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

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

40 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-09-11

Study Completion Date

2020-12-31

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.

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Detailed Description

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As above

Conditions

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Neuromuscular Diseases Neurological Diseases or Conditions

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Adult patients with neuromuscular or neurological disorders

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

Semi-structured telephone questionnaire

Intervention Type 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

Semi-structured telephone questionnaire

Intervention Type OTHER

Semi-structured telephone questionnaire

Interventions

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Semi-structured telephone questionnaire

Intervention Type OTHER

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