Clinical trial NCT04581577: Perceptions of the Clinical and Psychosocial Impact of Covid-19 in Patients With NMD
Official title: Perceptions of the Clinical and Psychosocial Impact of Covid-19 in Patients With Neuromuscular and Neurological Disorders
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Neuromuscular Diseases
Neurological Diseases or Conditions
Lead sponsor: Royal Brompton & Harefield NHS Foundation Trust
Sponsor class: OTHER
First posted: 2020-10-09
Enrollment: 40
Sex: ALL
Minimum age (years): 16
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: 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

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

Eligibility criteria: 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

Primary outcomes:
measure: Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders
timeFrame: 4 months
Secondary outcomes:
measure: Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic
timeFrame: 4 months
measure: Qualitative evaluation of the social environment of patients with NMDs
timeFrame: 4 months
measure: Qualitative evaluation of the social activities of patients with NMDs
timeFrame: 4 months
measure: Qualitative evaluation of the professional activities of patients with NMDs
timeFrame: 4 months
measure: Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders
timeFrame: 4 months
measure: Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic
timeFrame: 4 months
Other outcomes:
Locations:
city: London
country: United Kingdom
facility: Royal Brompton Hospital
Study officials:
affiliation: Royal Brompton & Harefield NHS Foundation Trust
name: Anita Simonds, MBBS
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.