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

Royal Brompton & Harefield NHS Foundation Trust40 enrolled

Overview

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.

As above

Study Type

OBSERVATIONAL

Enrollment

Conditions

Neuromuscular Diseases Neurological Diseases or Conditions

Interventions

Semi-structured telephone questionnaireOTHER

Semi-structured telephone questionnaire

Eligibility

Sex: ALLMin age: 16 YearsHealthy volunteers:

Medical Language ↔ Plain English

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

Locations (1)

Royal Brompton Hospital

London, United Kingdom

Outcomes

Primary Outcomes

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

Time frame: 4 months

Secondary Outcomes

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

Quantitative analysis of the proportion of questionnaire respondents reporting confirmed or suspected Covid-19 infection

Time frame: 4 months

Qualitative evaluation of the social environment of patients with NMDs

Qualitative analysis describing the social environment of patients with NMDs

Time frame: 4 months

Qualitative evaluation of the social activities of patients with NMDs

Qualitative analysis describing the social activities of patients with NMDs

Time frame: 4 months

Qualitative evaluation of the professional activities of patients with NMDs

Qualitative analysis describing the professional activities of patients with NMDs

Time frame: 4 months

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

Evaluation of semi-structured questionnaires using thematic analysis

Time frame: 4 months

Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic

Data from ClinicalTrials.gov

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