Disentangling trust of patients with rare cancer in their healthcare professionals and the healthcare system: a qualitative interview study

Purpose: Patients with a rare cancer face challenges, e.g., delayed diagnosis, that may affect trust in the healthcare system and the healthcare professionals (HCPs) involved. This study aimed to explore trust of patients with a rare cancer in their HCPs and the healthcare system. Methods: Semi-structured interviews were conducted with 20 purposively sampled patients with a rare cancer. The interview guide included topics related to trust, including level, development, barriers and facilitators, importance, and trust dimensions. Thematic analysis was conducted with use of Atlas.ti. Results: The mean age of patients was 50 years, 60% were female, and 70% were highly educated. Three themes were constructed: (1) “Confirmed expertise is a prerequisite of trust.” Patients need confirmation of their HCPs’ expertise, as it could not be assumed due to the rarity of their cancer; (2) “Trust depends on the adequacy of information and how it is provided.” Limited information about rare cancer reduced patients’ trust in health care, whereas interpersonal trust was mainly affected by how HCPs provided information; and (3) “Trust is built on properly coordinated and supportive care.” Proper organization and cooperation within and between hospitals, and integration of supportive care, enhanced trust. Conclusion: Patients with a rare cancer experience challenges that influence trust in HCPs and the healthcare system. Further research should examine trust among subgroups of patients with a rare cancer, to enable development of tailored interventions. Implications for Cancer Survivors: HCPs may improve trust by focusing on expertise, effective information provision, proper coordination of care, and provision of adequate supportive care.