Background This study reports how parents and young people who had an experience of
febrile neutropenia (FN) improved the design of a trial to inform the management of this condition. Five parents, a young person who had completed treatment and three clinician-researchers contributed.
Methods The group was formed after an invitation on social media and met via video conference. Many participants were from an existing childhood-cancer parent-involvement group. The initial questions asked during discussion were about the importance of the topic, the views on the need for a trial, which important outcomes should be measured and the practical aspects which would make it easier or more difficult for people to take part in it. The conversation occurred for an entire afternoon, was audio and video recorded, transcribed, analysed and checked by those involved. The fifth parent added to this via email.
Results The group altered the trial structure by proposing randomising of each child to one of the two management methods through the whole of their anti-cancer treatment, rather than randomising the study sites or the child at each visit. They felt that even if people declined taking part in the study in the first weeks of diagnosis, their views might change and they should be allowed to consent later. They also proposed methods of collecting important patient and family data, enriching the medical information gained in the study. Active follow-up, negotiated for each individual family, was also suggested.
Conclusion Trials for improving the management of FN in children and young people who are undergoing anti-cancer treatments should consider individual-patient randomisation, collection of ‘quality of life’ and ‘experience of care’ aspects using digital and paper-based methods, engage families in shared decision-making about management options and ensure adequate supportive information is available and accessible to all patients regardless of background, geographical location or age.
- data collection
- infectious diseases
- patient perspective
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Contributors This study was conceived by BP and SD, and developed with the assistance of JM. The audio was transcribed and analysed by BP initially with input from JM and SD. BP drafted the paper, and was critically revised and developed by JM and SD. The PPI group read and agreed with the content of the paper. The authors very gratefully acknowledge their input into this specific work.
Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. BP was supported by an NIHR Post-doctoral fellowship: grant number PDF2014-10872. The views expressed inthis publication are those of the authors and not necessarily those of the NHS,the National Institute for Health Research or the Department of Health andSocial Care (DHCS).
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Patient consent for publication Not required.
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