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Perceived effectiveness and barriers to physical therapy services for families and children with Friedreich ataxia.

ABSTRACT: PURPOSE:To describe the frequency, type, and perceived effectiveness of physical therapy interventions for children with Friedreich ataxia (FA); identify barriers to therapy; and solicit advice from parents. METHOD:Parents of 30 children with FA participated in semistructured interviews. Qualitative and quantitative methods were used to analyze the data. RESULTS:Sixty-seven percent of children received direct physical therapy service. Stretching and strengthening exercises were used most frequently, and their perceived usefulness increased as the children aged. Seventy-three percent received home exercise programs; 9% implemented these consistently. External barriers included a lack of expert providers and limited reimbursement. Internal barriers included limited time and energy, lack of awareness of services, and children's preferences not to be treated differently. Parents advised therapists to become experts, advocates, and use approaches based on family and child preferences. CONCLUSIONS:Outcomes provide a starting point for developing further research, education, and effective interventions for children with FA.

SUBMITTER: Maring J

PROVIDER: S-EPMC3696476 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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Perceived effectiveness and barriers to physical therapy services for families and children with Friedreich ataxia.

Maring Joyce J Croarkin Earllaine E Morgan Sylvia S Plack Margaret M

Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association 20130101 3

<h4>Purpose</h4>To describe the frequency, type, and perceived effectiveness of physical therapy interventions for children with Friedreich ataxia (FA); identify barriers to therapy; and solicit advice from parents.<h4>Method</h4>Parents of 30 children with FA participated in semistructured interviews. Qualitative and quantitative methods were used to analyze the data.<h4>Results</h4>Sixty-seven percent of children received direct physical therapy service. Stretching and strengthening exercises ...[more]

PMID: 23685741

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Project description:IntroductionThe relevance of rehabilitation in progressive neurological disorders, such as Friedreich's Ataxia (FRDA), has yet to be convincingly proven. FRDA is characterized by ataxia, loss of gait, scoliosis, cardiomyopathy, dysarthria and dysphagia, with reduced life expectancy. The disease onset is usually in adolescence, leading to progressive disability. Omaveloxolone has been recently approved as the first pharmacological treatment for FRDA in adults and adolescents aged 16 years and older. Regarding non-pharmacological therapies, neurorehabilitation is a valuable aid in addressing the symptoms and in maintaining the residual functioning. We performed a prospective observational cohort study to evaluate the efficacy of inpatient rehabilitation (IR) for people with FRDA.MethodsA total of 42 individuals (29 adults and 13 children) with FRDA were recruited. There were 27 ambulant and 15 non-ambulant participants. The patients underwent IR of 3 and 4 weeks in children and adults, respectively. The IR treatment was designed to be applied within a multidisciplinary setting, so FRDA patients underwent, in addition to physiotherapy, also occupational therapy, practical manual activities and psychological support aiming to enhance transferable skills useful in the activities of daily living. The primary outcome was the Scale for the Assessment and Rating of Ataxia (SARA). Other measures were: Friedreich Ataxia Rating Scale (FARS) and Nine Hole Peg Test (NHPT). Furthermore, we used the 6 Minute Walk Test (6MWT), the Timed Up and Go (TUG) and the Berg Balance Scale (BBS) only on ambulant subjects. Outcomes were evaluated at baseline and at the end of the treatment.ResultsWe report that the IR significantly improves motor performance and ataxia symptoms in patients with FRDA. Our study shows significant functional improvement in all the outcome measures used, except for NHPT bilaterally. FARS and SARA scores post-IR are significatively reduced when compared (p < 0.001).DiscussionWe demonstrate that IR programs in FRDA can provide a meaningful clinical improvement in terms of outcome measures. These findings could be useful when approaching progressive neurological disorders.

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Perceived effectiveness and barriers to physical therapy services for families and children with Friedreich ataxia.

Publications

Perceived effectiveness and barriers to physical therapy services for families and children with Friedreich ataxia.

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