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Neuromuscular diseases affect the nerves and muscles and can cause weakness, pain, fatigue, and difficulties in daily life. These problems may reduce independence, social participation, and overall quality of life.This observational study aims to evaluate the impact of peripheral neuropathies on quality of life. It focuses on two types of peripheral neuropathies: hereditary neuropathies, caused by genetic factors, and inflammatory neuropathies, caused by immune-related nerve damage. Adult patients with these conditions will be assessed at a single time point, without any change to their usual medical care. Participants will complete questionnaires about daily functioning, well-being, and quality of life. Some questions will also explore the use of assistive devices and supportive tools in everyday life.The study hypothesizes that peripheral neuropathies significantly affect quality of life and that this impact differs between hereditary and inflammatory forms. The results aim to improve understanding of patients' needs and support better, more personalized care."
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with Hereditary peripheral neuropathies | "WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context." |
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| Patients with inflammatory peripheral neuropathies | "WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context." |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| WHODAS 2.0 questionnaire | Other | WHODAS 2.0: Assesses daily functioning and disability across six domains: understanding, mobility, self-care, interpersonal relationships, domestic activities, and social participation. WHOQOL-BREF: Measures overall quality of life in four domains: physical, psychological, social relationships, and environment. MPT Questionnaire (SOTU and ATD PA): Evaluates participants' attitudes, perceptions, and professional practices in a specific organizational or educational context. |
| Measure | Description | Time Frame |
|---|---|---|
| Quality of life (WHOQOL-BREF score) | Quality of life (WHOQOL-BREF score) at baseline (M0) in patients with hereditary peripheral neuropathy (HPN) and inflammatory peripheral neuropathy (IPN) | At the inclusion |
| Measure | Description | Time Frame |
|---|---|---|
| Comparison of perceived quality of life | Comparison of perceived quality of life between HPN and IPN groups using WHOQOL-BREF scores | At the inclusion |
| Association between functioning and quality of life |
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Inclusion Criteria:
Exclusion Criteria:
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The study will include two groups of patients. Group A will consist of 30 patients with hereditary peripheral neuropathy (e.g., Charcot-Marie-Tooth disease and other HPNs). Group B will include 30 patients with inflammatory peripheral neuropathy (e.g., acute or chronic inflammatory demyelinating polyneuropathies, autoimmune neuropathies).
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Sabrina Sacconi | Contact | 0492038953 | + 33 | sacconi.s@chu-nice.fr |
| Slioui :Abderhmane | Contact | 0492038953 | +33 | :slioui.a@chu-nice.fr |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU de Nice | Nice | Alpes Maritimes | 06000 | France |
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correlation between WHODAS 2.0 scores and WHOQOL-BREF scores.
| At the inclusion |
| Factors associated with impaired functioning and quality of life | identification of clinical or demographic variables linked to lower WHODAS 2.0 or WHOQOL-BREF scores. | At the inclusion |
| Role of assistive technologies (MPT) | Evaluation of the impact or use of assistive technologies on functioning and quality of life. | At the inclusion |
| Profile of limitations | Assessment using WHODAS 2.0 scores to describe functional limitations | At the inclusion |
| Activity restrictions | Assessment using WHODAS 2.0 scores | At the inclusion |
| Environmental factors | Assessment using WHODAS 2.0 scores | At the inclusion |