Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons with Early and Mid-Stage Amyotrophic Lateral Sclerosis—Protocol and Results from a Feasibility Study

Abstract

Respiratory failure, malnutrition, aspiration pneumonia, and dehydration are the precursors to mortality in ALS. Loss of natural communication is considered one of the worst aspects of ALS. This first study to test the feasibility of a music therapy protocol for bulbar and respiratory rehabilitation in ALS employs a mixed-methods case study series design with repeated measures. Newly diagnosed patients meeting the inclusion criteria were invited to participate, until the desired sample size (n = 8) was achieved. The protocol was delivered to participants in their homes twice weekly for six weeks. Individualised exercise sets for independent practice were provided. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation and personal impressions) were collected. Bulbar and respiratory changes were objectively measured. Results. A high recruitment rate (100%), a high retention rate (87.5%) and high mean adherence to treatment (95.4%) provide evidence for the feasibility of the study protocol. The treatment was well tolerated. Mean adherence to the suggested independent exercise routine was 53%. The outcome measurements to evaluate the therapy-induced change in bulbar and respiratory functions were defined. Findings suggest that the protocol is safe to use in early- and mid-stage ALS and that music therapy was beneficial for the participants’ bulbar and respiratory functions. Mean trends suggesting that these functions were sustained or improved during the treatment period were observed for most outcome parameters: Maximal Inspiratory Pressure, Maximal Expiratory Pressure, Peak Expiratory Flow, the Center for Neurologic Study—Bulbar Function Scale speech and swallowing subscales, Maximum Phonation Time, Maximum Repetition Rate—Alternating, Maximum Repetition Rate—Sequential, Jitter, Shimmer, NHR, Speaking rate, Speech–pause ratio, Pause frequency, hypernasality level, Time-to-Laryngeal Vestibule Closure, Maximum Pharyngeal Constriction Area, Peak Position of the Hyoid Bone, Total Pharyngeal Residue C24area. Conclusion. The suggested design and protocol are feasible for a larger study, with some modifications, including aerodynamic measure of nasalance, abbreviated voice sampling and psychological screening.

Psychosocial interventions for people with amyotrophic lateral sclerosis and motor neuron disease and their caregivers: a scoping review

“…Denmark, Iran, Japan, Russia, Spain, and Uruguay each published one study. In terms of study design, one group pre-post design [ 8 , 22 , 23 , 25 , 29 , 32 ] and RCT [ 7 , 9 , 19 , 24 , 35 , 38 ] were the most common with six studies, followed by five qualitative studies [ 6 , 10 , 18 , 30 , 31 ] and four quasi-experimental studies [ 5 , 28 , 34 , 39 ], and three each for mixed methods [ 33 , 36 , 40 ] and case studies [ 26 , 27 , 37 ].…”

“…Most of the studies involved less than 50 participants, two studies [ 5 , 38 ] 50–100 participants, one study [ 9 ] had over 100 participants. Eleven studies [ 5 , 19 , 22 , 24 – 27 , 34 , 35 , 37 , 39 ] collected data from people with ALS/MND, six studies [ 8 , 30 – 33 , 40 ] from family members, and ten studies [ 6 , 7 , 9 , 10 , 18 , 23 , 28 , 29 , 36 , 38 ] from both persons with ALS/MND and also family members.…”

“…Education-related interventions included programs such as providing information regarding disease [ 39 ], skill training [ 32 ], teaching coping skills and problem solving [ 33 ], and nutrition education and counseling [ 34 ]. Behavior therapy interventions encompassed programs like expressive disclosure exercise [ 24 ] and music therapy [ 19 , 22 , 36 ], while counseling interventions included dignity therapy [ 8 , 23 ] and supportive counseling [ 39 ]. Social support interventions included programs such as a mutual support group program [ 6 , 30 ], and psychotherapy interventions featured treatment such as hypnosis treatment [ 28 , 29 ], eye movement desensitization and reprocessing [ 37 ], and meditation [ 10 ].…”

“…The majority of participants reported little or no anxiety prior to the interventions, and therefore, little change was noted in any of the groups Kavanaugh et al (2020) [ 32 ] Skills training and support program N/A • Caregivers: Caregiving tasks & self-efficacy (MACA-YC18), Goal attainment/behavior (5-Likert), Well-being behaviors (4-Likert), Social support (developed for the study) • Participants reported significant increase in confidence in tasks, including communication systems and respiratory equipment Participants identified goal setting and creating behaviors to reach those goals Kleinbub et al (2015) [ 28 ] A hypnosis treatment and self-hypnosis training blank • Patients: anxiety and depression (HADS), QOL (ALSSQOL-R), physical function (ALSFRS-R) • Caregivers: anxiety and depression (HADS) • The statistical analyses revealed an improvement in psychological variables' scores immediately after the treatment. Amelioration in patients' and caregivers' anxiety as well as caregivers' depression, were found to persist at 3 and 6 months follow-ups • Treated patients decline in ALSFRS-r score was observed to be slower than that of control group's patients Kolomeytseva et al (2022) [ 36 ] Home-based music therapy N/A • Patients: Pulmonary function (pulmonary function tests: MIP, MEP, FVC, PEF), swallowing (CNS-BFS) • The music therapy was beneficial for the participants’ bulbar and respiratory functions Pagnini et al (2022) [ 38 ] An ALS-specific online Langerian mindfulness training program Wait-list control • Patients: QOL (ALSSQOL-R), anxiety and depression (HADS), physical function (SA-ALSFRS-R) • Caregivers: QOL (SF-36), caregiver burden (ZBI) • The experimental group reported higher levels of QOL, lower values of depression, anxiety, and negative emotions, compared to the controls • The caregivers from the mindfulness group reported lower scores of care burden, depression, and anxiety, with higher values of energy and emotional well-being over time Palmieri et al (2012) [ 29 ] Hypnosis intervention N/A • Patients: anxiety and depression (HADS), QOL (ALSSQOL-R, ALSAQ-5) • Caregivers: anxiety and depression (HADS) • Significant reduction of anxiety both for patients and caregivers, and significant reduction of depression for ...…”

Detection of Face Emotion and Music Recommendation System using Machine Learning

“…The jaw is also opened. When treating depression, music therapy is seen as a beneficial addition to regular care [5]. There is a wide range of music that is available, along with a wide range of tempos, amplitudes, and moods [6].…”