Fig. 2

Patient roles for study design, identifying concepts of interest, and evaluating legacy clinical outcomes assessments. The figure displays the extent of patient contribution [26,27,28], which includes PRO research design, development of the conceptual model of the early-stage Parkinson’s experience, and appraisal of existing COAs in this context of use and identification of cardinal concepts. In addition to these patient roles, interviewees in phase I acted as ‘patient discussants’: 50 people living with early-stage Parkinson’s and 9 caregivers were interviewed to elicit concepts of interest and to appraise pre-existing PRO instruments, namely the MDS-UPDRS parts Ib and II and the PDQ-39. COA clinical outcomes assessment, DMT disease-modifying therapy, PDQ-39 Parkinson’s Disease Questionnaire, PIP Patient Involvement Plan, PRO patient-reported outcome, MDS-UPDRS Movement Disorder Society-Unified Parkinson’s Disease Rating Scale