What do families want to improve in the management of paediatric febrile neutropenia during anti-cancer treatment? Report of a patient/public involvement group

Abstract

BackgroundThis study reports how parents and young people who had an experience offebrile 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.MethodsThe 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.ResultsThe 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.ConclusionTrials 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.

Risk stratification in children with cancer and febrile neutropenia: A national, prospective, multicentre validation of nine clinical decision rules

“…Various pathways for reduced-intensity treatment of children with low-risk FN have been explored, ranging from entirely homebased management to early discharge after a period of in-hospital observation with either oral or intravenous antibiotics [4,46]. While these options have been shown to be safe in randomised trials, studies using more stringent risk assessment demonstrate lower rates of treatment failure [4].…”

Short-course antibiotics for chemotherapy-induced febrile neutropaenia: retrospective cohort study

“…When deciding the optimal management strategy in paediatric practice, in addition to medical outcomes and cost implications, it is important to incorporate family/parental preferences. A survey of parental views showed that >75% of parents preferred at least some of the treatment to be hospital based,16 with focus group studies confirming a general preference for admissions to be as short as possible without compromising safety 17 18. Our strategy acknowledges this preference as all patients stay in hospital for at least 48 hours.…”

Towards evidence-based medicine for paediatricians

“…Parents report 30% was fine, some even as much as 50%. For them, the 50% chance of not having to come back was far more important 1. The reverse may be true when it comes to medication safety; we will accept that a drug may cause an adverse reaction in 1%–2% and describe it as safe; ‘normal’ people may read safe as ‘doesn’t cause harm’.…”