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

Study Overview
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Brief Summary
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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.

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

Conditions
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Neuromuscular Diseases, Neurological Diseases or Conditions

Intervention / Treatment
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* Other: Semi-structured telephone questionnaire


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 16 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Adult patients with neuromuscular or neurological disorders<br>Telephone questionnaires administered directly to patients over 16 years of age with neuromuscular or neurological disorders | Other: Semi-structured telephone questionnaire<br>* Semi-structured telephone questionnaire<br>|
| Parents of paediatric patients with neuromuscular or neurological disorders<br>Telephone questionnaires administered to the parents of patients over 16 years of age with neuromuscular or neurological disorders | Other: Semi-structured telephone questionnaire<br>* Semi-structured telephone questionnaire<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 | 4 months | 
| Qualitative evaluation of the social environment of patients with NMDs | Qualitative analysis describing the social environment of patients with NMDs | 4 months | 
| Qualitative evaluation of the social activities of patients with NMDs | Qualitative analysis describing the social activities of patients with NMDs | 4 months | 
| Qualitative evaluation of the professional activities of patients with NMDs | Qualitative analysis describing 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 | Evaluation of semi-structured questionnaires using thematic analysis | 4 months | 
| Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic | Evaluation of semi-structured questionnaires using thematic analysis | 4 months |