Patient-Reported Outcome of Physical Therapy in Amyotrophic Lateral Sclerosis: Observational Online Study.

Robert Meyer, Susanne Spittel, Laura Steinfurth, Andreas Funke, Dagmar Kettemann, Christoph Münch, Thomas Meyer, André Maier

Journal: JMIR rehabilitation and assistive technologies 2018;5(2):e10099

PMID: 30425026

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Plain Language Summary

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease. The disease is characterized by a loss of motor neurons resulting in progressive motor deficits and paralysis of the muscles that control limb movement, swallowing, and breathing. The aim of the study was to evaluate the frequency and duration of physical therapy sessions among ALS patients, determine the most bothersome motor symptoms, and identify recommendation levels for physical therapy. The study was a prospective, longitudinal, observational study that recruited a consecutive cohort of participants. The mean age of all participants at baseline was 59.2 years with a relatively long disease duration of 27 months. Results did not show a significant correlation between the recommendation of physical therapy and the extent (duration and frequency) of its application. There was no evidence that decline in well-being, motor function, or levels of activity significantly degrade the overall recommendation of physical therapy. Authors conclude that palliative (relieving pain without dealing with the cause of the condition) and multidisciplinary approaches should be encouraged during the education, training, and qualification of physical therapists to implement the changing perceptions of physical therapy.

Abstract

BACKGROUND

Physical therapy is an essential component of multidisciplinary treatment in amyotrophic lateral sclerosis (ALS). However, the meaning of physical therapy beside preservation of muscular strength and functional maintenance is not fully understood.

OBJECTIVE

The purpose of this study was to examine patients' perception of physical therapy during symptom progression using an internet assessment approach.

METHODS

A prospective, longitudinal, observational study was performed. Recruitment took place in an ALS center in Berlin, Germany. Online self-assessment was established on a case management platform over 6 months. Participants self-assessed the progression of the disease with the ALS Functional Rating Scale-Revised (ALSFRS-R) and tracked the efficacy of targeted physical therapy using Measure Yourself Medical Outcome Profile (MYMOP). We used the net promoter score (NPS) to inquire into recommendation levels of physical therapy.

RESULTS

Forty-five participants with ALS were included in the study. Twenty-seven (60.0%) started the online assessment. The mean duration of physical therapy sessions per week was 142.7 minutes (SD 60.4) with a mean frequency of 2.9 (SD 1.2) per week. As defined by MYMOP input, the most concerning symptoms were reported in the legs (62.2%), arms (31.1%), and less frequently in the torso (6.7%). As expected for a progressive disease, there was a functional decline of 3 points in the ALSFRS-R at the end of the observation period (n=20). Furthermore, the MYMOP showed a significant loss of 0.8 in the composite score, 0.9 in the activity score and 0.8 in the targeted symptom. In spite of functional decline, the recommendation for physical therapy jumped from a baseline value of 20 NPS points to a very high 50 points at the end of study (P=.05).

CONCLUSIONS

Physical therapy is perceived as an important treatment method by patients with ALS. Despite functional deterioration, patients are satisfied with physical therapy and recommend this intervention. The results also underline how the meaning of physical therapy changes throughout the disease. Physical therapy in ALS has to be regarded as a supportive and palliative health care intervention beyond functional outcome parameters.

©Robert Meyer, Susanne Spittel, Laura Steinfurth, Andreas Funke, Dagmar Kettemann, Christoph Münch, Thomas Meyer, André Maier. Originally published in JMIR Rehabilitation and Assistive Technology (http://rehab.jmir.org), 12.11.2018.

Address: Center for ALS and other Motor Neuron Disorders, Department of Neurology, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.; Center for ALS and other Motor Neuron Disorders, Department of Neurology, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.; Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.; Ambulanzpartner Soziotechnologie APST GmbH, Berlin, Germany.

DOI: 10.2196/10099