Requirements for Parkinson’s disease pharmacotherapy from the patients’ perspective: a questionnaire-based survey

Abstract

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.

Keywords::

• Comprehensive patient care
• Parkinson’s disease
• Patient needs (medical needs)
• Quality of life

Transparency

Declaration of funding

The questionnaire was devised by the authors in association with UCB Pharma, Monheim am Rhein, Germany. Data analyses were conducted by UCB Pharma, Monheim am Rhein, Germany.

Declaration of financial/other relationships

U.W. has acted as a consultant for Boehringer Ingelheim, GlaxoSmithKline, Lifescience KG, Novartis Pharmaceuticals, Orion Pharma, Schering AG, Schwarz-Pharma, Teva and UCB Pharma and received honoraria from his contracts with these companies. He has received research grants from BMBF, DFG, NAF, Stiftung Doppelfeld, Stiftung Verum, dPV, Merck KgaA and Pharmacia & Upjohn. G.F. has acted as a consultant for Boehringer Ingelheim, Desitin, Novartis Pharmaceuticals, Orion Pharma and UCB Pharma and received honoraria from his contracts with these companies as well as from GlaxoSmithKline, MEDA Pharma and Solvay Pharma. N.R. and O.R. are employees of UCB Pharma, Monheim am Rhein, Germany. J.K. has acted as an adviser and/or consultant for UCB Pharma, Boehringer Ingelheim, GlaxoSmithKline, Merz Pharmaceuticals and Hoffmann-LaRoche and has received honoraria from his contracts with these companies.

Acknowledgments

The authors would like to thank the German Parkinson Association for their assistance in conducting this survey. Writing assistance was provided by Hannah Carney, PhD (Evidence Scientific Solutions, London, UK) and was contracted by UCB Pharma, Brussels, Belgium. Publication coordination was provided by Ging-Ging Li (UCB Pharma, Brussels, Belgium).

Previous presentation: abstract presented at the 2nd World Parkinson Congress, 28 September – 1 October 2010, Glasgow, UK: Wüllner U, Fuchs G, Reketat N, Randerath O, Kassubek J. Pharmacotherapy for Parkinson’s disease – patients’ priorities.