TY - JOUR
T1 - The impact of participation restrictions on everyday life in long-term colorectal cancer survivors in the EnCoRe study
T2 - A mixed-method study
AU - Breedveld-Peters, Jose J. L.
AU - Bours, Martijn J. L.
AU - Cords, Charlotte
AU - Ditters, Imke A. M.
AU - Habraken, Vera
AU - Jongen, Michelle W. J.
AU - Weijenberg, Matty P.
N1 - Funding Information:
This work was funded by a grant from the Alpe d’HuZes Foundation within the research program ‘Leven met kanker’ of the Dutch Cancer Society (Grant No. UM-2010-4867 ).
Funding Information:
J.J.L. Breedveld-Peters is supported by a grant from Kankeronderzoekfonds Limburg (part of Health Foundation Limburg) (Grant No. 00005739 ).
Funding Information:
We also would like to thank all funders for their financial support of the EnCoRe study.
Funding Information:
Following diagnosis and treatment, colorectal cancer (CRC) survivors often experience persisting health and functioning problems due to the cancer and its treatment, such as gastrointestinal problems, cancer-related fatigue, symptoms of chemotherapy-induced peripheral neuropathy (CIPN), and reduced physical and emotional functioning (Altschuler et al., 2009; Averyt and Nishimoto, 2014; Bols et al., 2015; Caravati-Jouvenceaux et al., 2011; Denlinger and Barsevick, 2009; Desnoo and Faithfull, 2006; Domati et al., 2011; Drury et al., 2017; Grant et al., 2011; Harrington et al., 2010; Jansen et al., 2010; LeMasters et al., 2014; McCaughan et al., 2012; McMullen et al., 2008; Mols et al., 2014a,b; Nikoletti et al., 2008; Ramirez et al., 2009; Sweeney et al., 2006). These problems can severely limit the ability of CRC survivors to perform daily activities such as self-care, and may restrict their level of participation in life situations. This refers to their ability to participate in domestic life (such as performing household tasks), to function as a member of society (e.g. the capacity to work), and to participate in interpersonal interactions and relationships, and in community and social events (World Health Organization, 2001). However, until now it remains mostly unknown how health and functioning problems influence participation of long-term CRC survivors. Moreover, it is of importance to know what health and functioning problems mean to CRC survivors, whether or not CRC survivors are satisfied with their current participation, as well as factors related to their level of satisfaction, to inform development of strategies to address participation problems of CRC survivors.Research on CRC survivors' satisfaction with participation is limited. Those studies are usually performed in mixed populations of cancer survivors, focus on specific aspects of participation (and implicitly satisfaction with participation), for example on social (Wright et al., 2005) or work-related difficulties only (McGrath et al., 2017; Rasmussen and Elverdam, 2008), or use specific theoretical models. A study of Devins in six common cancers, including gastrointestinal cancer, using the illness intrusiveness model, concludes that the psychosocial impact of a chronic life-threatening disease plays a role especially instrumental life domains, like work, finances, and health, and depends on the context in which it is experienced (Devins et al., 2006). A prospective study in CRC survivors observed that low optimism, poorer social support, a more negative cognitive appraisal and younger age were associated with poorer life satisfaction (defined as the participants' subjective cognitive well-being) and health-related quality of life, specifically in a later stage of disease and in females (Dunn et al., 2013). A review of Catt et al. on the impact of cancer on patients? lives in a population with different cancer types, found high levels of financial distress and social difficulties following cancer, but also the need for studies investigating patient-reported outcomes focusing on roles and responsibilities (e.g. related to work) (Catt et al., 2017).Healthcare services need to offer long-term follow up care to CRC survivors, to enable identification of health information and supportive care needs of those CRC survivors who suffer from a diversity of long-term health and functioning problems, that impact their ability to participate in activities of daily living and as a member of society. Both the quantitative and qualitative results suggest that there is a need to offer targeted evidence-based interventions to address problems adequately. Other studies emphasize the need to support individual CRC survivors in managing their disease, and address their met and unmet needs, to support their recovery as well (Drury et al., 2017; McCaughan et al., 2012). This starts with awareness amongst health care professionals of existing problems in CRC survivors. Based on identified physical and psychosocial problems a (multi modal) intervention program could be offered comprising for example a physical activity program to reduce fatigue, psychological support to cope with complaints, or reduce stress, and dietary advice to handle bowel complaints.This study suggests that persisting health and functioning problems related to the prior CRC diagnosis and treatment in long-term CRC survivors can considerably restrict their participation in everyday life situations, as well as their feeling of satisfaction with their current level of participation. This study contributes to a better understanding of cancer- and treatment-related problems that long-term CRC survivors can face on a daily basis in their everyday life. This implies that CRC survivors need to be supported to enable them to manage their after-effects of CRC. In the follow up care for CRC survivors, health professionals need to identify health information and supportive care needs of CRC survivors. Detections of problems CRC-survivors experience, and that affect their functioning and participation, can be integrated in routine follow up care visits. Extension of the period of follow up care may be needed for that. Furthermore, problems need to be adequately addresses with evidence based interventions in the area of physical health, psychological health, and social health. In this way survivors who suffer from long-term cancer- and treatment related problems affecting their functioning and participation, are supported to improve management of complaints. Future studies are needed to provide more insight of how to improve participation of CRC survivors.We would like to thank Saeed Banaama, Claartje Broeren, Judith Ripken, Dani?lle Snijders, and Rom?e Tibosch, for their contribution to the study, regarding study design, development of study procedures and documents, execution of interviews, data entry and data analyses during their participation in the Honours Program 2013?2015 of the Bachelor Programs Medicine, Health Sciences and European Public Health of the Faculty of Health, Medicine and Life Sciences, Maastricht University. We also would like to thank all funders for their financial support of the EnCoRe study. This work was funded by a grant from the Alpe d'HuZes Foundation within the research program ?Leven met kanker? of the Dutch Cancer Society (Grant No. UM-2010-4867). J.J.L. Breedveld-Peters is supported by a grant from Kankeronderzoekfonds Limburg (part of Health Foundation Limburg) (Grant No. 00005739). M.J.L. Bours is supported by a grant from Kankeronderzoekfonds Limburg (part of Health Foundation Limburg) (Grant No. 00005739) and a grant from the Alpe d'HuZes Foundation within the research program ?Leven met kanker? of the Dutch Cancer Society (Grant No. UM-2012-5653).
