A modified peripheral neuropathy scale: the Overall Neuropathy Limitations Scale

Abstract

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...

Switch from intravenous to subcutaneous immunoglobulin in CIDP and MMN: improved tolerability and patient satisfaction

“…Clinical follow-up included two validated assessment tools, the Overall Neuropathy Limitation Scale (ONLS, 0 = normal, 11 = worst) to assess disability [Graham and Hughes, 2006], and Medical Research Council (MRC) sum score to assess muscle strength [Dyck et al 2005], modified by the addition of the first dorsal interosseous muscle to give seven muscles on each side (70 = normal, 0 = worst). We also developed and applied a written questionnaire (unvalidated) prospectively to assess treatment satisfaction with SCIG.…”

PBSC mobilization in newly diagnosed patients with POEMS syndrome: outcomes and prognostic factors

“…Overall neuropathy limitation scale with normal value zero in each limb was used to assess neurological disability as described elsewhere. 10 Patients with total overall neuropathy limitation scale score 43 were considered as having severe neuropathy. Signs of edema, ascites, lymphadenopathy, splenomegaly and hepatomegaly were qualitatively evaluated by physical examination, ultrasound and/or computed tomography scanning.…”

Efficacy of lenalidomide in POEMS syndrome: A retrospective study of 20 patients

“…CT, echocardiography, pulmonary function tests, 18-FDG-PET/CT, and electrophysiology were performed every 3 to 6 months according to local practices. An ONLS score (Overall Neuropathy Limitation Scale) [16], was made retrospectively and independently by three operators to assess the neurological response; the results were pooled and put in Table II. The ONLS is a scale that measures limitations in the everyday activities of the upper and lower limbs.…”