Children hospitalised with acute exacerbations of asthma

• Research type

  Research Study

• Full title

  Children hospitalised with acute exacerbations of asthma: what matters to patients and their families?

• IRAS ID

  292898

• Contact name

  Damian Roland

• Contact email

  dr98@le.ac.uk

• Sponsor organisation

  University Hospitals of Leicester NHS Trust

• Duration of Study in the UK

  0 years, 3 months, 0 days

• Research summary

  Research Summary
  The treatment for children with severe asthma exacerbations is variable between hospitals. This is because there are many treatments available and there isn’t conclusive evidence to support one treatment above another. There is also a lack of patient and family involvement in determining which outcomes are most important to them.

  The Pediatric Emergency Research Networks (PERN) asthma working group was formed in 2017, with the aims of improving asthma outcome measures (with the input of patients, families and clinicians) for children. Currently, the group comprises members from seventeen countries.

  This proposed project – the second for the asthma working group - aims to assess the perspectives of families regarding their experience of acute exacerbations of asthma.

  By speaking directly to families we aim to determine which outcomes are most important to them, and identify appropriate language to use when presenting these outcomes in later surveys. These perspectives will directly inform the development of a planned survey, which aims to achieve consensus on core outcome measures for these patients.

  To ensure global representation and maximum diversity, we aim to analyse the perspectives from a number of different patient groups, from multiple emergency departments in a variety of settings around the world. The aim is to include a selection of children with recent experience of acute severe asthma exacerbations managed in a variety of hospitals, in a variety of health-care systems.

  Summary of Results
  Interviews with patients / families were conducted by clinicians across a number of countries, recruited through the Paediatric Emergency Research Network (PERN) asthma working group.

  An interview guide was provided, and all interviews were audio recorded and transcribed by a professional transcription service. Where necessary, transcriptions were then professionally translated into English.
  In total, 52 interviews were conducted in 13 countries (Argentina, Australia, Canada, China, Colombia, Costa Rica, Nigeria, Paraguay, Qatar, Singapore, Spain, United Kingdom, United States of America)
  Key themes related to:
  1) presentation to hospital (causes of, barriers to and delays to presentation)
  2) social determinants, including financial situation and community support
  3) environment and facilities (parking availability, aspects of the hospital interior)
  4) Timeliness (time spent in the waiting room and/or Emergency Department, time spent waiting for clinical review, and time spent waiting for treatment)
  5) Medical management (types of intervention, speed of recovery, quality of and symptoms response to both inpatient and outpatient management)
  6) information and communication (communication with parents, caregivers, and children, as well as parents’ / caregivers’ comfort in asking questions)
  7) compassion - the extent to which healthcare staff demonstrated courtesy, respect, and kindness to parents / caregivers and patients, including providing reassurance
  8) consideration for parent’s / caregivers’ and patients’ perspectives - participants consistently appreciated when healthcare providers listened to their perspective or the perspective of the patient.
  9) communication between healthcare providers - this includes both interpersonal communication during the discussed admission and the consistency (or inconsistency) of care between services.
  10) outpatient management (includes confidence of parents / caregivers in home management, as well as GP follow-up and specialist referrals).

  The project is currently being prepared for publication.

• REC name

  London - Chelsea Research Ethics Committee

• REC reference

  21/LO/0047

• Date of REC Opinion

  26 Feb 2021

• REC opinion

  Further Information Favourable Opinion