“Music therapy can be a useful form of treatment with multiple benefits for children with conditions such as MPS III or similar conditions,” according to “Music therapy and Sanfilippo syndrome: an analysis of psychological and physiological variables of three case studies” published November 2021 in the Orphanet Journal of Rare Diseases. The study article also calls for further research in this very under-researched area.
How can music therapy benefit children with Sanfilippo?
Without a cure for Sanfilippo Syndrome, multidisciplinary support treatment is important in order to provide the best possible quality of life and relief from physical and psychological symptoms, pointed out the article. The article outlined that these can include pharmacological, nutritional support, or psychological interventions; and non-pharmacological alternative therapies such as music therapy. All with the goal of improving the children’s quality of life.
While there are no studies regarding music therapy intervention applies to rare disease, this study used the theoretical framework and basis for the use of music therapy in children with autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), and dementia given their shared characteristic symptoms with Sanfilippo patients.
The study’s review of the literature on music therapy applied to people with ASD found statistically- significant improvements in 11 out of 18 studies. Additionally, studies of children with ASD found statistically-significant differences in non-verbal communication and behavior among participants who had been diagnosed with autism, compared to receiving no musical therapy at all.
How the study was structured
Because of the difficulty in collecting data from children with cognitive defects and/or developmental delays, the study sought additional sources of information, especially caregivers’ perceptions and reports.
The study’s psychological variables were evaluated by ad hoc observations, empirical measurements, and parent perceptions.
This study was structured as weekly 45-minute, one-to-one sessions with three structured parts.
Psychological and physiological data was collected before music therapy began, and then again afterward. Additionally, parents participated in researcher-led interviews after completion of the three-month observation process to assess long-term impact.
What the study found
The study thoroughly detailed the experiences of the three children with Sanfilippo and how music therapy impacted their physical, communication, socio-emotional, and cognitive skills; empirical data; and their caregiver’s perception of their well being.
All of the children showed an improvement in their physical, communication, social, emotional and cognitive levels after the therapy sessions. Some children’s results were more pronounced than others.
Additionally, all of the parents stated, to some extent, that they believed the music therapy benefited their child, especially at a social-emotional level.
“The results of this study provide preliminary information and indicate positive changes in both psychological and physiological variables after having received music therapy sessions, concludes the study. “This leads to the conclusion that this treatment is a promising practice for improving quality of life.”
The researchers hope this study can serve as a basis for future research, further building what is understood about the benefits of music therapy for children with Sanfilippo Syndrome, other MPS disorders, and rare diseases in general.