ArticleLeukemia & lymphoma2020
The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease.
Article in Leukemia & lymphoma, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.
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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.
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Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it, 16 citations in OpenAlex.
- Psychological Distress in Patients With Asbestos-Related Diseases and Their Families: A Systematic Literature Review.Psycho-oncology · 2025Pooled it
- Systematic Review and Meta-Analysis of Prevalence of Depression Among Caregivers of Cancer Patients.Frontiers in psychiatry · 2022Pooled it
- 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
- Article
- Post-Acute Transition to Home With Supportive Care (PATHS): A Novel Nurse Practitioner-Led Telehealth Intervention to Improve End-of-Life Oncology Care.Journal of pain and symptom management · 2025Article
- Anxiety and depression in patients with histiocytic neoplasms and their associated clinical features.Blood advances · 2025Observational
- Communication between Caregivers of Adults with Cancer and Healthcare Professionals: a Review of Communication Experiences, Associated Factors, Outcomes, and Interventions.Current oncology reports · 2024Review
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms.EClinicalMedicine · 2022Article
- Valuing the "Burden" and Impact of Rare Diseases: A Scoping Review.Frontiers in pharmacology · 2022Article
- The Supportive Care Needs of Regional and Remote Cancer Caregivers.Current oncology (Toronto, Ont.) · 2021Article
- Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea.International journal of environmental research and public health · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 2 institutions in 1 country.
Funding
Abstract
Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.
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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.