Perceptions of the Clinical and Psychosocial Impact of Covid-19 in Patients With NMD

Completed

• Conditions: Neuromuscular Diseases; Neurological Diseases or Conditions
• Interventions: Other: Semi-structured telephone questionnaire

• Registration Number: NCT04581577
• Lead Sponsor: Royal Brompton & Harefield NHS Foundation Trust

Brief Summary

This study aims to evaluate perceived clinical and psychosocial experiences of patients and their families during the Covid-19 pandemic. it is important to understand the implications of the pandemic for this population, particularly given its likely protracted course, and resultant limitations to daily activities and clinical care. This will help clinicians plan support and adaptations to the services they provide in the medium to long term.

Detailed Description

As above

Study Timeline

• Study Start: 2020-09-11
• Study First Submitted: 2020-09-29
• Study First Submitted QC: 2020-10-07
• Study First Posted: 2020-10-09
• Primary Completion: 2020-12-31
• Study Completion: 2020-12-31
• Status Verified: 2024-10
• Last Update Submitted: 2024-10-14
• Last Update Posted: 2024-10-16

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 40

Inclusion Criteria

Adult group

• Patient over 16 years of age with a confirmed diagnosis of neuromuscular and/or neurological disorder
• Able and willing to provide informed consent

Paediatric group

• Parent of a patient under 16 years of age with a confirmed diagnosis of neuromuscular and/or neurological disorder
• Able and willing to provide informed consent

Exclusion Criteria

• Unwilling for telephone questionnaire to be audio-recorded

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Parents of paediatric patients with neuromuscular or neurological disorders	Semi-structured telephone questionnaire	Telephone questionnaires administered to the parents of patients over 16 years of age with neuromuscular or neurological disorders
Adult patients with neuromuscular or neurological disorders	Semi-structured telephone questionnaire	Telephone questionnaires administered directly to patients over 16 years of age with neuromuscular or neurological disorders

Primary Outcome Measures

Name	Time	Method
Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders	4 months	Evaluation of semi-structured questionnaires using thematic analysis

Secondary Outcome Measures

Name	Time	Method
Qualitative evaluation of the social environment of patients with NMDs	4 months	Qualitative analysis describing the social environment of patients with NMDs
Qualitative evaluation of the social activities of patients with NMDs	4 months	Qualitative analysis describing the social activities of patients with NMDs
Qualitative evaluation of the professional activities of patients with NMDs	4 months	Qualitative analysis describing the professional activities of patients with NMDs
Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic	4 months	Evaluation of semi-structured questionnaires using thematic analysis
Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic	4 months	Quantitative analysis of the proportion of questionnaire respondents reporting confirmed or suspected Covid-19 infection
Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders	4 months	Evaluation of semi-structured questionnaires using thematic analysis

Trial Locations

Locations (1)

Royal Brompton Hospital; 🇬🇧 London, United Kingdom