Quality of Life in Hereditary and Inflammatory Peripheral Neuropathies

Centre Hospitalier Universitaire de Nice

Status: Not yet enrolling

Conditions: Hereditary and Inflammatory Peripheral Neuropathies

Treatments: Other: WHODAS 2.0 questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT07340749

26Neuro01

Details and patient eligibility

About

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."

Enrollment: 60 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.

Trial design

60 participants in 2 patient groups

Patients with Hereditary peripheral neuropathies

Description:

"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."

Treatment:

Other: WHODAS 2.0 questionnaire

Patients with inflammatory peripheral neuropathies

Description:

"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."

Treatment:

Other: WHODAS 2.0 questionnaire