Prevalence vs impact: a mixed methods study of survivorship issues in colorectal cancer

Amanda Drury,Sheila Payne,Anne-Marie Brady

doi:10.1007/s11136-021-02975-2

Abstract

PurposeThis study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL).MethodsThis study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis (n = 304) were purposively recruited from three hospitals and twenty-one cancer support centres in Ireland. QoL was evaluated using the EuroQol and FACT-C questionnaires and results compared to population norms. 22 survey participants took part in semi-structured interviews exploring the impact of survivorship issues on their daily lives.ResultsWhile CRC survivors reported QoL outcomes comparable to or better than normative populations, 54% were dissatisfied with their QoL. The most common survivorship issues reported included negative body image (74%), fatigue (68%), sexual dysfunction (66%) and sleep disturbance (59%). Thematic analysis of the qualitative data illustrated survivors’ attempts to live with the impact of cancer and its treatment (loss, fear, impact) and striving to contextualise, reframe and understand the consequences of cancer and its treatment (control, vigilance, benefit). Within these themes, the cross-domain impact of less prevalent symptoms including bowel dysfunction (28–57%) and peripheral neuropathy (47%) were widely discussed.ConclusionsAlthough cancer survivors report positive QoL outcomes, many experience distressing physical, psychological and social effects. The findings suggest less common and difficult to manage symptoms are the greatest source of distress and unmet need. Support and information must be tailored to address survivors’ individual needs and preferences for support, informed by holistic person-centred assessment.

Highlights

Quality of Life (QoL) is complex; it is highly individual, influenced by values, expectations and cultures, manifesting in an individuals’ perception of their physical, psychological, social and functional well-being [1, 2]
This study found that while people living after colorectal cancer reported quality of life (QoL) levels comparable to members of the general population, more than half were dissatisfied with their QoL
The findings of this study demonstrate that cancer survivors report positive QoL outcomes, many may experience distressing physical, psychological and social effects

Summary

Introduction

Quality of Life (QoL) is complex; it is highly individual, influenced by values, expectations and cultures, manifesting in an individuals’ perception of their physical, psychological, social and functional well-being [1, 2]. Colorectal cancer (CRC) survivors’ QoL may improve over time, and for some, may reach levels that are comparable to normative populations and pre-diagnosis [3,4,5]. A substantial proportion of CRC survivors may experience distressing physical, psychological and social effects, persisting for years beyond diagnosis [6,7,8]. Cancer survivors may experience significant psychological distress related to fear of recurrence [10,11,12, 14, 15, 17]. Cancer survivorship represents a new normal, requiring significant adjustment and time to identify, implement and master self-management techniques [11, 16, 17, 20, 22]

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