Kira Sophie van HofErasmus Medical Center Rotterdam, The Netherlands
Title: Caregiver burden, psychological distress and quality of life among informal caregivers of patients with head and neck cancer: a longitudinal study
Objective: An important source of support for head and neck cancer (HNC) patients are their informal caregivers. The aim of this study was to investigate caregiver burden among these informal caregivers, in relation to symptoms of anxiety and depression, quality of life (QoL) and demographic and clinical variables. Furthermore, we investigated the relationship between anxiety, depression and QoL in HNC patients and informal caregivers.
Methods: This study used data of 234 dyads of informal caregivers and patients, participating in the ongoing multicenter prospective cohort study NETherlands QUality of life and Biomedical cohort studies In Cancer (NET-QUBIC). Caregiver burden, psychological distress, global QoL, physical functioning and social functioning was measured from time of diagnosis up to 24 months after treatment. Mixed model analyses were used to investigate the outcomes over time.
Results: Caregivers reported a high level of self-esteem and at the same time a high caregiver burden, which decreased significantly during follow-up. Health problems due to caregiving was associated with psychological distress and reduced QoL. Sex, education, caregiver type, WHO performance status, comorbidity and disease stage were associated with caregiver burden and psychological distress of caregivers. Furthermore, we found an association between depression in caregivers and a reduced QoL in patients.
Conclusions: This study shows the high burden of caring for HNC patients, the impact of this burden on psychological distress of caregivers and the interaction of psychological functioning and QoL between caregiver and patient. We suggest that healthcare professionals should include caregivers in the counseling and psychological support they offer patients.
Kira van Hof graduated from medical school at Leiden University Medical Center in 2019 (summa cum laude). During her studies, she participated in research at the department of otorhinolaryngology. After graduation she started as a PhD-candidate at the Erasmus Medical Center evaluating the use of patient reported outcome data in otorhinolaryngology and head and neck oncology. The first part of her research focusses on the impact of caring for head and neck cancer patients on their informal caregivers (i.e. spouses or children). Another project is the implementation of an electronic patient reported outcome (ePRO) system at the outpatient clinic of the otorhinolaryngology department at a partner hospital in the area (Maasstad Hospital Rotterdam). There, she also works as a part-time resident at the department of otorhinolaryngology.