Frontiers in Psychology
Healthcare professionals' perspectives on diagnostic delay in rare cancers and options for patient support: a qualitative interview study
By Femke Krause, Liza A. Hoveling, R. Wilbrink and 4 others.
Abstract
Purpose: Delayed diagnosis in rare cancers can lead to disease progression, limited treatment options, and psychological distress, resulting in poorer quality of life and disability. We explored healthcare professionals' (HCPs) perceptions of diagnostic delay in rare cancers and options for patient support. Materials and methods Semi-structured interviews were conducted with 20 HCPs involved in rare cancer care. Interview topics covered diagnostic challenges, causes of delays, consequences for patients, and support options. Data were analyzed thematically. Results Three main themes emerged: (1) Time, intuition, and a safety-net fill the gap when signs are present, but not obvious . HCPs balance clinical intuition with safety-netting to avoid mis-, under-, or overdiagnosis when symptoms are vague, (2) Balancing speed and care in a fast-paced, complex diagnostic phase . Once cancer is suspected, the trajectory accelerates, yet systemic delays persist, and (3) Striving for precision: the paradox of reaching a diagnosis . While HCPs pursue diagnostic clarity, uncertainty often causes patients more distress than the diagnosis. Conclusion HCPs manage the diagnostic trajectory of rare cancers through clinical judgment, safety-netting, and clear communication. As systemic delays and patient distress remain, early psychosocial support may help. Future research should define diagnostic delay, assess its impact, and identify support options.