Publisher Copyright:
© 2020 Elsevier Ltd
PY - 2020/4
Y1 - 2020/4
N2 - Purpose: Knowledge about long-term colorectal cancer (CRC) or treatment related health and functioning problems and on its impact on participation of CRC survivors in domestic life and in society is limited. We aimed to explore the nature and impact of cancer (treatment) related participation restrictions on everyday life of long-term CRC survivors, their current satisfaction with participation, and associations of health and functioning problems with participation satisfaction, using the International Classification of Functioning, Disability and Health (ICF) to comprehensively study participation.Method: Mixed-method study in 2-10 years post-diagnosis stage I-III CRC survivors (n = 151) from the cross-sectional part of the EnCoRe study. Participation restrictions were explored by semi-structured interviews in a subsample reporting participation restrictions (n = 10). Role functioning (SF36-Health Survey), fatigue (Checklist Individual Strength), and peripheral neuropathy symptoms (EORTC QLQ-CIPN20) were assessed in all participants and associations with self-reported participation satisfaction were analyzed by multivariable logistic regression models.Results: 19% of CRC survivors reported dissatisfaction with participation. Participation restrictions were reported for interpersonal relationships, work/employment, and social/civic life. CRC survivors reporting better physical and emotional role functioning were significantly less likely to be dissatisfied with their participation, whereas survivors reporting higher levels of fatigue or more peripheral neuropathy symptoms were more likely to be dissatisfied with participation.Conclusions: Colorectal cancer (treatment) related health and functioning problems negatively impacts the ability of nearly 1 in 5 long-term CRC survivors to participate in everyday life situations and their satisfaction with participation. Follow-up care needs to be able to identify and address these problems.
AB - Purpose: Knowledge about long-term colorectal cancer (CRC) or treatment related health and functioning problems and on its impact on participation of CRC survivors in domestic life and in society is limited. We aimed to explore the nature and impact of cancer (treatment) related participation restrictions on everyday life of long-term CRC survivors, their current satisfaction with participation, and associations of health and functioning problems with participation satisfaction, using the International Classification of Functioning, Disability and Health (ICF) to comprehensively study participation.Method: Mixed-method study in 2-10 years post-diagnosis stage I-III CRC survivors (n = 151) from the cross-sectional part of the EnCoRe study. Participation restrictions were explored by semi-structured interviews in a subsample reporting participation restrictions (n = 10). Role functioning (SF36-Health Survey), fatigue (Checklist Individual Strength), and peripheral neuropathy symptoms (EORTC QLQ-CIPN20) were assessed in all participants and associations with self-reported participation satisfaction were analyzed by multivariable logistic regression models.Results: 19% of CRC survivors reported dissatisfaction with participation. Participation restrictions were reported for interpersonal relationships, work/employment, and social/civic life. CRC survivors reporting better physical and emotional role functioning were significantly less likely to be dissatisfied with their participation, whereas survivors reporting higher levels of fatigue or more peripheral neuropathy symptoms were more likely to be dissatisfied with participation.Conclusions: Colorectal cancer (treatment) related health and functioning problems negatively impacts the ability of nearly 1 in 5 long-term CRC survivors to participate in everyday life situations and their satisfaction with participation. Follow-up care needs to be able to identify and address these problems.
KW - Societal participation
KW - Participation restrictions
KW - International classification of functioning
KW - Disability and health
KW - Colorectal cancer survivor
KW - QUALITY-OF-LIFE
KW - INDUCED PERIPHERAL NEUROPATHY
KW - PHYSICAL-ACTIVITY
KW - HEALTH SURVEY
KW - FATIGUE
KW - FRAMEWORK
KW - WORK
KW - QUESTIONNAIRE
KW - EXPERIENCES
KW - VALIDATION
U2 - 10.1016/j.ejon.2020.101724
DO - 10.1016/j.ejon.2020.101724
M3 - Article
C2 - 32044722
SN - 1462-3889
VL - 45
JO - European Journal of Oncology Nursing
JF - European Journal of Oncology Nursing
M1 - 101724
ER -