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

ABSTRACT

Huntington’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.

KEYWORDS:

• Huntington’s disease
• music therapy
• quality of life
• focus group

Acknowledgments

We would like to thank the six participants, the monitor and the assistant who contributed time and energy to this study and the Atlant Care Group, Apeldoorn, for facilitating the three meetings. Also, we thank Brenda Vollers and Lori Blair Keeton for proofreading and editing the language of the manuscript. This research is financed by the Jacques and Gloria Gossweiler Foundation (JGGF), Switzerland. The funding source has no role in the study design, nor has any role during its execution, analyses, interpretation of the data and writing of the manuscript or in the decision to submit the manuscript for publication.

Additional information

Funding

This research is financed by the Jacques and Gloria Gossweiler Foundation (JGGF), Switzerland.

Notes on contributors

Monique van Bruggen-Rufi

Monique van Bruggen-Rufi, MA, is a neurologic music therapist-fellow. She is currently working on her PhD research on music therapy with Huntington’s Disease at the Neurology department of the Leiden University Medical Center in Leiden, The Netherlands. She also works as a lecturer in music therapy and guitar skills at the ArtEZ School of Music in Enschede, The Netherlands, and as a researcher at Atlant Care Group in Apeldoorn, The Netherlands. Her main area of expertise is music therapy in neurodegenerative diseases, such as Huntington, Parkinson, and dementia.

Annemieke Vink

Annemieke Vink, PhD, is a psychologist and received her PhD in Medical Sciences at the University of Groningen on her study examining the effect of music therapy with demented elderly people. She works as a lecturer in theory of music therapy at the ArtEZ School of Music in Enschede, The Netherlands. She is also a core team member and lecturer on the Master of Arts Therapies Course (Zuyd University) and a researcher at KenVaK, the joint knowledge network of Zuyd University, the HU University of Applied Sciences Utrecht, ArtEZ Institute of the Arts and Stenden University, all in The Netherlands. Her main area of expertise is the effect of music therapy on people with dementia and music psychology.

Wilco Achterberg

Wilco Achterberg, PhD, is a physician and a professor of institutional care and elderly care medicine at the department of Public Health and primary care at the Leiden University Medical Center in Leiden, The Netherlands. He is also elderly care physician at Topaz Huntington’s Disease Expertise Center in Katwijk, The Netherlands. His research focus is on the most vulnerable persons, most of whom live in nursing homes, and is centered around three themes: 1) pain in dementia, 2) geriatric rehabilitation, and 3) care for advanced Huntington’s disease.

Raymund Roos

Raymund Roos, PhD, is a physician and professor and head of the Neurology department at the Leiden University Medical Center in Leiden, The Netherlands. His main expertise is movement disorders with the focus on Huntington’s disease. He is supervisor of more than 20 HD PhD theses out of more than 50 PhD students. He has over 200 international publications on HD as (co)author out of 400 and author of several book chapters.