Value in Health Volume 22, Supplement 3, November 2019, Pages S758-S759, PND113
OBJECTIVES: Parkinson’s disease is a chronic, neurodegenerative disorder affecting around 145,000 people in the UK. Measures of quality of life (QoL) and treatment satisfaction are important for Parkinson’s treatment trials, in determining the efficacy and acceptability of treatments. This paper describes the design of the individualised Parkinson’s Dependent Quality of life (Parkinson’sDQoL) and the Parkinson’s Treatment Satisfaction Questionnaire (Parkinson’sTSQ).
METHODS: Nineteen people with Parkinson’s disease, recruited from Cambridge and Newcastle services, were interviewed about the impact of Parkinson’s on their QoL and their experience of treatment to design questionnaires needed for a research programme on visual hallucinations in people with Parkinson’s, dementia, or eye disease (SHAPED). A draft Parkinson’sDQoL, based on the questionnaire template from the Audit of Diabetes Dependent Quality of Life (ADDQoL), included selected items from a library of items from all condition-specific -DQoL measures. Initial item selection was guided by the literature on the effects of Parkinson’s on QoL. Draft items were modified, removed and added as needed within and between interviews until no further changes were required. The Parkinson’sTSQ was similarly modelled on a template from the Diabetes Treatment Satisfaction Questionnaire (DTSQ) and library of items from all condition-specific -TSQs.
RESULTS: Participants included 8 women, 11 men (M=73.17 years, SD=6.97, range=64-83): 3 were single, 16 married. The 23-item Parkinson’sDQoL designed includes 15 items unchanged and 6 modified from the -DQoL library, and 2 new items (making myself understood and taking care of my health). The Parkinson’sTSQ has 11 items, all from the -TSQ library with no modifications.
CONCLUSIONS: The existing –DQoL and –TSQ templates and item libraries facilitated the design of new measures for people with Parkinson’s. Psychometric analyses are underway to establish the optimal selection of items for scoring on common metrics to allow for comparison with –DQoL and –TSQ measures for other conditions.
