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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.
As above
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Adult patients with neuromuscular or neurological disorders | Telephone questionnaires administered directly to patients over 16 years of age with neuromuscular or neurological disorders |
| |
| 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 |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Semi-structured telephone questionnaire | Other | Semi-structured telephone questionnaire |
|
| 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 |
| 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 |
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Inclusion Criteria:
Adult group
Paediatric group
Exclusion Criteria:
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Patients with a diagnosis of a neuromuscular and/or neurological disorder including Duchenne muscular dystrophy, spinal muscular atrophy, congenital muscular dystrophies, and other neuromuscular and neurological disorders
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| Name | Affiliation | Role |
|---|---|---|
| Anita Simonds, MBBS | Royal Brompton & Harefield NHS Foundation Trust | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Royal Brompton Hospital | London | SW3 6HP | United Kingdom |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 35354630 | Result | Spurr L, Tan HL, Wakeman R, Chatwin M, Hughes Z, Simonds A. Psychosocial impact of the COVID-19 pandemic and shielding in adults and children with early-onset neuromuscular and neurological disorders and their families: a mixed-methods study. BMJ Open. 2022 Mar 30;12(3):e055430. doi: 10.1136/bmjopen-2021-055430. |
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| ID | Term |
|---|---|
| D009468 | Neuromuscular Diseases |
| ID | Term |
|---|---|
| D009422 | Nervous System Diseases |
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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 |