Optimizing the Use of Outcome Measures in Chronic Inflammatory Demyelinating Polyneuropathy

US Neurology ◽  
2017 ◽  
Vol 13 (01) ◽  
pp. 26 ◽  
Author(s):  
Jeffrey A Allen ◽  
Deborah F Gelinas ◽  
Richard A Lewis ◽  
Richard J Nowak ◽  
Gil I Wolfe ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Chronic Inflammatory Demyelinating Polyneuropathy ◽  
Unmet Need ◽  
Daily Practice ◽  
Demyelinating Polyneuropathy ◽  
Disability Score ◽  
Sum Score ◽  
Inflammatory Neuropathy ◽  
Inflammatory Demyelinating Polyneuropathy

The challenges encountered during the assessment of patients with chronic inflammatory demyelinating polyneuropathy (CIDP) are many. Ideally, CIDP outcome measures capture impairments in disability, strength, and sensory dysfunction, and quality of life (QoL). A number of outcome measures have been validated for this purpose. Disability outcomes include the adjusted inflammatory neuropathy cause and treatment (INCAT) disability score, INCAT overall disability sum score (ODSS), and overall neuropathy limitations scale (ONLS). A more sensitive disability score, the inflammatory Rasch-built overall disability scale (I-RODS), has also been validated for use in clinical trials and may better capture clinically meaningful changes in those with CIDP. Strength and sensory impairment can be assessed in a number of ways, including the INCAT sensory subscore (ISS), Medical Research Council sum score, and Martin vigorimeter or Jamar dynamometer grip strength. However, the feasibility of applying and interpreting these measures during routine daily practice has been questioned. Furthermore, these outcome measures may not reflect other factors that can impair QoL in those affected by CIDP, such as pain and fatigue. A valid, reliable, and responsive composite measure that addresses all aspects of impairment faced by patients with CIDP remains an unmet need in clinical practice.

scholarly journals Outcome measures for chronic inflammatory demyelinating polyneuropathy in research: relevance and applicability to clinical practice

2019 ◽  
Vol 9 (5) ◽  
pp. 259-266 ◽  
Author(s):  
Yusuf A Rajabally ◽  
Farzad Fatehi
Keyword(s):  
Clinical Practice ◽  
Outcome Measures ◽  
Chronic Inflammatory Demyelinating Polyneuropathy ◽  
Controlled Trial ◽  
Evidence Base ◽  
Demyelinating Polyneuropathy ◽  
Inflammatory Demyelinating Polyneuropathy ◽  
Secondary Outcomes ◽  
Term Monitoring

Outcome measures are recommended in the management of chronic inflammatory demyelinating polyneuropathy (CIDP). Various scales have been proposed in recent years, some now commonly utilized in daily clinical practice. The available evidence base relies itself on randomized controlled trial data obtained over the past 30 years, with several studies using different primary and secondary outcomes. We here review the different outcome measures used in CIDP research in relation to those currently recommended for clinical management. We consider the evidence base for CIDP treatment from the primary and secondary outcomes used in these studies and attempt to assess how this may relate to current clinical practice of routine evaluation of treatment effects and long-term monitoring.

Chronic inflammatory demyelinating polyneuropathy associated with diabetes: a European multicentre comparative reappraisal

2020 ◽  
Vol 91 (10) ◽  
pp. 1100-1104 ◽  
Author(s):  
Yusuf A Rajabally ◽  
Stojan Peric ◽  
Mina Cobeljic ◽  
Saadia Afzal ◽  
Ivo Bozovic ◽  
...  
Keyword(s):  
General Population ◽  
Chronic Inflammatory Demyelinating Polyneuropathy ◽  
Demyelinating Polyneuropathy ◽  
Diabetes Prevalence ◽  
Management Implications ◽  
Population Prevalence ◽  
Typical Form ◽  
Inflammatory Neuropathy ◽  
Inflammatory Demyelinating Polyneuropathy ◽  
The Uk

