Presentation (CTI)

OBJECTIVES: Severe visual impairment affects not only patients but also their informal caregivers, whose quality of life (QoL) is often overlooked. Approximately 900 rare diseases can lead to sight loss, many without effective treatments, creating significant psychosocial and practical burdens for caregivers (ERN-Eye, 2024). The Objective of this research is to systematically review the association between caregiver QoL and the care provided to adults with severe visual impairment, with a focus on rare eye diseases such as Retinitis Pigmentosa (RP) and Leber’s Hereditary Optic Neuropathy (LHON) (NICE, 2024).
METHODS: A PRISMA-adherent systematic literature review (Page et al., 2021) was conducted using Embase, MEDLINE, and Cochrane Library databases. Studies published before June 2024 were included if they explored caregiver burden and QoL in adults (≥18 years) with sight loss. Data were analyzed using qualitative content analysis (Vaismoradi, 2016).
RESULTS: Six publications met the eligibility criteria. Key themes included: 1. Negative association between severity of visual impairment and caregiver anxiety, spousal strain, and intensity of informal care. 2. Influence of patient and caregiver demographics on caregiving experience. 3. High prevalence of depressive symptoms and overcontrolled coping among caregivers, with female caregivers most at risk. Survey data from LHON patients (LHON Society, 2025) published in a NICE technology appraisal corroborated these findings, revealing significant emotional, financial, and social challenges for caregivers.
CONCLUSIONS: Caregiver QoL is profoundly impacted by adult sight loss, yet remains under-researched. Current evidence highlights urgent need for interventions addressing caregiver mental health, coping strategies, and financial support. Future Research Directions: - Development and evaluation of targeted psychosocial interventions for caregivers. - Longitudinal studies to assess changes in caregiver burden over time. - Exploration of cultural and socioeconomic factors influencing caregiver experiences. - Integration of caregiver QoL metrics into health technology assessments (HTAs) for rare eye disease treatments.