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This study reports how parents and young people who had experience of febrile neutropenia, a common complication of chemotherapy for cancer, improved the design of a trial to inform the management of this condition. Five parents, an unrelated young person who had completed leukaemia treatment, and three clinician-researchers contributed. The group formed after an invitation via social media and met via video conference. Many participants were from an existing childhood cancer parent-involvement group. The initial part of the meeting was a description of the study being designed and the scientific background for it. This then led to questions for discussion about the importance of the topic, the views of the need for a trial, which important outcomes should be measured, and practical aspects which would make it easier or more difficult for people to take part in it. The conversation occurred across an entire afternoon, was audio and video recorded, transcribed, analysed, and checked by those involved. The fifth parent added to this via email. The discussion led to the researchers altering the proposed trial structure. Now the trial will offer to randomise each child to one of the two management methods through the whole of their anti-cancer treatment, rather than randomising the hospitals, or the child at each visit. The group felt even if people declined taking part in the study in the first weeks of diagnosis, their views may change and they should be allowed to consent later. They also proposed methods of collecting patient and family important data, enriching the medical information gained in the study. Active follow-up, negotiated for each individual family, was also suggested. This study showed us that trials improving the management of febrile neutropenia for children and young people who are undergoing anti-cancer treatments should consider individual-patient randomisation, make sure the collection of ‘quality of life’ and ‘experience of care’ aspects use digital and paper methods, and the engagement of families in shared decision making around management choices is highly desirable. It re-enforced the need to ensure adequate supportive information is available and accessible to all patients on studies, regardless of background, geographical location, or age, and deepened the researchers understanding of the experience of those who have had febrile neutropenia.

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This page is a summary of: What do families want to improve in the management of paediatric febrile neutropenia during anti-cancer treatment? Report of a patient/public involvement group, BMJ Paediatrics Open, February 2019, BMJ, DOI: 10.1136/bmjpo-2018-000398.
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