Perceptions of the Clinical and Psychosocial Impact of Covid-19 in Patients With Neuromuscular and Neurological Disorders

Royal Brompton & Harefield NHS Foundation Trust1 site in 1 country40 target enrollmentSeptember 11, 2020

ConditionsNeuromuscular Diseases Neurological Diseases or Conditions

Overview

Phase: Not Applicable
Intervention: Not specified
Conditions: Neuromuscular Diseases
Sponsor: Royal Brompton & Harefield NHS Foundation Trust
Enrollment: 40
Locations: 1
Primary Endpoint: Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders
Status: Completed
Last Updated: last year

Overview Investigators Eligibility Criteria Outcomes Sites Similar Trials

Overview

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

Registry

clinicaltrials.gov

Start Date

September 11, 2020

End Date

December 31, 2020

Last Updated

last year

Study Type

Observational

Sex

All

Investigators

Sponsor

Royal Brompton & Harefield NHS Foundation Trust

Responsible Party

Sponsor

Eligibility Criteria

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

Outcomes

Primary Outcomes

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

Time Frame: 4 months

Evaluation of semi-structured questionnaires using thematic analysis

Secondary Outcomes

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 concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic(4 months)
Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders(4 months)
Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic(4 months)