Understanding missed opportunities for more timely diagnosis of brain cancer – what can we learn from the BRACED qualitative interview study with adult glioma patients?

Abstract

BACKGROUND BRACED (The BRAin Cancer Early Detection study) is a qualitative study of patient perspectives on factors affecting timely diagnosis of primary brain tumours. Patient, doctor and health-care system-related factors can all contribute towards prolonged time to cancer diagnosis, impacting on patient experience, morbidity and mortality.

AIM To develop a richer understanding of adult glioma patients’ experiences and attributions of symptoms, and their routes to diagnosis.

METHODS In-depth qualitative interviews with 20 patients with early analysis completed; a second phase of interviews is underway with another 20 patients, for a detailed exploration of early emerging themes.

RESULTS First phase participants were 14 men and 6 women, aged 22 - 76 (median 63) years. Participants reported varied routes and times to diagnosis, often involving more than one healthcare professional. Factors contributing to prolonged times to diagnosis were explored in analysis of patient narratives relating to initial assessment, diagnostic test performance and interpretation, and follow-up and coordination. There was evidence of challenges in presenting multiple and subtle symptoms in the context of a routine GP appointment. Some participants felt that their diagnosis may have been delayed in primary care by non-urgent referral to specialist care or ‘false’ reassurance following normal test results. Prolonged time to diagnosis was also suspected where: no CT or MRI scan was performed on emergency presentation despite being suggested by a clinician; a neurologist was called but did not see the patient prior to discharge; delays in reporting scan results occurred; or there was an apparent absence of ‘safety-netting’ advice to support patients in their ongoing appraisal of symptoms.

DISCUSSION Early findings identify a number of factors that may contribute to prolonged time to diagnosis after presentation, which could be minimised by improving guidance for both patients and clinicians.