A new peripheral neuropathy activities measure, the Overall Neuropathy Limitations Scale (ONLS), was derived by modifying the Overall Disability Sum Score (ODSS) slightly. Its inter-rater reliability was found to be high and its correlation with the ODSS (r = 0.97), 36-item Short Form Questionnaire Physical Component Summary Score, and participation and impairment measures was significant. Acceptable responsiveness (standardised response mean 0.76) was shown by the ONLS. The results obtained from the questionnaire agreed closely with those obtained from observation of the tasks on the ONLS, but were not equivalent. The simplicity of the ODSS is shared by the ONLS, but the ONLS has better content validity and less ceiling effect, which may make it more useful for clinical practice and research.T he Overall Disability Sum Score (ODSS) was the first scale designed to assess the limitations of patients with immune-mediated peripheral neuropathies.
1It was derived from the Guy's Neurological Disability Scale, 2 a scale that was developed for assessing disability in patients with multiple sclerosis. The ODSS focuses on upper and lower limb functions, and consists of a checklist for interviewing patients. It is scored from 0 to 5 on the upper limb section and from 0 to 7 on the lower limb section. A score of 0 indicates no limitations (the ceiling of the scale) and a score of 5 or 7 indicates no purposeful movement.The ODSS showed intrarater and inter-rater reliability, responsiveness and construct validity in people with GuillainBarré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and paraprotein-associated demyelinating neuropathy.1 3 It has been successfully used to assess disability in clinical trials and investigations. The published description of the ODSS, however, does not interrogate patients on difficulties with climbing stairs or running. To reduce a possible ceiling effect, we have modified the ODSS slightly to include climbing stairs and running. Specifically, the ODSS item ''Does the patient have difficulty walking?'' has been supplemented with ''Does the patient have difficulty running or climbing stairs?'' on the new measure, the Overall Neuropathy Limitations Scale (ONLS; appendix). Therefore, to score 0 (indicating no limitations) on the lower limb section of the ONLS, the patient must now have no difficulty running or climbing stairs, in addition to walking. The remaining scoring criteria are not different from those in the ODSS.We have refined the instructions (available online at http:// www.jnnp.bmjjournals.com/supplemental) for administering the scale. We also investigated whether the ONLS could be used as an observed measure by clinicians watching patients perform the tasks outlined on the ONLS. The changes to the scale, although minor, and its use in a wider range of peripheral neuropathies, required a renewed clinimetric evaluation, which we present here.
METHODS PatientsWith permission from our local ethics committee, we filmed 35 patients performing the task...
There is insufficient evidence to support the use of exercise in the management of chronic disablement in people with inflammatory peripheral neuropathy. Therefore, our study aimed to determine the feasibility and effectiveness of a physiotherapist prescribed community based exercise programme for reducing chronic disablement in patients with stable motor neuropathy. We assessed the effects of a 12 week unsupervised, community based strengthening, aerobic and functional exercise programme on activity limitation and other measures of functioning in 16 people with stable motor neuropathy and 10 healthy control subjects. Fourteen of 16 patients and 8 out of 10 healthy control subjects completed the study and exercised safely in the community with no adverse events. Significant improvements were seen in all measures of activity limitation and in wider measures of health including anxiety, depression and fatigue in the patient group. Improvements were sustained at six months after completion of the exercise programme, except for depression. Ten patients continued to exercise regularly at six months. These findings demonstrate that individually prescribed community based exercise is feasible and acceptable for people with stable motor neuropathy and participation in exercise may be successful in reducing chronic disablement. Future randomised controlled trials are needed to examine the efficacy of this complex community based intervention.
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