‘Shouting from the roof tops’: a qualitative study of how children with leukaemia are diagnosed in primary care

Abstract

ObjectivesTo investigate the prehospital presentation of paediatric leukaemia and identify the disease and non-disease related factors which facilitate or impede diagnosis.DesignThematic analysis of qualitative semistructured interviews.SettingOne tertiary referral centre in Southern England.Participants21 parents and 9 general practitioners (GPs) of 18 children (<18-year-old) with a new diagnosis of acute leukaemia.ResultsThe 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.ConclusionsThe 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.

Safety netting for primary care: evidence from a literature review

“…Over half of the citations were classed as expert opinion including 20 educational articles 5,6,8,9,14,15,[19][20][21][22][23][24][25][26][27][28][29][30][31][32] and five editorials or commentaries. 13,[33][34][35][36] Twelve citations were studies using qualitative methods including five interview methods, [37][38][39][40][41] two questionnaire methods, 7,42 and five mixedmethod studies. [43][44][45][46][47] Of the remaining…”

“…Of the included citations, 24 provided advice on when safety netting should be used. 5,7,8,13,16,20,[24][25][26][30][31][32][33][36][37][38]40,42,44,45,49,52,54,55 It was recommended when there is diagnostic uncertainty and the differential diagnosis includes serious illness or illness that may progress rapidly. The MDU states that 'safety netting is important where a patient may have risk factors for a specific disease or where specific complications are recognised as part of the illness'.…”

Utilisation of primary care before a childhood cancer diagnosis: do socioeconomic factors matter?: A Danish nationwide population-based matched cohort study

“… 31–34 A study from the UK reported that the GP–parent relationship had significant impact on the process of obtaining a paediatric leukaemia diagnosis. 34 For example, the GP’s concerns and actions were partly shaped by how anxious she/he estimated the parents to be. The GP’s initial perception of a parent as being a ‘worrier’ or too sensitive could influence the way the parents’ concerns are dealt with; ‘worriers’ are generally taken less seriously.…”

Presentation of childhood cancers to a paediatric shared care unit

“…Reducing delay in diagnosis is also the focus of public health awareness campaigns 7. Recent published literature has focused on primary care and tertiary care populations and how cancer diagnoses are reached in those settings 3 8…”