Epidemiology of Sleep Disordered Breathing in Children and Young People With Cerebral Palsy

The study will be conducted as a nationwide UK Sleep Surveillance Survey of children with cerebral palsy. It will be conducted as a two-part survey (UK-wide point prevalence survey and UK-wide Incidence self-reporting form).

There is no national registry of children with cerebral palsy (CP) which collects information on sleep or sleep disordered breathing (SDB) for the purpose of this study. Hence, the investigators will recruit all tertiary paediatric centres across the UK which offers sleep services to children. A single point of contact will be identified for further communication and to act as local champion for collecting the relevant information in each centre.

I) National point prevalence survey;

• Single point of contact (PoCo) identified across tertiary paediatric centre which offer sleep services
• Single questionnaire sent on pre-specified date to PoCo in each centre
• Study will aim to;

• assess number of children in each centre with CP established on respiratory support
• gather information on practices in different centres pertaining to their assessment and management of children with CP and suspected SDB

II) National Incidence self reporting form;

• This phase of the review will a conducted over a 1-year period
• Will be conducted as a 2-part survey, with the PoCo being sent a monthly self-reporting form;

• Part A;

• To identify number of children with CP who underwent sleep study, the proportion of those who were diagnosed with SDB, and the total number of children with CP who were initiated on respiratory support (regardless of sleep study results) in that calendar month
• To be completed by PoCo in all centres
• If any children with CP were newly initiated on respiratory support (regardless of sleep study results), PoCo will be directed to complete Part B
• Part B;

• Will gather further information on children with CP who were initiated on respiratory support in the calendar month (regardless of sleep study results), with a separate form for each child
• Data collected will assess association between socio-economic factors (ethnicity, social deprivation index and urban-rural classification) and diagnosis of sleep disordered breathing and/or being initiated on respiratory support in children with CP
• No power calculation has been done for this review, as this is an observational study with an aim to include all children with cerebral palsy, newly diagnosed with SDB and/or started on respiratory support in the UK

Inclusion criteria

Cases for Prevalence survey;

• Any child aged ≤16 years old, with a confirmed diagnosis of cerebral palsy
• On respiratory support on the date of prevalence survey

Cases for Incidence self-reporting form;

• Part A;

• Any Child aged ≤16 years old, with confirmed diagnosis of cerebral palsy
• Had sleep studies for suspected sleep disordered breathing within the preceding calendar month
• Part B;

• Any Child aged ≤16 years old, with a confirmed diagnosis of cerebral palsy
• Initiated respiratory support (CPAP or NIV or invasive tracheostomy ventilation) in the preceding month

Exclusion criteria

(For prevalence survey and incidence self-reporting form)

• Any patient aged >16 years old
• Patient does not have a confirmed diagnosis of cerebral palsy