Quality of life in chronic inflammatory demyelinating polyneuropathy patients treated with subcutaneous immunoglobulin

Ryltoft, Anne Kathrine; Al‐Zuhairy, Ali; Sindrup, Søren Hein; Andersen, Henning; Markvardsen, Lars Kjøbsted

doi:10.1111/ane.13322

Cited by 6 publications

(8 citation statements)

References 19 publications

(40 reference statements)

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“…All EQ-5D-5L modalities showed a decrease in patients reporting problems at 1 year. A considerable number of patients reported problems on the individual domains, in line with previous literature [ 45 , 46 ]. Although pain and fatigue can be also attributed to active disease, we would like to emphasize that residual symptoms on themselves should not be the reason to start or continue immunomodulating or immunosuppressive treatment in absence of objective signs of active disease.…”

Section: Discussionsupporting

confidence: 88%

Clinical outcome of CIDP one year after start of treatment: a prospective cohort study

et al. 2021

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Objective To assess clinical outcome in treatment-naive patients with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). Methods We included adult treatment-naive patients participating in the prospective International CIDP Outcome Study (ICOS) that fulfilled the European Federation of Neurological Societies/Peripheral Nerve Society (EFNS/PNS) diagnostic criteria for CIDP. Patients were grouped based on initial treatment with (1) intravenous immunoglobulin (IVIg), (2) corticosteroid monotherapy or (3) IVIg and corticosteroids (combination treatment). Outcome measures included the inflammatory Rasch-built overall disability scale (I-RODS), grip strength, and Medical Research Council (MRC) sum score. Treatment response, treatment status, remissions (improved and untreated), treatment changes, and residual symptoms or deficits were assessed at 1 year. Results Forty patients were included of whom 18 (45%) initially received IVIg, 6 (15%) corticosteroids, and 16 (40%) combination treatment. Improvement on ≥ 1 of the outcome measures was seen in 31 (78%) patients. At 1 year, 19 (48%) patients were still treated and fourteen (36%) patients were in remission. Improvement was seen most frequently in patients started on IVIg (94%) and remission in those started on combination treatment (44%). Differences between groups did not reach statistical significance. Residual symptoms or deficits ranged from 25% for neuropathic pain to 96% for any sensory deficit. Conclusions Improvement was seen in most patients. One year after the start of treatment, more than half of the patients were untreated and around one-third in remission. Residual symptoms and deficits were common regardless of treatment.

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Section: Discussionsupporting

confidence: 88%

Clinical outcome of CIDP one year after start of treatment: a prospective cohort study

et al. 2021

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“…Furthermore, most subjects chose to continue SCIg, which suggests these improvements were also clinically meaningful. Our findings are consistent with previous studies showing QOL improvements and maintained motor function and disability levels with SCIg, 1,6,21‐23 and a study showing that QOL in patients receiving SCIg correlated with disability scores 24 . The finding that LMST improved, yet HHD and T25‐FW did not, may reflect differences in the measurements (discrete vs continuous) and the different muscle groups tested.…”

Section: Discussionsupporting

confidence: 92%

“…Our findings are consistent with previous studies showing QOL improvements and maintained motor function and disability levels with SCIg, 1,6,[21][22][23] and a study showing that QOL in patients receiving SCIg correlated with disability scores. 24 The finding that LMST improved, yet HHD and T25-FW did not, may reflect differences in the measurements (discrete vs continuous) and the different muscle groups tested. Furthermore, the lack of correlation between LMST and I-RODS may be due to the fact that muscle strength at discrete time-points (LMST) may not translate into how patients perceive their level of daily function (by I-RODS).…”

Section: Discussionmentioning

confidence: 97%

Impact of subcutaneous immunoglobulin on quality of life in patients with chronic inflammatory demyelinating polyneuropathy previously treated with intravenous immunoglobulin

Anthony

Alsina

et al. 2021

Muscle and Nerve

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“…Considering that gait performance has Fig. 3 Survey responses of ' 'always' ' or ' 'often' '* on feelings about their future been shown to correlate with quality of life in patients with CIDP [12] and functional status in patients without CIDP [13], this observation is both important and expected. Pain, weakness in the hips/legs, and fatigue are other symptoms that patients are frequently looking to improve.…”

Section: Discussionmentioning

confidence: 95%

A Global Survey of Disease Burden in Patients Who Carry a Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy

et al. 2020

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Introduction: The extent to which work productivity, emotional well-being, social interactions, and family life are impacted in patients who self-identify as having chronic inflammatory demyelinating polyneuropathy (CIDP) is not well characterized. Methods: Data from an online survey of 595 individuals with self-reported CIDP, recruited by the Guillain-Barré syndrome (GBS)/CIDP Foundation, were used to assess disease and treatment burden. A total of 37% of patients were classified as ''likely'', 34% as ''somewhat likely'', and 28% as ''unlikely'' CIDP. Results: Of ten symptoms that patients with CIDP may experience, each symptom was experienced by 77-94% of ''likely'', 79-96% of ''somewhat likely'', and 66-91% of ''unlikely'' patients. In ''likely'' CIDP patients 44% stopped working because of their symptoms and 24% moved to a new home. The most common treatments were intravenous immunoglobulin (IVIg) infusion and corticosteroids. IVIg was associated with venous access issues and work/ school absenteeism. Conclusions: CIDP diagnostic confirmation was not performed in any of the survey respondents. Our results do not add any knowledge on the diagnosis or treatment of CIDP. Our findings do provide insight into the symptoms that patients that think they have CIDP or have been told they have CIDP experience, explores how patients that are labeled as having CIDP view treatment expectations, and highlights how these symptoms affect home and work life. We hope that the findings are constructively used to get patients the services they need to improve quality of life, maintain employment, and ensure a safe home environment regardless of diagnostic accuracy.

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Quality of life in chronic inflammatory demyelinating polyneuropathy patients treated with subcutaneous immunoglobulin

Cited by 6 publications

References 19 publications

Clinical outcome of CIDP one year after start of treatment: a prospective cohort study

Clinical outcome of CIDP one year after start of treatment: a prospective cohort study

Impact of subcutaneous immunoglobulin on quality of life in patients with chronic inflammatory demyelinating polyneuropathy previously treated with intravenous immunoglobulin

A Global Survey of Disease Burden in Patients Who Carry a Diagnosis of Chronic Inflammatory Demyelinating Polyneuropathy

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