Measurement of patient-centered outcomes in Parkinson’s disease: What do patients really want from their treatment?

Abstract Background Parkinson’s disease (PD) impacts several domains of functioning, some of which may be neglected when designing treatment or evaluating outcome using current clinical standards. We therefore argue that taking the patients’ perspectives of their condition may allow for a more in-depth assessment of patient goals and subsequent tailoring of care. Methods One hundred and forty-eight patients with idiopathic PD completed a modified version of the Patient-Centered Outcomes Questionnaire (PCOQ-PD), to evaluate treatment success and expectations from the patient’s perspective across 10 motor and non-motor functional domains. We also examined patient subgroups based on importance of improvement in various domains. Results Patients’ ratings suggested there was substantial variation in functional interference that was generally unrelated to demographic variables. On average, across all domains, patients indicated a 50.32% reduction in symptoms would be successful (range = 40.63–58.23%), regardless of treatment experience. Change scores between patients’ usual levels of symptom interference and their treatment success levels suggested a greater degree of change was desired in motor versus non-motor domains ( p