ArticleJournal of cancer survivorship : research and practice2025
Disentangling trust of patients with rare cancer in their healthcare professionals and the healthcare system: a qualitative interview study.
Article in Journal of cancer survivorship : research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Addressing cancer survivors' information needs and satisfaction: a systematic review of potential intervention components for survivors with a rare cancer type.Orphanet journal of rare diseases · 2024Pooled it
- "The uncharted waters of completely not knowing what's next": rare cancer patients' experiences regarding navigating uncertainty.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- 'I knew I had to drive my own bus': perspectives of patients and healthcare professionals on improving information provision to rare cancer survivors.Journal of cancer survivorship : research and practice · 2025Article
- Medical Mistrust in Online Cancer Communities: A Large-Scale Analysis Across 10 Cancer Entities.Psycho-oncology · 2025Article
- Trust in healthcare and perceived discrimination in Sweden: a fixed effects analysis of individual heterogeneity and discriminatory accuracy.Frontiers in public health · 2025Article
- Racial discrimination and health-care system trust among American adults with and without cancer.Journal of the National Cancer Institute · 2024Article
- Prevalence of cancer survivors in the United States.Journal of the National Cancer Institute · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposePatients 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.
methodsSemi-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.
resultsThe 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.
conclusionPatients 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.
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