studies describing CRC survivors' experiences at least 1-year post-treatment were included. Study eligibility, quality assessment (COREQ guidelines), and data synthesis was performed independently by two reviewers and discussed with the study team. Results: Of 1363 papers retrieved, 20 reporting 15 studies met eligibility. Thematic synthesis produced 12 themes: symptoms, physical, social, psychological and sexual functioning, impact on relationships, informal care needs provided by family/friend, supportive care needs provided by healthcare professional, health care experiences, health behaviour, financial toxicity and occupational experiences. Stoma problems (e.g. leakage, skin irritation) were common in ostomates. Survivors with no/reversed stoma experienced unexpected, longterm altered and unpredictable bowel functioning. Survivors often regulated timing, amount and foods consumed to manage bowel functioning. Less common symptoms included fatigue, impaired sleep and anal pain. Stoma problems and altered bowel functioning impaired survivors' physical, social, sexual and psychological functioning. Cognitive functioning and heredity issues were not reported in any paper. Conclusion: CRC survivors experience ongoing symptoms and functioning impairments more than 1-year posttreatment completion. Many survivors find their own ways to manage symptoms rather than seek professional help. Follow-up care for CRC survivors should integrate screening for long-term effects and provide targeted supportive care.

Psychometric Properties of New Subscales of the Ostomy Adjustment Scale: A Cross-Sectional Study

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Systematic review of clinical practice guidelines for colorectal and anal cancer: the extent of recommendations for managing long-term symptoms and functional impairments

“…This knowledge gap has implications for both clinicians, patients, and their informal caregivers. A previous review showed that many CRC survivors find ways to self-manage their symptoms through trial and error rather than seek professional help [30]. Self-help strategies are often not evidence-based, so it may not be effective and perhaps even detrimental, worsening symptoms or impairment.…”

Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study

“…To develop a set of domains and subdomain items for the a priori analytical framework, we reviewed literature on core outcome sets for PRE and PRO measures [2,23,53] and mixed-methods approaches for analyzing PRE and PRO data [12,[54][55][56][57]. Our conceptual approach to PRE and PRO domain coding is presented in Figure 3.…”