ArticleOrphanet journal of rare diseases2021
Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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Who cites it
18 citing papers in PubMed.
- "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
- Patient-driven second opinions in oncology: a review.The oncologist · 2026Review
- Shared Care Offers an Effective Framework for Managing Tagraxofusp Treatment in Blastic Plasmacytoid Dendritic Cell Neoplasm.Acta haematologica · 2026Review
- Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study.Orphanet journal of rare diseases · 2025Article
- Disentangling trust of patients with rare cancer in their healthcare professionals and the healthcare system: a qualitative interview study.Journal of cancer survivorship : research and practice · 2025Article
- Second Opinion Referrals of Cancer Patients in Japan-A Nationwide Study.Cancer science · 2025Article
- A single centre experience of patients with rare cancers referred for early phase clinical trials.BMC cancer · 2025Article
- Article
- Diagnostic trajectories of patients with rare cancer in the Netherlands: results from a nationwide cross-sectional survey.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Availability and Access to Orphan Drugs for Rare Cancers in Bulgaria: Analysis of Delays and Public Expenditures.Cancers · 2024Article
- Choreographed expansion of services results in decreased patient burden without compromise of outcomes: An assessment of the Ontario experience.Neuro-oncology practice · 2024Article
- Challenges and opportunities for sarcoma care and research in Latin America: a position paper from the LACOG sarcoma group.Lancet regional health. Americas · 2024Review
- Article
- Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study.Journal of cancer survivorship : research and practice · 2023Observational
- Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors.Journal of cancer survivorship : research and practice · 2023Article
- Geographical and spatial disparities in the incidence and survival of rare cancers in Australia.International journal of cancer · 2023Article
- The interaction of rurality and rare cancers for travel time to cancer care.The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association · 2023Article
- Establishment of Organoids From Human Epithelioid Sarcoma With the Air-Liquid Interface Organoid Cultures.Frontiers in oncology · 2022Article
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatients with rare cancers face challenges in the diagnostic and treatment phase, and in access to clinical expertise. Since studies on health care experiences of these patients in comparison to patients with more common cancers are scarce, we aimed to explore these differences.
methodsData were cross-sectionally collected among (former) adult cancer patients through a national online survey in the Netherlands (October 2019). Descriptive statistics were reported and subgroups (rare vs. common patients) were compared.
resultsIn total, 7343 patients (i.e., 1856 rare and 5487 common cancer patients) participated. Rare cancer patients were more often diagnosed and treated in different hospitals compared to common cancer patients (67% vs. 59%, p < 0.001). Rare cancer patients received treatment more often in a single hospital (60% vs. 57%, p = 0.014), but reported more negative experiences when treated in multiple hospitals than common cancer patients (14% vs. 9%, p < 0.001). They also more often received advise from their physician about the hospital to go to for a second opinion (50% vs. 36%, p < 0.001), were more likely to choose a hospital specialized in their cancer type (33% vs. 22%, p < 0.001), and were more willing to travel as long as necessary to receive specialized care than common cancer patients (55% vs. 47%, p < 0.001).
conclusionsRare and common cancer patients differ in their health care experiences. Health care for rare cancer patients can be further improved by proper referral to centers of expertise and building a clinical network specifically for rare cancers.
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