The Impacts of Caregiving for Patients with X-Linked Retinitis Pigmentosa (XLRP): Findings from the EXPLORE XLRP-2 Study.

This study explored how caring for people with X-linked retinitis pigmentosa (XLRP), an inherited eye condition that causes progressive vision loss, affects family members and other informal caregivers. Among the 68 caregivers included in the analysis, caregivers spent an average of almost 29 hours per week providing care. While most employed caregivers worked, some worked part time, and some unemployed caregivers reported that caring responsibilities contributed to their unemployment. The study also found that 23% of caregivers reported some level of depression and 46% reported anxiety. These findings highlight the time commitment and potential emotional and employment impacts of caring for people with XLRP.

Weber, M., Parmeggiani, F., Bremond-Gignac, D. et al. The Impacts of Caregiving for Patients with X-Linked Retinitis Pigmentosa (XLRP): Findings from the EXPLORE XLRP-2 Study. Adv Ther 42, 2922–2936 (2025). https://doi.org/10.1007/s12325-025-03196-6

Published in Springer Nature, Advances in Therapy 29 April 2025