ArticleCancers2021
Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study.
Article in Cancers, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Patients' experiences of the path to sarcoma diagnosis: a qualitative systematic review and thematic synthesis.BMJ open · 2026Pooled 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
- Diagnostic Intervals in Children, Adolescents and Young Adults with Primary Bone Sarcoma: A Systematic Review.Cancers · 2026Review
- Addressing and supporting the unmet needs of sarcoma survivors: a qualitative study.International journal of qualitative studies on health and well-being · 2025Article
- '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
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Diagnostic Delay in Soft Tissue Sarcomas: A Review.Cancers · 2025Review
- "Lack" and "Finally": A Qualitative Analysis of Barriers and Facilitators in Rare Disease Healthcare.International journal of environmental research and public health · 2025Article
- Article
- Availability and Access to Orphan Drugs for Rare Cancers in Bulgaria: Analysis of Delays and Public Expenditures.Cancers · 2024Article
- Ethical considerations for nurses working in rare cancer care: Focus on sarcoma.Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2024Article
- Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.Cancers · 2023Article
- 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
- Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.Journal of the National Cancer Institute · 2022Article
- Article
- Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases.Orphanet journal of rare diseases · 2022Article
- 'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients.Health and quality of life outcomes · 2022Observational
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
The aim of this study was to explore the experience of rare cancer patients with the healthcare system and examine differences between age groups (adolescents and young adults (AYA, 18-39 years), older adults (OA, 40-69 years) and elderly (≥70 years)). Dutch sarcoma patients, 2-10 years after diagnosis, completed a questionnaire on their experience with the healthcare system, satisfaction with care, information needs, patient and diagnostic intervals (first symptom to first doctor's visit and first doctor's visit to diagnosis, respectively) and received supportive care. In total, 1099 patients completed the questionnaire (response rate 58%): 186 AYAs, 748 OAs and 165 elderly. Many survivors experienced insufficient medical and non-medical guidance (32% and 38%), although satisfaction with care was rated good to excellent by 94%. Both patient and diagnostic intervals were >1 month for over half of the participants and information needs were largely met (97%). AYAs had the longest patient and diagnostic intervals, experienced the greatest lack of (non-)medical guidance, had more desire for patient support groups and used supportive care most often. This nationwide study among sarcoma survivors showed that healthcare experiences differ per age group and identified needs related to the rarity of these tumors, such as improvements concerning (non-)medical guidance and diagnostic intervals.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.