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

Abstract

BackgroundPhysical 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.ObjectiveThe purpose of this study was to examine patients’ perception of physical therapy during symptom progression using an internet assessment approach.MethodsA 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.ResultsForty-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).ConclusionsPhysical 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.

Patient-reported outcomes following primary total hip arthroplasty in Crowe type III or IV developmental dysplasia are comparable to those in Crowe type I: a case-control study of 96 hips with intermediate-term follow-up

“…This fact could artificially inflate the proportion of satisfied or unsatisfied patients. The response rates in this study were not high enough at 61% (23/38 cases); however, this proportion was similar to those reported in previous survey studies [19,29]. Third, the validity of the questionnaire used in this study had not been determined, and the presence of concurrent knee conditions at the time of the evaluation was overlooked.…”

Patient-reported outcomes following primary total hip arthroplasty in Crowe type Ⅲ or Ⅳ developmental dysplasia are comparable to those in Crowe type Ⅰ: a case-control study of 96 hips with intermediate-term follow-up

“…This fact could arti cially in ate the proportion of satis ed or unsatis ed patients. The response rates in this study were not high enough at 61% (23/38 cases); however, this proportion was similar to those reported in previous survey studies [Meyer R et al, 2018;Sieja A et al, 2019]. Third, the validity of the questionnaire used in this study had not been determined, and the presence of concurrent knee conditions at the time of the evaluation was overlooked.…”

Patient-reported outcomes following primary total hip arthroplasty in Crowe type Ⅲ or Ⅳ developmental dysplasia are comparable to those in Crowe type Ⅰ: a case-control study of 96 hips with intermediate-term follow-up

“…This fact could artificially inflate the proportion of satisfied or unsatisfied patients. The response rates of this study were not very high at 61% (23/38 cases), however those were almost the same as the previous survey studies [Meyer R et al, 2018;Sieja A et al, 2019]. Third, the validity evaluation of the questionnaire itself in this study had not been performed in the past, and the knee condition at the time of the evaluation had not been confirmed.…”