A pilot study of therapeutic massage for people with Parkinson's disease: the added value of user involvement

OBJECTIVE: To carry out a pilot study, with particular attention to adequacy of outcome measures. DESIGN: Observational study and user participation. SETTING AND PARTICIPANTS: A local user group selected seven participants with a wide range of illness severity. INTERVENTION: A course of eight 1hr sessions of deep whole body (therapeutic) massage over 8 weeks. OUTCOME MEASURES: The Parkinson's Disease Questionnaire (PDQ-39), the Measure Yourself Medical Outcome Profile (MYMOP), and the Medication Change Questionnaire (MCQ). Semi-structured interviews, before and after the intervention. RESULTS: In addition to enjoying the massage, individuals showed improvement in self-confidence, well-being, walking and activities of daily living. There was good agreement between data from the outcome questionnaires, interviews and clinical notes. User involvement highlighted issues that would otherwise have been ignored. CONCLUSIONS: The study confirms the benefits of involving users in the research process and makes recommendations concerning the design of any future randomised trial.