The impact of informal care for patients with Pompe disease: an application of the CarerQol instrument.
Kanters TA, van der Ploeg AT, Brouwer WB, Hakkaart L
Molecular genetics and metabolism, 2013 Nov
Abstract
Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease.