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

References

• A’Campo, L. E. I. (2012). A patient and caregiver education program in Parkinson’s disease, Huntington’s disease, and other chronic diseases ( doctoral thesis). Leiden: Department of Neurology, Faculty of Medicine, Leiden University Medical Center, Leiden University. ISBN: 978-90-5335-542-8.
   Google Scholar
• Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48, 977–988. doi:10.1016/S0277-9536(98)00411-0
   PubMed Web of Science ®Google Scholar
• Bakas, T., McLennon, S. M., Carpenter, J. S., Buelow, J. M., Otte, J. L., Hanna, K. M., Welch, J. L. (2012). Systematic review of health-related quality of life models. Health and Quality of Life Outcomes, 10, 134. doi:10.1186/1477-7525-10-134
   PubMed Web of Science ®Google Scholar
• Bates, G., Tabrizi, S., & Jones, L., (2014). Huntington’s disease (4th ed.). New York: Oxford University Press.
   Google Scholar
• Brotons, M. (2000). An overview of the music therapy literature relating to elderly people. In D. Aldridge (Ed.), Music therapy and dementia care (pp. 33–62). London: Jessica Kingsley.
   Google Scholar
• Copi, I. M., Cohen, C., & McMahon, K. (2015). Introduction to logic, 14th eds. London: Pearson Education.
   Google Scholar
• Daveson, B. (2007). Findings of an audit of music therapy referrals in a specialist in-patient setting for 16 patients with advancing Huntington’s disease. Australian Journal of Music Therapy, 18, 2–19.
   Google Scholar
• Davis, G., & Magee, W. (2001). Clinical improvisation within neurological disease: Exploring the effect of structured clinical improvisation on the expressive and interactive responses of a patient with Huntington’s disease. British Journal of Music Therapy, 15(2), 51–60. doi:10.1177/135945750101500203
   Google Scholar
• Ferrans, C. E. (2005). Definitions and conceptual models of quality of life. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes assessment in cancer (pp. 14–30). Cambridge: Cambridge University Press.
   Google Scholar
• Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory. Chicago: Aldine.
   Google Scholar
• Hamilton, J. M., Salmon, D. P., Corey-Bloom, J., Gamst, A., Paulsen, J. S., Jerkins, S., … Peavy, G. (2003). Behavioural abnormalities contribute to functional decline in Huntington’s disease. Journal Neurologic Neurosurgery Psychiatry, 74(1), 120–122. doi:10.1136/jnnp.74.1.120
   PubMed Web of Science ®Google Scholar
• Hartelius, L., Jonsson, M., Rickeberg, A., & Laakso, K. (2010). Communication and Huntington’s disease: Qualitative interviews and focus groups with persons with Huntington’s disease, family members, and carers. International Journal of Language & Communication Disorders, 45(3), 381–393. doi:10.3109/13682820903105145
   PubMed Web of Science ®Google Scholar
• Helder, D. I., Kaptein, A. A., van Kempen, G. M. J., van Houwelingen, J. C., & Roos, R. A. C. (2001). Impact of Huntington’s disease on quality of life. Movement Disorders, 16(2), 325–330. doi:10.1002/mds.1056
   PubMed Web of Science ®Google Scholar
• Ho, A. K., Gilbert, A. S., Mason, S. L., Goodman, A. O., & Barker, R. A. (2009). Health-related quality of life in Huntington’s disease: Which factors matter most? Movement Disorders, 24(4), 574–578. doi:10.1002/mds.v24:4
   PubMed Web of Science ®Google Scholar
• Ho, A. K., & Hocaoglu, M. B. (2011). Impact of Huntington’s across the entire disease spectrum: The phases and stages of disease from the patient perspective. Clinical Genetics, 80, 235–239. doi:10.1111/j.1399-0004.2011.01748.x
   PubMed Web of Science ®Google Scholar
• Ho, A. K., Robbins, A. O. G., & Barker, R. A. (2006). Huntington’s disease patients have selective problems with insight. Movement Disorders, 21(3), 385–389. doi:10.1002/mds.20739
   PubMed Web of Science ®Google Scholar
• Ho, A. K., Robbins, A. O. G., Walters, D. J., Kaptoge, S., Sahakian, B. J., & Barker, R. A. (2004). Health-related quality of life in Huntington’s disease: A comparison of two generic instruments, SF-36 and SIP. Movement Disorders, 19(11.), 1341–1348. doi:10.1002/mds.20208
   PubMed Web of Science ®Google Scholar
• Hocaoglu, M.B, Gaffan, E.A, & Ho, A.K. (2012). The huntington's disease health-related quality of life questionnaire (hdqol): a disease-specific measure of health-related quality of life. Clinical Genetics, 81(2), 117-122. doi: 10.1111/j.1399-0004.2011.01823.x
   PubMed Web of Science ®Google Scholar
• Huntington Study Group (Kieburtz K, primary author). (1996). The Unified Huntington’s Disease Rating Scale: Reliability and consistency. Movement Disorders, 11, 136–142. doi:10.1002/mds.870110204
   PubMed Web of Science ®Google Scholar
• Juslin, P. N., & Sloboda, J. A. (Eds.). (2010). Handbook of music and emotion: Theory, research, applications. Oxford: Oxford University Press.
