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Paediatrics
Research
The child's perspective on discomfort during medical research procedures: a descriptive study
  1. Mira S Staphorst1,2,
  2. Marc A Benninga2,
  3. Margriet Bisschoff3,
  4. Irma Bon4,
  5. Jan J V Busschbach1,
  6. Kay Diederen2,
  7. Johannes B van Goudoever2,4,
  8. Eric G Haarman4,
  9. Joke A M Hunfeld1,
  10. Vincent V W Jaddoe3,
  11. Karin J M de Jong5,
  12. Johan C de Jongste3,
  13. Angelika Kindermann2,
  14. Marsh Königs6,
  15. Jaap Oosterlaan6,
  16. Jan Passchier7,
  17. Mariëlle W Pijnenburg3,
  18. Liesbeth Reneman2,
  19. Lissy de Ridder3,
  20. Hyke G Tamminga2,
  21. Henning W Tiemeier3,
  22. Reinier Timman1,
  23. Suzanne van de Vathorst8
  1. 1 Department of Psychiatry, Section Medical Psychology and Psychotherapy, Erasmus University Medical Centre, Rotterdam, The Netherlands
  2. 2 Department of Paediatrics, Emma Children's Hospital, Academic Medical Center (AMC), Amsterdam, The Netherlands
  3. 3 Departments of Paediatrics and Child Psychiatry, Sophia Children's Hospital, Erasmus University Medical Centre, Rotterdam, The Netherlands
  4. 4 Department of Paediatrics, VU University Medical Center (VUmc), Amsterdam, The Netherlands
  5. 5 Department of Pedodontology, Academic Center Dentistry Amsterdam (ACTA), Amsterdam, The Netherlands
  6. 6 Section of Clinical Neuropsychology, VU University, Amsterdam, The Netherlands
  7. 7 Department of Clinical Psychology/EMGO+, VU University, Amsterdam, The Netherlands
  8. 8 Department of Ethics and Philosophy, Erasmus University Medical Centre, Rotterdam, The Netherlands
  1. Correspondence to Mira S Staphorst; mstaphorst{at}gmail.com

Abstract

Objective The evaluation of discomfort in paediatric research is scarcely evidence-based. In this study, we make a start in describing children's self-reported discomfort during common medical research procedures and compare this with discomfort during dental check-ups which can be considered as a reference level of a ‘minimal discomfort’ medical procedure. We exploratory study whether there are associations between age, anxiety-proneness, gender, medical condition, previous experiences and discomfort. We also describe children's suggestions for reducing discomfort.

Design Cross-sectional descriptive study.

Setting Paediatric research at three academic hospitals.

Patients 357 children with and without illnesses (8–18 years, mean=10.6 years) were enrolled: 307 from paediatric research studies and 50 from dental care.

Main outcome measures We measured various generic forms of discomfort (nervousness, annoyance, pain, fright, boredom, tiredness) due to six common research procedures: buccal swabs, MRI scans, pulmonary function tests, skin prick tests, ultrasound imaging and venepunctures.

Results Most children reported limited discomfort during the research procedures (means: 1–2.6 on a scale from 1 to 5). Compared with dental check-ups, buccal swab tests, skin prick tests and ultrasound imaging were less discomforting, while MRI scans, venepunctures and pulmonary function tests caused a similar degree of discomfort. 60.3% of the children suggested providing distraction by showing movies to reduce discomfort. The exploratory analyses suggested a positive association between anxiety-proneness and discomfort.

Conclusions The findings of this study support the acceptability of participation of children in the studied research procedures, which stimulates evidence-based research practice. Furthermore, the present study can be considered as a first step in providing benchmarks for discomfort of procedures in paediatric research.

  • child
  • discomfort
  • ethics
  • research participation
  • self report

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-016077

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    Footnotes

    • Contributors MS acted on behalf of the BURDEN-group. All remaining authors are the BURDEN-group. MS conceptualised and designed this study, carried out the data collection, drafted the initial manuscript and approved the final manuscript as submitted. JH, JP and JBG conceptualised and designed this study, supervised the study, reviewed and revised the manuscript and approved the final manuscript as submitted. RT assisted with the statistical analyses of the data, reviewed and revised the manuscript, and approved the final manuscript as submitted. SV and JVB conceptualised and designed this study, reviewed and revised the manuscript and approved the final manuscript as submitted. MAB, MB, IB, KD, EH, VJ, KJ, JJ, AK, MK, JO, MP, LR, LdR, GHT, HT assisted with acquisition of data, reviewed and revised the manuscript and approved the final manuscript as submitted.

    • Funding This work was supported by ZonMw (The Netherlands Organization for Health Research and Development), grant number 113203202.

    • Competing interests None declared.

    • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

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

    • Data sharing statement The dataset is available by contacting the corresponding author.