Health-related quality of life and caregiver burden of pediatric patients with inborn errors of metabolism in Japan using EQ-5D-Y, PedsQL, and J-ZBI.
Keiko KonomuraChikahiko NumakuraAkari Nakamura-UtsunomiyaEri HoshinoGo TajimaHironori KobayashiKimitoshi NakamuraNobuyuki ShimozawaRyosuke BoTakeru ShiroiwaYosuke ShigematsuTakashi FukudaPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2024)
The HRQoL of patients with IEM without developmental disabilities in our study was similar to that of the general Japanese population. The HRQoL of patients with IEM with developmental disabilities was low and associated with a tendency towards an increased burden of care.