Research questions:1. Does music therapy improve the expressive and communicative skills of patients with HD due to (specific) music therapy treatment? 2. Does music therapy change problem behavior of patients with HD?
ID
Source
Brief title
Condition
- Chromosomal abnormalities, gene alterations and gene variants
- Movement disorders (incl parkinsonism)
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Outcome measures
Behaviour Observation Scale Huntington (BOSH) contains 32 items in 3 subscales:
1) activities of daily living (ADL), 2) social-cognitive functioning, and 3)
mental rigidity and aggression. Expressive- and communicative skills are also
measured.
The Problem Behaviours Assesment-short version is a 5-point rating scale, using
the scores 0 (absent) to 4 (severe). Besides that, there is a subscale for
severity and one for frequency. The PBA-s is a 10-item semi-structured
interview and assesses behavioural problems in the 4 weeks prior to the
interview.
Secondary outcome
n.a.
Background summary
Rationale
Huntington*s Disease (HD) is a progressive, neurodegenerative, autosomal
dominant disease characterized by motor - and psychiatric disturbances, and
cognitive decline. In the attempt to meet the individual needs, the challenge
is to develop effective therapeutic strategies. Since there is no cure for the
disease, all treatment is aimed at improving quality of life [1].
Cognitive and behavioral changes are the most debilitating aspects of the
disease and place the greatest burden on the patient as well as their families
and caregivers [2]. This often warrants admission to a nursing home.
The cognitive disorders in HD effect a broad variety of skills, including
learning and memory, perceptual skills, executive efficiency and language [2].
Communication, the transfer of information from one person to another, requires
a complex integration of thought, muscle control, and breathing. HD can impair
all three of these functions. Even in later stages of the disease, language
comprehension may be preserved when the ability to speak is significantly
diminished. In other words, even if a person with HD might not be able to
express him-/herself any longer, it is likely that he/she can still understand
what is being said. The difficulty in people with HD is the inability to
organize language. In practice this loss of communication results in behavior
problems [2].
Study objective
Research questions:
1. Does music therapy improve the expressive and communicative skills of
patients with HD due to (specific) music therapy treatment?
2. Does music therapy change problem behavior of patients with HD?
Study design
A single-blind randomized controlled intervention trial (RCT) is proposed to
test the propositions and hypotheses. Sixty (60) Patients (see sample size
calculation below) will be randomised using centre-stratified block-permuted
randomization.Two random groups will be created.The experimental group will be
offered a music therapy program, and the control group will participate in
regular recreational day activities. Besides that, both groups will receive
regular treatment (standard care, treatment as usual. Participants from both
the experimental and the control group are not allowed to receive music therapy
outside the study.
Intervention
Intervention
While participating in the study, all participants (in both the music therapy
group and the control group) continue to receive treatment as usual.
Patients will participate in group interventions with a minimum of three and a
maximum of five participants. A total of 16 sessions once a week will be
offered to both groups.
Each music therapy intervention will last for 45 minutes. The intervention will
be provided at the same time of the same day of the week by a formally trained
music therapist with at least 3 years working experience. The music therapy
intervention will be standardized without limiting the music therapists in
their interactions. However, the music intervention will be (partly)
protocolized. Each session starts with the same welcome song/musical piece and
ends with the same farewell song/musical piece. In doing so, the participants
are fully aware of the start and the end of each session. In between these two
songs/musical pieces the music therapist adjusts the level of each intervention
to each individual*s capacities. After the welcome song the music therapy
sessions may be varied in that the music experiences can range from listening
to music to playing or singing songs to free improvisation [9]. The music
therapist has the liberty to determine what works best at that very moment for
that specific patient. The participants will listen to music selected, sung or
played by the therapist. Active participation in music activities by singing,
dancing or playing a music instrument will be stimulated as much as possible.
The music will be selected by the music therapist to incite expressive and
communication skills and to reduce agitation, based on musical parameters, such
as rhythm, melody, harmony, dynamics, timbre. After each song/musical
intervention the therapist will stimulate the participants to reflect verbally
on the music.
The basic principle of the intervention is to encourage and engage clients in
expressive musical interaction. The role of the therapist is to use musical
parameters and interventions combined with reflective discussion. The degree of
verbal reflection may vary. The therapeutic process is based on the mutual
construction of meaning of emerging thoughts, images, emotional content and
expressive qualities that often originate from the musical experience [10].
In the control group, recreational day activities will be offered under the
exact same circumstances as the music therapy sessions; once weekly with a
total of 16 sessions, lasting 45 minutes. The activities vary from reading the
newspaper, cooking activities, arts-and-crafts-activities/handcraft-activities,
puzzle games. Music activities such as singing along or watching a music-video
is not allowed during these activities. These activities will be provided by
trained recreational therapists.
Both music therapy and general activities will be provided in separate rooms,
away from the ward. All participants are allowed to leave the intervention at
all times.
Study burden and risks
n.a.
Albinusdreef 2
Leiden 2333 ZA
NL
Albinusdreef 2
Leiden 2333 ZA
NL
Listed location countries
Age
Inclusion criteria
- Age older than 18 years
- Clinically and genetically confirmed Huntington*s Disease (CAG * 36 repeats)
- Total Functional Capacity (TFC) of <7
- Have not received music therapy in the past 3 months
Exclusion criteria
- Patients who suffer from other neurological disorders
- Patients with poor comprehension of the Dutch language.
Design
Recruitment
metc-ldd@lumc.nl
metc-ldd@lumc.nl
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
Register | ID |
---|---|
CCMO | NL48029.058.14 |