Abstract

IntroductionCaring 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 methodsThis 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.ResultsBaseline 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.ConclusionWhen 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.

Highlights

  • Caring for a significant other during cancer treatment can be demanding

  • We explored the association between informal caregiver burden and distress and patient distress before, during, and after adjuvant chemotherapy

  • Of 76 eligible patients and their informal caregivers, 62 (82%) dyads enrolled in the study, and 14 (18%) declined participation, mostly because participation was considered too burdensome

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Summary

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 (SelfPerceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND36), 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. Patients receive adjuvant chemotherapy containing fluoropyrimidines and oxaliplatin (i.e., 5FU/leucovorin with oxaliplatin (FOLFOX) or capecitabine with oxaliplatin (CAPOX)), or capecitabine monotherapy when oxaliplatin is contra-indicated [4, 5]. Being diagnosed with cancer and receiving cancer treatment impact the patient and can cause psychological distress [6]

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