Keywords: Cancer diagnosis; Primary care; Diagnostic uncertainty; Patient experience; Grounded theory

Background:

Patients undergoing cancer diagnosis in primary care often face prolonged uncertainty and fragmented diagnostic processes. While diagnostic delay has been widely studied, less is known about how patients relate to their symptoms, their emotions, and physicians’ responses during the pre-diagnostic phase.

Research questions:

How do patients respond to diagnostic uncertainty before a cancer diagnosis in primary care?
How do they navigate healthcare systems, relationships with physicians, and their own emotional reactions?

Method:

Classic grounded theory was applied to 85 patient narratives from seven European countries (Greece, Italy, Latvia, North Macedonia, Spain, Sweden, Türkiye). Data were analysed using constant comparison whilst memoing and sorting to identify a core process explaining patient behaviour before diagnosis.

Results:

Balancing Responsiveness explain how patients strive to remain stable while responding to uncertainty in three interrelated ways:
Forced self-managing, where patients are compelled to coordinate care, manage referrals, delays, and system barriers;
Diagnostic confusion, where normalisation, dismissal, and misinterpretation of symptoms by both patients and physicians lead to cycles of reassurance and renewed self-diagnosing;
Emotional meaning-making, where fear, denial, guilt, and intuition both delay action and, at times, trigger persistence.
Patients adapted their language, behaviour, and emotional expression to fit perceived expectations of clinicians, often calibrating their performance to avoid dismissal while seeking clarity.

Conclusions:

Balancing Responsiveness highlights the central role of relational, emotional, and organisational dynamics in cancer diagnosis and offers a patient-centred explanation of how people cope with and act within diagnostic uncertainty in primary care. Patients’ diagnostic trajectories were shaped by a continuous balancing between action and restraint while navigating uncertainty, emotions, and complex healthcare systems. When systems or relationships failed, patients were forced into managing their own diagnostic process, acquiring situational expertise at considerable emotional cost.

Points for discussion:

How can primary care recognise patients’ adaptive work during diagnostic uncertainty?

How can emotional signals be better understood as part of the diagnostic process?

How can patient experiences and knowledge be used to improve diagnostic work?