   Google Scholar
• Kingma, E. M., van Duijn, E., Timman, R., van der Mast, R. C., & Roos, R. A. C. (2008). Behavioural problems in Huntington´s disease using the Problem Behaviours Assessment. General Hospital Psychiatry, 30, 155–161. doi:10.1016/j.genhosppsych.2007.11.005
   PubMed Web of Science ®Google Scholar
• Krueger, R. A. (1997). Moderating focus groups. Thousand Oaks, CA: Sage.
   Google Scholar
• Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage.
   Google Scholar
• Liou, S. (2010). Huntington’s outreach project for education at Stanford (HOPES). Retrieved from http://web.stanford.edu/group/hopes/
   Google Scholar
• McCusker, E., & Loy, C. T. (2014). The many facets of unawareness in Huntington disease. Tremor and Other Hyperkinetic Movements, 4. doi:10.7916/D8FJ2FD3
   PubMedGoogle Scholar
• McFerran, K, Lee, J.Y, Steele, M, & Bialocerkowski, A. (2009). A descriptive review of the literature (1990-2006) addressing music therapy with people who have disabilities. Musica Humana, 1(1), 45-80.
   Google Scholar
• Morgan, D. L. (1998). The focus group guidebook. Thousand Oaks, CA: Sage.
   Google Scholar
• Nance, M., Paulsen, J. S., Rosenblatt, A., & Wheelock, V. (2011). A physician’s guide to the management of Huntington’s disease (3rd ed.). Huntington’s Disease Society of America.
   Google Scholar
• O’Kelly, J., & Bodak, R. (2016). Development of the Music Therapy Assessment Tool for Advanced Huntington’s Disease: A pilot validation study. Journal of Music Therapy, 53(3), 232–256.
   PubMed Web of Science ®Google Scholar
• Pacchetti, C., Mancini, F., Agilieri, R., Fundaro, C., Martignoni, E., & Nappi, G. (2000). Active music therapy in Parkinson’s disease: An integrative method for motor and emotional rehabilitation. Psychosomatic Medicine, 62, 386–393. doi:10.1097/00006842-200005000-00012
   PubMed Web of Science ®Google Scholar
• Papoutsi, M., Labuschagne, I., Tabrizi, S. J., & Stout, J. C. (2014). The cognitive burden in Huntington’s disease: Pathology, phenotype, and mechanisms of compensation. Movement Disorders, 29(5), 673–683. doi:10.1002/mds.v29.5
   PubMed Web of Science ®Google Scholar
• Powell, R. A., & Single, H. M. (1996). Focus groups. International Journal for Quality in Health Care, 8(5), 499–504. doi:10.1093/intqhc/8.5.499. Retrieved from http://intqhc.oxfordjournals.org/content/8/5/499
   PubMed Web of Science ®Google Scholar
• Raglio, A. (2015). Music therapy interventions in Parkinson’s disease: The state-of-the-art. Frontiers in Neurology, 6, 185. doi:10.3389/fneur.2015.00185
   PubMed Web of Science ®Google Scholar
• Ready, R. E., Mathews, M., Leserman, A., & Paulsen, J. S. (2008). Patient and caregiver quality of life in Huntington’s disease. Movement Disorders, 23(5), 721–726. doi:10.1002/mds.21920
   PubMed Web of Science ®Google Scholar
• Roos, R. A. C. (2010). Huntington’s disease: A clinical review. Orphanet Journal of Rare Diseases, 5, 40. doi:10.1186/1750-1172-5-40
   PubMed Web of Science ®Google Scholar
• Sherratt, K., Thornton, A., & Hatton, C. (2004). Music interventions for people with dementia: A review of the literature. Aging & Mental Health, 8(1), 3–12. doi:10.1080/13607860310001613275
   PubMed Web of Science ®Google Scholar
• Sitek, F. J., Thompson, J. C., Craufurd, D., & Snowden, J. S. (2014). Unawareness of deficits in Huntington’s disease. Journal of Huntington’s Diseases, 3(2), 125–135. doi:10.3233/JHD-140109
   PubMedGoogle Scholar
• Timman, R., Claus, H., Slingerland, H., van der Schalk, M., Demeulenaere, S., Roos, R. A. C., & Tibben, A. (2005). Nature and development of Huntington disease in a nursing home population: The Behavior Observation Scale Huntington (BOSH). Cognitive and Behavioral Neurology, 18(4), 215–222. doi:10.1097/01.wnn.0000191980.62357.d4
