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

NCT04581577 | Completed

• 1 other identifier: 286495
• Study Type: observational
• Target: 40
• Locations: 1 country
• Sites: 1

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.

Conditions

Neuromuscular Diseases; Neurological Diseases or Conditions

Outcome Measures

Primary Outcomes (1)

• Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders

  Evaluation of semi-structured questionnaires using thematic analysis

  4 months

Secondary Outcomes (6)

• Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic

  4 months

• Qualitative evaluation of the social environment of patients with NMDs

  4 months

• Qualitative evaluation of the social activities of patients with NMDs

  4 months

• Qualitative evaluation of the professional activities of patients with NMDs

  4 months

• Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders

  4 months

Study Arms (2)

Adult patients with neuromuscular or neurological disorders

Telephone questionnaires administered directly to patients over 16 years of age with neuromuscular or neurological disorders

Other: Semi-structured telephone questionnaire

Parents of paediatric patients with neuromuscular or neurological disorders

Telephone questionnaires administered to the parents of patients over 16 years of age with neuromuscular or neurological disorders

Other: Semi-structured telephone questionnaire

Interventions

Semi-structured telephone questionnaire OTHER

Semi-structured telephone questionnaire

Adult patients with neuromuscular or neurological disorders; Parents of paediatric patients with neuromuscular or neurological disorders

Eligibility Criteria

• Age: 16 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with a diagnosis of a neuromuscular and/or neurological disorder including Duchenne muscular dystrophy, spinal muscular atrophy, congenital muscular dystrophies, and other neuromuscular and neurological disorders

You may qualify if:

• 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

You may not qualify if:

• Unwilling for telephone questionnaire to be audio-recorded

Sponsors & Collaborators

• Royal Brompton & Harefield NHS Foundation Trust: lead

Study Sites (1)

Royal Brompton Hospital

London, SW3 6HP, United Kingdom

Location

Related Publications (1)

• Spurr L, Tan HL, Wakeman R, Chatwin M, Hughes Z, Simonds A. Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study. BMJ Open. 2022 Mar 30;12(3):e055430. doi: 10.1136/bmjopen-2021-055430.

  PMID: 35354630 RESULT

MeSH Terms

Conditions

Neuromuscular Diseases

Condition Hierarchy (Ancestors)

Nervous System Diseases

Study Officials

• Anita Simonds, MBBS

  Royal Brompton & Harefield NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 29, 2020
• First Posted: October 9, 2020
• Study Start: September 11, 2020
• Primary Completion: December 31, 2020
• Study Completion: December 31, 2020
• Last Updated: October 16, 2024

Record last verified: 2024-10

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)