Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

Abstract

Introduction Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment.

Financial toxicity following surgical treatment for colorectal cancer: a cross-sectional study

“…In our study, lack of high levels of social support was another factor associated with financial toxicity in the colorectal cancer population. The finding of our study is consistent with the previous result [ 29 ]. Nearly one-third of patients with colorectal cancer had decreased levels of social support after diagnosis and treatment [ 39 ], and only 14% of participants in this study had high levels of social support.…”

Quality of life and perceived burden of the primary caregiver of patients aged 70 and over with cancer 5 years after initial treatment

“…A clinically meaningful increase was observed, without statistical significance, for mental health. These results are only somewhat consistent with the rare previous studies [ 5 , 11 ]. The present study considered caregiving status whereas other studies, such as Kim et al [ 11 ], only included current caregivers, which could explain some differences.…”

“…Concerning the caregiver’s HRQoL, significant decreases over time were observed for physical functioning, vitality, and role emotional. A study investigated QoL in the caregivers of patients of all ages 3 months after the end of adjuvant chemotherapy for colon cancer and showed that caregivers remained burdened and distressed [ 5 ].…”

“…Very often, being a primary caregiver, i.e., the person who has the duty of caring for someone else, leads to changes that can have a potentially negative impact on social life (activities, leisure) and health-related quality of life (HRQoL), which is a self-reported measure of the health-related well-being, including spirituality, health, activity level, social support, resources, satisfaction with personal accomplishments, and life situations [ 2 – 4 ]. In a recent study, 20% of caregivers remained burdened and distressed after the patient’s treatment had ended [ 5 ].…”

Taking Care of an Adolescent and Young Adult Cancer Survivor: A Systematic Review of the Impact of Cancer on Family Caregivers

“…Approximately 20% of caregivers of adult patients reported high distress and burden, even after treatment. The burden and distress experienced by the family caregiver at baseline were predictors of their well-being after the patients’ treatments ended [ 2 ]. Additionally, the incidence of distress was higher when the patient reported high distress and poor physical functioning and when the caregiver reported a high burden and low social support [ 1 ].…”