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Pharmacogenomics and asthma treatment: acceptability to children, families and healthcare professionals
  1. Christopher Mark Parry1,2,
  2. Gabrielle Seddon3,
  3. Naomi Rogers3,
  4. Ian P Sinha4,
  5. Louise Bracken3,
  6. Charlotte King2,
  7. Matthew Peak3,5,
  8. Daniel B Hawcutt1,2
  1. 1 Department of Research, NIHR Alder Hey Clinical Research Facility, Liverpool, UK
  2. 2 Department of Women’s and Children’s Health, University of Liverpool, Liverpool, UK
  3. 3 Paediatric Medicines Research Unit, Alder Hey Children's NHS Foundation Trust, Liverpool, UK
  4. 4 Department of Respiratory Medicine, Alder Hey Children's NHS Foundation Trust, Liverpool, UK
  5. 5 Research and Development, NIHR Alder Hey Clinical Research Facility, Liverpool, UK
  1. Correspondence to Dr Daniel B Hawcutt, NIHR Alder Hey Clinical Research Facility, Liverpool L12 2AP, UK; dhawcutt{at}liverpool.ac.uk

Abstract

Background Evidence supporting personalised treatment for asthma based on an individual’s genetics is mounting. The views of children and young people (CYP), parents and healthcare professionals (HCPs) about this evolution of clinical care are not known.

Methods A pilot prospective questionnaire-based study was undertaken of CYP with asthma, their parents and HCPs at a secondary/tertiary children’s hospital in the UK.

Results Fifty-nine questionnaires were distributed and 50 returned (response rate 84.7%), comprising 26 CYP (10 were 5–11 years, 11 were 12–15 years and 5 were 16–18 years old), 13 parents and 11 HCPs. For all types of data, personal information was ranked as the ‘most important’ (n=19, 47.5%) and ‘most private’ (n=16, 40%), but with considerable variation across groups. Within health data, allergies were rated as ‘most important’ (n=12, 30.8%), and mental health records the ‘most private’ (n=21, 53.8%), again with variation across groups. A ‘personalised genetic asthma plan’ was acceptable to the majority overall (n=40, 80.0%). With regard to sharing CYP’s genetic data, 23 (46%) of participants were happy for unconditional sharing between HCPs, and 23 (46%) agreed to sharing solely in relation to the CYP’s asthma management. Forty-two (84.0%) of participants felt CYP should be informed about genetic data being shared, and the majority felt this should commence by 12 years of age.

Conclusion The use of genetic information to guide management of asthma in CYP is largely acceptable to CYP, parents/guardians and HCPs. However, there are key differences between the opinions of CYP, parents and HCPs.

  • paediatrics
  • genetics
  • qualitative research
  • respiratory medicine

Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplemental information. Summarised data are available in the written manuscript. Request for raw data will be considered upon request.

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Data availability statement

Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplemental information. Summarised data are available in the written manuscript. Request for raw data will be considered upon request.

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Footnotes

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  • Collaborators Not applicable.

  • Contributors CMP monitored data collection for the whole study, cleaned and analysed the data, and drafted and revised the paper. LB and CK designed data collection tools. GS, NR, LB and CK implemented the study. IPS, MP and DH contributed to the grant application and study design. DH is the guarantor, and he initiated the study, monitored data collection for the whole study and revised the draft paper.

  • Funding This study was funded by Medical Research Council (Confidence in Concept Fund).

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the MRC, NHS, the NIHR or the Department of Health.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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