Parent’s perspectives of the pathway to diagnosis of childhood cancer: a matter of diagnostic triage

Abstract

Background Early diagnosis is crucial for the treatment of childhood cancer as it in some cases can prevent progression of disease and improve prognoses. However, childhood cancer can be difficult to diagnose and barriers to early diagnosis are multifactorial. New knowledge about factors influencing the pathway to diagnosis contribute to a deeper understanding of the mechanisms that influence this time span. Qualitative research in the field is sparse but can be expected to lead to additional useful insights that could contribute to efforts shorten time to diagnosis. The purpose of this study was to explore parents’ experiences of the pathway to diagnosis in the time between their noticing bodily or behavioural changes and their child’s diagnosis. Methods The study is a qualitative interview study carried out in large Danish hospital. Thirty-two interviews with a total of 46 parents of children with cancer were included for analysis. The children were diagnosed with haematological cancers (n = 17), solid tumours (n = 9) or brain tumours (n = 6). Data were analysed applying the theoretical model of pathways to treatment and an inductive-deductive approach. A revised ‘diagnostic triage’ model was developed and validated by member checking. Results The pathway to diagnosis was influenced by various factors which we present as consistent parts of a new diagnostic triage model. Each factor impacts the level of urgency assigned to bodily and behavioural changes by parents, general practitioners and specialists. The model of diagnostic triage was developed and validated to understand mechanisms influencing time from the point parents notice changes in their child to diagnosis. The model identifies dynamic movement between parental triage in everyday life and professional triage in a healthcare system, both affecting appraisal and case escalation according to: 1) the nature of bodily and behavioural changes, 2) parental intuition, 3) social relations, 4) professional-child-parent interaction, and 5) specialist-child-parent interaction. Conclusions Diagnostic triage is a model which explains mechanisms that shape the pathway to diagnosis. It is a contribution aimed at supporting the clinical diagnostic process, that ultimately could ensure more timely testing, referral and diagnosis, and also a novel theoretical framework for future research on diagnostic pathways.

Type of cancer and complementary and alternative medicine are determinant factors for the patient delay experienced by children with cancer: A study in West Java, Indonesia

“…Parental delays in childhood cancer are closely related to parental health‐seeking behavior. Parents are the individuals who first notice a physical or behavioral change in their children and initiate the diagnostic childhood pathway, so their perspective and behavior, especially in health‐seeking behavior, will affect the interval of diagnostic triage 58 . Our findings from the theoretical framework described the concept of the determinant of parental use of CAM, which includes vague initial childhood cancer symptoms, parental seeking behavior, CAM availability/accessibility, and barrier of healthcare facilities, could be classified as internal and external factors 59 .…”

Socioeconomic position and prediagnostic health care contacts in children with cancer in Denmark: a nationwide register study

“…Indeed research has shown that SEP of the parents may influence the clinicians’ approach; how they involve the parents in the clinical setting [ 16 ], and which themes are addressed in the consultation [ 45 ]. The doctor-patient/parent relationship in the prediagnostic period of childhood cancer has been explored in qualitative studies [ 13 , 16 , 45 – 47 ] including parents with different level of SEP describing differences in proactive and strategic roles in the process of obtaining a diagnosis [ 13 , 46 , 47 ]. A recent Danish interview study ( N = 46) described this as a mechanism where some parents take advantage of their health-relevant cultural capital [ 48 ] in the process of obtaining a diagnosis.…”

“…The strategic approach enabled them to negotiate with their GP, e.g. about further diagnostic tests and thereby speeding up the process of obtaining a diagnosis [ 47 ]. As health-relevant cultural capital is related to the SEP [ 48 ] of individuals, this mechanism may contribute to explaining our findings that children with parents of short education, looser affiliation to the work market and with depression have a higher risk of frequent contacts prior to diagnosis.…”

Assessing and investigating children with suspected bone and abdominal tumours: an e-Delphi consensus process

“…Overall, there was strong consensus regarding the best practice of conducting the consultation, taking into account parental concern or instinct which has been shown to be an important factor in diagnosis of childhood cancer 19 20. Referral pathways for childhood cancers include an urgent referral process for suspected cancer but has been subject to criticism.…”