Neurological Diseases or Conditions, Neuromuscular Diseases
Conditions
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
Interventions
OTHERSemi-structured telephone questionnaire
Semi-structured telephone questionnaire
Sponsors
Royal Brompton & Harefield NHS Foundation Trust
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
16 Years to No maximum
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders | 4 months | Evaluation of semi-structured questionnaires using thematic analysis |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Qualitative evaluation of the social environment of patients with NMDs | 4 months | Qualitative analysis describing the social environment of patients with NMDs |
| Qualitative evaluation of the social activities of patients with NMDs | 4 months | Qualitative analysis describing the social activities of patients with NMDs |
| Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic | 4 months | Quantitative analysis of the proportion of questionnaire respondents reporting confirmed or suspected Covid-19 infection |
| Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders | 4 months | Evaluation of semi-structured questionnaires using thematic analysis |
| Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic | 4 months | Evaluation of semi-structured questionnaires using thematic analysis |
| Qualitative evaluation of the professional activities of patients with NMDs | 4 months | Qualitative analysis describing the professional activities of patients with NMDs |
Countries
United Kingdom
Outcome results
None listed