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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.

doi: S1096-7192(13)00268-0