RESUMO
OBJECTIVE: Knowledge of patients' treatment needs is an important requirement for comprehensive long-term patient care. The objective of this investigation was to assess the requirements of patients with Parkinson's disease (PD) regarding pharmacotherapy. METHODS: A total of 17,500 members of the German Parkinson Association were given the opportunity to anonymously answer a questionnaire about their health-related quality of life, PD pharmacotherapy and their improvement suggestions for new PD medication. RESULTS: Answers from 6351 patients were available for analysis. The majority (87.2%) of patients were older than 60 years; 88.9% had been diagnosed with PD for longer than 3 years and 84.4% selected one of the three most severe categories (categories 1-3 on a 6-point scale) when rating the impact of PD on their quality of life. Symptoms that were regarded as very important for improvement with pharmacotherapy included motor fluctuations (66.3%), early morning akinesia (55.4%) and sleep disturbances (43.5%). Properties of a new PD medication that were rated as very important included continuous drug delivery over 24 hours (66.6%) and 24-hour symptom control (55.8%). The majority of patients used physicians (84.2%) and/or self-help groups (69.4%) to obtain information about PD. Topics of particular interest included comorbid diseases (78.3%), mobility and exercise (77.3%) and research (53%). CONCLUSION: PD has a major impact on patients' quality of life. From the patient's perspective, PD pharmacotherapy needs to address a range of symptoms including not only motor symptoms, but also non-motor symptoms such as sleep disturbances. In selecting the most appropriate treatment regimen, patient preference is an important consideration.