Abstract
Purpose :
The burden on age-related macular degeneration (AMD) patients themselves is well established, however, little is known about the impacts related to caring for family members with AMD. We quantified the burden, fatigue and depressive symptoms in family carers of people with AMD; and established the predictors of carer burden.
Methods :
This cross-sectional study analyzed 79 family carers of 79 patients with AMD recruited in January 2017 to August 2018 from eye clinics in Sydney, Australia. A questionnaire administered to carers collected data on: demographics (e.g. age, sex), health status (self-rated quality of life, presence of comorbidities), carer burden, fatigue and depressive symptoms. A brief questionnaire was also administered to AMD patients to collect data on demographics, presence of comorbidities and visual functioning (National Eye Institute Visual Function Questionnaire-25, NEI VFQ-25).
Results :
In this study, 72% of carers were the sole carer of their family member with AMD; and 41% of carers reported that the relative they provided care for was very or extremely dependent on them since their AMD diagnosis. Also, 89% of carers accompany their relatives to eye clinic appointments and 82% of AMD patients were receiving anti-VEGF injections. Family carers primarily helped AMD patients with their cooking (57%); cleaning (59%); and leaving the house (66%). Around 38% and 18% of family carers reported mild or moderate/severe burden, respectively. Women versus men had higher mean burden scores: 26.7±17.6 versus 19.9 ±12.7, respectively. Depressive symptoms and high levels of fatigue were present in 23% and 35% of family carers, respectively. Each unit increase in AMD patient NEI VFQ-25 and carer quality of life scores were associated with reduced odds of the carer experiencing moderate/severe burden: multivariable-adjusted OR 0.84 (95% CI 0.71-0.98) and 0.31 (95% CI 0.13-0.77), respectively. High level of dependency on the carer was associated with greater odds of mild carer burden: OR 9.61 (95% CI 1.98-46.8). Each 1-year increase in age of the AMD patient was associated with 60% higher odds of moderate/severe carer burden.
Conclusions :
Substantial burden, fatigue and depressive symptomology are experienced by family carers of people with AMD. Visual functioning and age of the relative with AMD; carer quality of life and dependency on the carer were independent predictors of carer burden.
This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.