Longitudinal Analysis of Caregiver Burden in Head and Neck Cancer

Abstract

ImportanceDespite the critical role of caregivers in head and neck cancer (HNC), there is limited literature on caregiver burden (CGB) and its evolution over treatment. Research is needed to address evidence gaps that exist in understanding the causal pathways between caregiving and treatment outcomes.ObjectiveTo evaluate the prevalence of and identify risk factors for CGB in HNC survivorship.Design, Setting, and ParticipantsThis longitudinal prospective cohort study took place at the University of Pittsburgh Medical Center. Dyads of treatment-naive patients with HNC and their caregivers were recruited between October 2019 and December 2020. Eligible patient-caregiver dyads were 18 years or older and fluent in English. Patients undergoing definitive treatment identified a caregiver as the primary, nonprofessional, nonpaid person who provided the most assistance to them. Among 100 eligible dyadic participants, 2 caregivers declined participation, resulting in 96 enrolled participants. Data were analyzed from September 2021 through October 2022.Main Outcomes and MeasuresParticipants were surveyed at diagnosis, 3 months postdiagnosis, and 6 months postdiagnosis. Caregiver burden was evaluated with the 19-item Social Support Survey (scored 0-100, with higher scores indicating more support), Caregiver Reaction Assessment (CRA; scored 0-5, with higher scores on 4 subscales [disrupted schedule, financial problems, lack of family support, and health problems] indicating negative reactions, and higher scores on the fifth subscale [self-esteem] indicating favorable influence); and 3-item Loneliness Scale (scored 3-9, with higher scores indicating greater loneliness). Patient health-related quality of life was assessed using the University of Washington Quality of Life scale (UW-QOL; scored 0-100, with higher scores indicating better QOL).ResultsOf the 96 enrolled participants, half were women (48 [50%]), and a majority were White (92 [96%]), married or living with a partner (81 [84%]), and working (51 [53%]). Of these participants, 60 (63%) completed surveys at diagnosis and at least 1 follow-up. Of the 30 caregivers, most were women (24 [80%]), White (29 [97%]), married or living with a partner (28 [93%]), and working (22 [73%]). Caregivers of nonworking patients reported higher scores on the CRA subscale for health problems than caregivers of working patients (mean difference, 0.41; 95% CI, 0.18-0.64). Caregivers of patients with UW-QOL social/emotional (S/E) subscale scores of 62 or lower at diagnosis reported increased scores on the CRA subscale for health problems (UW-QOL–S/E score of 22: CRA score mean difference, 1.12; 95% CI, 0.48-1.77; UW-QOL–S/E score of 42: CRA score mean difference, 0.74; 95% CI, 0.34-1.15; and UW-QOL–S/E score of 62: CRA score mean difference, 0.36; 95% CI, 0.14-0.59). Woman caregivers had statistically significant worsening scores on the Social Support Survey (mean difference, −9.18; 95% CI, −17.14 to −1.22). The proportion of lonely caregivers increased over treatment.Conclusions and RelevanceThis cohort study highlights patient- and caregiver-specific factors that are associated with increased CGB. Results further demonstrate the potential implications for negative health outcomes for caregivers of patients who are not working and have lower health-related quality of life.

Trajectory of Caregiver Burden and Associated Factors in Family Caregivers of Individuals with Colorectal Cancer: A Longitudinal, Observational Multicenter Study

“…Considering that FCs with higher education have better comprehension ability, they can better master and understand disease knowledge and nursing skills. 41 Schandl, et al 42 suggests that FCs with lower levels of education are more likely to have uncertainties about the disease and anxiety and depression, and they may have limited ability to find or use helpful resources.…”

Addressing Financial Toxicity in Head and Neck Cancer—A Crucial Imperative

“…Although less studied, caregivers also experience FT due to employment disruptions and loss of income during caregiving. Beyond financial worries, caregivers are also at risk of developing health problems, with caregivers of nonworking patients having the highest risk …”

Unsung heroes in the battle against cancer

“…Furthermore, caregiver strain can also manifest in physical reactions such as fatigue and hypervigilance. Various sustainable interventions (Chow et al 2023b;Kudrick et al 2023) have been suggested to address their needs, including face-to-face and telehealth-based training programs, education on the impact of caregiving, coping strategies, self-care approaches, and assistance with organizational planning facilitated by social workers. By implementing these interventions, caregivers will receive the necessary assistance and resources to address their challenges and improve their well-being.…”