'Shouting from the roof tops': A qualitative study of how children with leukaemia are diagnosed in primary care

Abstract

Objectives: To investigate the prehospital presentation of paediatric leukaemia and identify the disease and nondisease related factors which facilitate or impede diagnosis. Design: Thematic analysis of qualitative semistructured interviews. Setting: One tertiary referral centre in Southern England. Participants: 21 parents and 9 general practitioners (GPs) of 18 children (<18-year-old) with a new diagnosis of acute leukaemia. Results: The majority of children were first seen by GPs before the characteristic signs and symptoms of leukaemia had developed. In their absence, behavioural cues such as the child becoming apathetic or 'not themselves' often triggered parents to seek medical help. Most GPs were unclear about the nature and severity of the child's presentation: then, safety netting, thorough history-taking and examination, and reliance on contextual information about the parents or from prior hospital paediatrics experience were used to manage diagnostic uncertainty. The nature of the doctor-parent relationship helped and hindered the diagnostic pathway. GPs' prior perceptions of parents as being 'sensible' or 'worriers' influenced how gravely they treated parental concerns, with 'worriers' being taken less seriously. Some parents believed GPs failed to listen to their anxieties and discounted their expert knowledge of their child. Specific delay factors included lack of continuity of GP; some GPs' reluctance to take blood from children; and some parents feeling unable to voice effectively their concerns. Conclusions: The presentation of paediatric leukaemia in primary care differs from that described in many hospital studies, with greater diversity and intermittency of symptoms, and the frequent absence of 'red flags' of serious illness. A wide range of non-disease related factors potentially delay the diagnosis of paediatric leukaemia, including tensions in the doctor-patient relationship and the doctors' cognitive biases. The identification and attempted modification of these factors may minimise diagnostic delay more successfully than raising awareness of 'red flags' of disease.