Improving quality of life in patients with Huntington’s disease through music therapy: A qualitative explorative study using focus group discussions

Abstract

ABSTRACTHuntington’s disease (HD) is a progressive, neurodegenerative, autosomal dominant disease, characterized by motor disturbances, behavioral and psychological symptoms and cognitive decline. These characteristics often result in loss of expressive and communicative skills, especially in the advanced stage of the disease, frequently giving rise to behavioral problems such as anxiety, irritability and apathy. Music therapy is potentially a good non-pharmacological intervention to improve communication skills and thus possibly reduce behavioral problems, leading to a better quality of life (QoL) overall. As there is little knowledge on how music therapy may contribute to improve the QoL in HD, a qualitative research was conducted to gain insight: a focus group study was performed, following the guidelines of naturalistic inquiry and grounded theory. In three open-structured group discussions, participants (six HD professionals with different experience with and knowledge about music therapy) were asked to reflect on what defines QoL in patients with HD and on the potential role of music therapy for patients with HD. The results show that, according to the focus group participants, psychosocial aspects seem to be the most important aspects which contribute to improve QoL in patients with HD, with sense of security, confidence and structure being the qualifications most mentioned. Autonomy and self-esteem are other important QoL factors. The participants stated that the stage of the disease and the living conditions of the patient are crucial. Poor insight, unawareness and denial, all due to cognitive decline, mean that it is extremely difficult for patients to reflect on their own QoL. As the ability to communicate and express oneself deteriorates over time, music therapy could play an important role in the treatment of patients with HD in all phases of the disease. By providing an additional means of communication, thus enabling the patient to express emotions, music could be used as a mood indicator to determine in which state of mind the patient is. This article describes six HD clinicians’ perception of QoL for patients with HD and the potential role music therapy can play in improving the QoL of patients with HD using focus group discussions. These insights were used to inform an empirical trial looking at the effects of music therapy on improving the QoL of patients with HD.