Introduction Since there is no cure for HD all treatment is directed to improve quality of life. One barely recognised non-drug therapy is music therapy. A focus group was installed with the purpose to generate research questions, topics and hypotheses and, most important, to discuss the research design concerning an upcoming trial exploring the effects of music therapy on improving the quality of life of patients suffering from Huntington's Disease. A Focus groups is a qualitative research method using guided group discussion to generate a rich understanding of participants' experiences and beliefs. Quality of Life, disturbing factors, study design and best practice interventions were the most important topics the participants discussed about.
Method The focus group consisted of a neurologist, a neuropsychologist, an elderly care physician, a physiotherapist and two music therapists. All members are well experienced and practicing in different specialised Huntington Care Units throughout The Netherlands. In total three meetings of 2-h were held. Questions like what is quality of life, what factor matter most, which role could music therapy play to improve the QoL, were discussed. After getting these answers clear, next the disturbing factors, measurement tools and research design were discussed.
Preliminary results and Conclusion The preliminary findings indicate that psychosocial well-being matters most. Also, not only the patient, but also the person closest to him or her should benefit from the music therapy sessions, and share the experience. Members of the focus group recognise a potential role for the music therapist to improve QoL, well worth researching. All the advices and thoughts will be reflected in the definite research design. The most appropriate design seems to be a multicenter randomised or clinical controlled trial. Three nursing home facilities, all specialised in HD, have already been contacted to participate. The measurement-tool most likely to be used in this study will be the recently published “Huntington's Disease Quality of Life” Questionnaire (Ho et al, 2009).
- music therapy
- quality of life
- Huntingtons disease