Assessment of Parkinson’s disease levodopa-induced dyskinesia: a qualitative research study

The 26-item Parkinson disease dyskinesia scale (PDYS-26) was developed to assess the impact of Parkinson’s disease levodopa-induced dyskinesias (PD-LID). The purpose of this qualitative research study was to assess the content validity of the PDYS-26 in an independent sample and to use the findings to suggest a conceptual framework around the impact of PD-LID.

PD patients experiencing LID and their caregivers were recruited from four US clinical sites. Stage I involved 22 qualitative concept elicitation interviews with patients and caregivers, and 11 qualitative cognitive interviews (CI) with patients about the PDYS-26. The PDYS-26 was modified based on Stage I findings. Stage II consisted of 13 CI on the Modified PDYS.

Forty-six participants were interviewed across both stages of the study. Patient mean age was 67.3 (SD ± 9.55) years; 19 (54.3 %) female; 34 (97.1 %) white. The content validity of the PDYS-26 was generally supported. A revised conceptual framework with three hypothesized domains (body control, activities of daily living, social consequences) was developed. Modifications were made to the PDYS-26 (i.e., emphasizing LID in the instructions; response scale modification; deleting or modifying items), which resulted in the 22-item Modified PDYS.

Stage I and II findings suggested a number of modifications to the scale in order to improve the content validity. Psychometric testing of the revised scale with a larger patient sample is suggested to evaluate item performance, establish scoring, and provide quantitative support for the conceptual framework.