A Longitudinal Investigation of Hydrotherapy for Children and Adolescents with Muscular Dystrophy

Introduction: Muscular dystrophy (MD) is characterised by progressive muscle weakness and degeneration, that can lead to cardiovascular and respiratory complications, loss of ambulation, and a significant reduction in quality of life. There is no current cure for MD, however the use of hydrotherapy has been recommended in recent guidelines for the management and delay of disease progression. Despite these guidelines, there is a paucity of evidence regarding the effectiveness of hydrotherapy. The aim of the study was to investigate the effects of hydrotherapy on respiratory function, muscle strength, and wellbeing. Methodology: Two males with Duchenne MD received 45-minute hydrotherapy sessions once a week for 40 weeks. Hand-held dynamometry was used to assess dominant arm and leg strength. A respiratory pressure meter for static maximal inspiratory pressure (MIP) and maximal expiratory pressure (MEP), and 2-Dimentional ultrasonography for diaphragm thickness was used. The New Philanthropy Capital (NPC) Wellbeing measure (level 2) was used to assess wellbeing. These measures were taken at week 0, week 8-10, week 16 and week 40. Results: Out of six children recruited, three children completed the study, of which one was excluded from data analysis, due to having attended only 21.4% of available hydrotherapy sessions. Mean biceps strength decreased from baseline measures by 40.1 N in Participant 1 and 32.0 N in Participant 2 after 40 weeks of hydrotherapy. Mean quadriceps strength and MEP increased from baseline measure at each time point to week 40 in Participant 1 (33.0 N and 0.4 cm H2O, respectively) and Participant 2 (48.6 N and 18.0 cm H2O, respectively). In Participant 1 only, mean MIP and diaphragm thickness at week 40 was lower than baseline by 4.5 cm H2O and 0.01 cm, respectively, but were greater than baseline at week 8-10 and week 16. Wellbeing scores in Participant 1 decreased from baseline to week 40 by 3.0. In Participant 2 only, mean MIP, diaphragm thickness, and wellbeing increased from baseline to week 40 by 6.3 cm H2O, 0.10 cm, and 3.0 points, respectively. The rate of attendance in Participant 1 was 67.9 % and in Participant 2 was 89.3%. Adjoining: To address the poor recruitment, attendance, and participation rates in Study 1, a second study to investigate barriers and motivators that may affect participation in hydrotherapy for children and adolescents with MD was implemented. Methodology: Sixteen parents and/or carers with a child aged 5-17-years-old and diagnosed with MD, completed an online questionnaire surrounding barriers and motivations to participation in hydrotherapy. Results: Participation for hydrotherapy amongst children with MD was facilitated by parent-reported perceptions that hydrotherapy could slow down MD progression, decrease pain, and increase comfort, fun, relaxation, and independence. For parents, distance and a lack of time hindered their ability to bring their child to hydrotherapy sessions, while for children (as reported by their parents) their lack of self-esteem was the main barrier preventing them from participating. Conclusion: Study 1 provided useful insights into the potential contribution that the use of hydrotherapy could have for the maintenance on respiratory function, quadriceps strength, and wellbeing in children with MD. There was limited evidence supporting 40 weeks of hydrotherapy for the maintenance of function, but this was based on very limited sample size and no control group to support the results. The lack of standardisation was highlighted as a limitation across both Study 1 and 2, and a requirement of further investigation. However, the further understanding of barriers and motivators for MD from Study 2, provides an explanation for the findings of Study 1 and can be applied to future studies improve the implementation of interventions. Therefore, this thesis can serve as a template to better design future studies