   PubMed Web of Science ®Google Scholar
• van Beek, S. (2012). Enhancing quality of life through singing: a music therapy study into Huntington’s disease (Unpublished master’s thesis). New Zealand School of Music, Wellington. Retrieved from http://mro.massey.ac.nz/handle/10179/4160
   Google Scholar
• van Bruggen-Rufi, C. H. M. (2009). Individuele muziektherapie voor cliënten die lijden aan de ziekte van Huntington ter bevordering en stimulering van communicatie en zelfexpressie [Individual music therapy for patients with Huntington’s disease on improving and stimulating communication and self-expression]. Utrecht: Product-omschrijving Trimbos-Instituut. Retrieved from http://www.vaktherapie.nl/userfiles/files/Producten/2010-07-07_Individuele_MT_voor_clienten_die_lijden_aan_ziekte_Huntington.pdf
   Google Scholar
• van Bruggen-Rufi, C. H. M. (2010). Multi- and interdisciplinary collaboration between the music therapist and other professionals in the care for patients with Huntington’s disease ( Unpublished master’s thesis), Zuyd University, Heerlen, The Netherlands).
   Google Scholar
• van Bruggen-Rufi, C. H. M., & Roos, R. A. C. (2015). The effect of music therapy for patients with Huntington’s disease: A systematic literature review. Journal of Literature and Art Studies, 5(1), 30–40. doi:10.17265/2159-5836/2015.01.005m
   Google Scholar
• van Bruggen-Rufi, C. H. M., Vink, A., Achterberg, W. P., & Roos, A. C. (2016). Music therapy in Huntington’s disease: A protocol for a multi-center randomized controlled trial. BMC Psychology, 4, 38. doi:10.1186/s40359-016-z
   PubMedGoogle Scholar
• van Duijn, E., Kingma, E. M., & van der Mast, R. C. (2007). Psychopathology in verified Huntington’s disease gene carriers. The Journal of Neuropsychiatry and Clinical Neurosciences, 19, 441–448. doi:10.1176/jnp.2007.19.4.441
   PubMed Web of Science ®Google Scholar
• Vervoort, E. L., & van Zuuren, F. J. (Eds.). (2009). De ziekte van Huntington en verwante erfelijke neuropsychiatrische aandoeningen [Huntington’s disease and related hereditary diseases]. Assen: Koninklijke Van Gorcum BV.
   Google Scholar
• Vink, A. C., (2013), Music therapy for dementia: The effect of music therapy in reducing behavioural problems in elderly people with dementia (Unpublished dissertation). University of Groningen, The Netherlands. Retrieved from http://dissertations.ub.rug.nl/faculties/medicine/2013/a.c.vink/
   Google Scholar
• Vink, A. C., Bruinsma, M. S., & Scholten, R. J. S. (2011). Music therapy for people with dementia (updated Cochrane Review). In The Cochrane Library. Chichester, UK: John Wiley & Sons, ltd.
   Google Scholar
• Vink, A. C., Zuidersma, M., Boersma, F., de Jonge, P., Zuidema, S. U., & Slaets, J. P. (2013). The effect of music therapy compared with general recreational activities in reducing agitation in people with dementia: A randomised controlled trial. International Journal of Geriatric Psychiatry, 28(10), 1031–1038. doi:10.1002/gps.3924
   PubMed Web of Science ®Google Scholar
• World Health Organization (1997). Measuring quality of life. Retrieved from http://www.who.int/mental_health/media/68.pdf
   Google Scholar
• World Health Organization (2002). Towards a common language for functioning, disability and health (ICF). Retrieved from http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf
   Google Scholar
• Youssov, K., Dolbeau, G., Maison, P., Boissé, M. F., Cleret de Langavant, L., Roos, R. A. C., & Bachoud-Lévi, A. C. (2013). Unified Huntington’s disease rating scale for advanced patients validation and follow-up study. Movement Disorders, 28(12), 171–1723.
   Web of Science ®Google Scholar