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

Abstract

Purpose This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL). Methods This 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. Results While 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. Conclusions Although 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.

A new self-understanding as chemo sufferer - a phenomenological study of everyday life with chemotherapy induced neuropathy among survivors after colorectal cancer

“…Consequently, the sensory disturbances may affect the way the embodied self becomes a specific embodied person that expresses itself in a specific stylistic way different from other people (Forlé, 2019 ). The participants in our study were affected in their personal style of action and withdrawal from social contacts and they avoided activities that would expose them as sick or disabled in accordance with other studies (Drury et al, 2021 ; Tanay & Armes, 2019 ). Thus, they minimized the risk of being compared with other persons and seeing oneself in the eyes of others, which according to Merleau-Ponty ( 2014 ) is a price to pay for being in the world (Merleau-Ponty, 2014 ).…”

“…Following this, the disruption of everyday life was extensive and involved physio- and psychosocial aspects and affected the participants as unified body-subjects formed by bodily interactions with the world, culture and environment (Merleau-Ponty Merleau-Ponty, 2004, 2014). As the participants experienced that people in their surroundings did not acknowledge the excessive influence of sensory disturbances on their everyday life, they were left alone to manage their symptoms when they paid the price for being alive, according to the studies of Drury et al ( 2021 ) and Tanay and Armes ( 2019 ). Thus, our findings suggested, the participants also were affected by a cultural expectation of understanding of being cured and free of cancer is the same as having completely recovered.…”

Persisting Deficits in Health-Related Quality of Life of Colorectal Cancer Survivors 14–24 Years Post-Diagnosis: A Population-Based Study

“…It is intuitive that persistent bowel problems could hinder daily activities and restrict social participation [ 25 ]. CRC survivors described feelings of embarrassment and a loss of control resulting from bowel dysfunction, and struggles to self-manage these problems, e.g., toilet mapping, extra planning, or diet changes [ 26 , 27 ].…”

Relationships Between Colorectal Cancer Survivors’ Positive Psychology, Symptoms, and Quality of Life

“…The most common symptom clusters are (a) pain, fatigue, and sleep disturbances, (b) psychological distress symptoms of anxiety, stress, and depression, and (c) cognitive symptoms (concentration loss or difficulty, memory, forgetfulness, and stress; Albusoul et al, 2017; Barsevick, 2016; Miaskowski et al, 2017; Sheikh-Wu et al, 2020). If symptoms or symptom clusters are left unmanaged, CRC survivors have a higher risk of developing chronic conditions such as depression, negatively impacting long-term outcomes, recovery, and ultimately quality of life (Abdul Karim et al, 2021; Barsevick, 2016; Drury et al, 2021; Miaskowski et al, 2017).…”

“…For example, colorectal cancer (CRC) survivors, persons diagnosed with cancer of the digestive tract, colon, or rectum, are living longer, well beyond 20-years post-diagnosis (Siegel et al, 2019). However, because of cancer and its treatments, CRC survivors continue to report adverse outcomes such as symptoms (American Cancer Society, 2021; Deshields et al, 2014; Drury et al, 2021; Miaskowski et al, 2017; Siegel et al, 2019). Symptoms of peripheral neuropathy, psychological distress, sexual dysfunction, abdominal pain or cramping, and fatigue are reported by CRC survivors, and these symptoms are more common during acute cancer survivorship, the time from diagnosis to completion of treatment (Juul et al, 2018; Lim et al, 2021; Mullan, 1985; Rasmussen et al, 2015; Sheikh-Wu et al, 2021, 2022b).…”