IntroductionThe association between chronic inflammatory demyelinating polyneuropathy (CIDP) and diabetes is uncertain despite important diagnostic and management implications.MethodsWe retrospectively analysed two European cohorts, totaling 257 patients with ‘definite’ or ‘probable’ CIDP, from Serbia and Birmingham, UK.ResultsDiabetes was present at CIDP diagnosis in 25/139 (18%) subjects in the Serbian cohort and in 23/118 (19.5%) in the UK cohort. In both cohorts, diabetes prevalence was higher than local general population prevalence rates (RR: 2.09; 95% CI 1.39 to 2.95 and RR: 2.22; 95% CI 1.46 to 3.17, respectively). Considering typical CIDP only, diabetes prevalence was greater than expected in both cohorts (RR: 2.58; 95% CI 1.60 to 3.82 and RR: 2.68; 95% CI 1.71 to 3.87, respectively). CIDP with diabetes occurred later in life than CIDP without diabetes (58.96 years, SD: 11.09 vs 51.71 years, SD: 16.02; p=0.003) and presented more frequently in the typical form than in patients without diabetes (79.2% vs 61.2%; p=0.02). Baseline Inflammatory Neuropathy Cause and Treatment disability scores were similar in patients with and without diabetes (p=0.90). Proportions of treatment responders were similar in both groups (70% vs 74.9%; p=0.65), as were response amplitudes (p=0.87).DiscussionOur results, both for all CIDP and typical CIDP presentations, support a twofold increased relative risk of diabetes compared with the general population. CIDP with diabetes appears to present older and more frequently in the typical form, as compared with CIDP without diabetes. CIDP with diabetes appears similar to CIDP without diabetes in disability levels at diagnosis and probability, as well as amplitude of treatment response.

scholarly journals CHRONIC DEMYELINIZING POLYNEUROPATHY: ETIOPATHOGENETIC, CLINICAL ASPECTS, MODERN DIRECTIONS OF MEDICAL THERAPY

2021 ◽  
Vol 1 (67) ◽  
pp. 23-25
Author(s):  
A. Meshcheryakova ◽  
A. Vorobyova
Keyword(s):  
Chronic Inflammatory Demyelinating Polyneuropathy ◽  
Autoimmune Disorder ◽  
Practical Experience ◽  
Genetically Engineered ◽  
Demyelinating Polyneuropathy ◽  
Clinical Aspects ◽  
Off Label ◽  
Inflammatory Demyelinating Polyneuropathy ◽  
Progressive Course

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare autoimmune disorder of the peripheral nervous system. The article discusses the practical experience of using off label therapy with rituximab in the complex treatment of a patient with a progressive course of chronic inflammatory demyelinating polyneuropathy. Due to the ineffectiveness of standard therapy, the option of treatment with genetically engineered drugs (rituximab) was considered. The use of rituximab contributed to the achievement of positive dynamics and an improvement in the patient's quality of life.

scholarly journals Underdiagnosis and diagnostic delay in chronic inflammatory demyelinating polyneuropathy

2020 ◽  
Author(s):  
Umair J. Chaudhary ◽  
Yusuf A. Rajabally
Keyword(s):  
Chronic Inflammatory Demyelinating Polyneuropathy ◽  
Diagnostic Delay ◽  
Final Diagnosis ◽  
Demyelinating Polyneuropathy ◽  
European Federation ◽  
Delay In Diagnosis ◽  
Alternative Diagnosis ◽  
Inflammatory Neuropathy ◽  
Inflammatory Demyelinating Polyneuropathy ◽  
Made In

Abstract Background The frequency and causes of underdiagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP) are uncertain. We aimed to assess the frequency and electroclinical features of pre-referral CIDP underdiagnosis and the duration of delay prior to diagnosis and treatment initiation in a tertiary specialist clinic. Methods We retrospectively investigated 60 consecutive patients attending our Inflammatory Neuropathy Service, between 2015 and 2019, with a final diagnosis of treatment-responsive definite/probable CIDP. We reviewed the clinical and electrophysiological data in light of European Federation of Neurological Societies/Peripheral Nerve Society (EFNS/PNS) guidelines and determined the frequency, causes and delay in diagnosis of CIDP. Results An initial alternative diagnosis to that of CIDP had been made in 68.3% (41/60) of patients. The commonest alternative diagnosis was of Guillain–Barré syndrome (GBS) in 23.3% (14/60) patients. Non-GBS underdiagnoses (27/60; 45%) mainly consisted of genetic neuropathy (8/27; 29.6%), diabetic neuropathy (5/27; 18.5%) and chronic idiopathic axonal polyneuropathy (4/27; 14.8%). Non-GBS underdiagnoses were predominantly due to non-recognition of proximal weakness (70.4%), multifocal deficits (18.5%) or proprioceptive loss (7.4%). Electrophysiological misinterpretation was contributory to pre-referral non-GBS underdiagnoses of CIDP in 85% of patients. Mean diagnostic delay in patients with non-GBS underdiagnoses of CIDP was of 21.3 months (range 2–132 months). Conclusion Underdiagnosis of CIDP is frequent and may lead to significant diagnostic and treatment delay. We suggest that lack of comprehensive and precise attention to typical electroclinical features of CIDP and its diagnostic criteria at the time of initial evaluation are equally contributory to underdiagnoses.

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