Healthcare professionals' perspectives on diagnostic delay in rare cancers and options for patient support: a qualitative interview study.
5 affiliations
- 1Department of Research and Development, Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland), Utrecht, Netherlands.
- 2Department of General Practice and Nursing Science, UMC Utrecht, Utrecht, Netherlands.
- 3Department of Medical Oncology, University Medical Center Utrecht, Utrecht, Netherlands.
- 4Department of Medical Psychology, Amsterdam University Medical Center, Location Vrije Universiteit, Amsterdam, Netherlands.
- 5Cancer Treatment and Quality of Life, Cancer Center Amsterdam, Amsterdam, Netherlands.
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.
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BibTeX
@article{krause2026healthcare,
title = {{Healthcare professionals' perspectives on diagnostic delay in rare cancers and options for patient support: a qualitative interview study.}},
author = {Femke Krause and Liza A Hoveling and Rosalie Wilbrink and Denise Abbel and Kristel M van Asselt and Filip de Vos and Saskia F A Duijts},
journal = {Frontiers in psychology},
year = {2026},
month = oct,
doi = {10.3389/fpsyg.2026.1945741},
url = {https://europepmc.org/article/MED/43011747},
note = {CC BY},
}
RIS
TY - JOUR
TI - Healthcare professionals' perspectives on diagnostic delay in rare cancers and options for patient support: a qualitative interview study.
AU - Femke Krause
AU - Liza A Hoveling
AU - Rosalie Wilbrink
AU - Denise Abbel
AU - Kristel M van Asselt
AU - Filip de Vos
AU - Saskia F A Duijts
PY - 2026
DA - 2026/10/09
JO - Frontiers in psychology
DO - 10.3389/fpsyg.2026.1945741
UR - https://europepmc.org/article/MED/43011747
AB - 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.
SN - 1664-1078
ER -