Quality of Life in Hereditary and Inflammatory Peripheral Neuropathies
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: WHODAS 2.0 questionnaire.
- Who it may be relevant to
- Registry conditions: Hereditary and Inflammatory Peripheral Neuropathies. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- France
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Cross-sectional Observational Study on the Impact of Neuromuscular Diseases on Quality of Life: Focus on Peripheral Neuropathies (Hereditary vs Inflammatory)
Overview
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."
Interventions
- Other WHODAS 2.0 questionnaire
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.
Primary outcome measures
- Quality of life (WHOQOL-BREF score) [Time frame: At the inclusion]
Secondary outcome measures (7)
- Comparison of perceived quality of life [Time frame: At the inclusion]
- Association between functioning and quality of life [Time frame: At the inclusion]
- Factors associated with impaired functioning and quality of life [Time frame: At the inclusion]
- Role of assistive technologies (MPT) [Time frame: At the inclusion]
- Profile of limitations [Time frame: At the inclusion]
- Activity restrictions [Time frame: At the inclusion]
- Environmental factors [Time frame: At the inclusion]
Eligibility criteria
Inclusion criteria
- Clinical and paraclinical diagnosis compatible with hereditary or inflammatory peripheral neuropathy, confirmed by the investigating physicians (genetic results for HPN if available; clinical/electrophysiological criteria for IPN).
- Written informed consent.
- Ability to complete the questionnaires (or with the assistance of a caregiver if necessary, specifying the mode of assistance).
Exclusion criteria
- Legal incapacity (under guardianship or conservatorship).
- Moderate to severe cognitive impairment (e.g., MMSE < 27) preventing valid comprehension and completion of the questionnaires.
- Active cancer undergoing chemotherapy or radiotherapy (treatment likely to significantly alter quality of life in a non-specific way).
- Other acute serious medical conditions that could interfere with assessment, at the investigator's discretion.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-control
Study locations
France · 1 center
- CHU de Nice — Nice
Identifiers
NCT: NCT07340749 · 26Neuro01