The impact of caring for an individual with aromatic l-amino acid decarboxylase (AADC) deficiency: a qualitative study and the development of a conceptual model.
Hanna SkrobanskiKate WilliamsChristian WernerSian O'NeillKatharina BueschSarah AcasterPublished in: Current medical research and opinion (2021)
This is the first qualitative study to report on the experience of caring for an individual with AADC deficiency. Caregivers reported that caring had a substantial multifaceted impact on their lives. These findings highlight the importance of considering the caregiver experience when evaluating the burden of AADC deficiency.