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Health‐related quality of life in patients with progressive supranuclear palsy
Author(s) -
Schrag Anette,
Selai Caroline,
Davis Jennifer,
Lees Andrew J.,
Jahanshahi Marjan,
Quinn Niall
Publication year - 2003
Publication title -
movement disorders
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.352
H-Index - 198
eISSN - 1531-8257
pISSN - 0885-3185
DOI - 10.1002/mds.10583
Subject(s) - progressive supranuclear palsy , quality of life (healthcare) , medicine , physical medicine and rehabilitation , psychology , disease , psychotherapist
We assessed health‐related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty‐seven patients in all stages of PSP and their carers underwent a semistructured in‐depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item‐pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF‐36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ‐39 and the EQ‐5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ‐5D and the Parkinson's disease‐specific PDQ‐39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease‐specific QoL instruments for patients with PSP. © 2003 Movement Disorder Society