ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2019
Desmoid fibromatosis through the patients' eyes: time to change the focus and organisation of care?
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04289077 (The Evaluation of Health-related Quality of Life Issues Experienced by Patients With Desmoid-type Fibromatosis), which is not on this map. Cited by 29 papers.
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.
The Evaluation of Health-related Quality of Life Issues Experienced by Patients With Desmoid-type Fibromatosis
Who cites it
29 citing papers in PubMed, 48 citations in OpenAlex.
- GOunder/Desmoid Tumor Research Foundation DEsmoid Symptom/Impact Scale (GODDESSQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Trial
- Nirogacestat, a γ-Secretase Inhibitor for Desmoid Tumors.The New England journal of medicine · 2023Trial
- A phase II trial of weekly nab-paclitaxel for progressive and symptomatic desmoid tumors.Nature communications · 2022Trial
- Expert opinion document on the management of desmoid tumours in adult patients in Spain.Clinical & translational oncology : official publication of the Federation of Spanish Oncology Societies and of the National Cancer Institute of Mexico · 2026Article
- Axillary desmoid-type fibromatosis: a rare clinical presentation, histopathological correlation, and literature review.BMC surgery · 2026Review
- Impact of Anatomical Localization on Systemic Inflammatory Markers and Immune Checkpoint CD47 in Desmoid Tumors.Journal of clinical medicine · 2026Article
- Real-World Characterization and Treatment Patterns of Patients with Desmoid Tumors at an Academic Center in the United States.Cancer research communications · 2026Article
- The Health-Related Quality of Life of German Desmoid Patients: Results from the PROSa-DES and PROSa Study.Cancers · 2026Article
- Evaluating the impact of surgical resection on desmoid tumour growth: a retrospective analysis from the National Cancer Centre Singapore.Frontiers in surgery · 2026Article
- Exploring Clinical Studies and the FDA Adverse Event Reporting System (FAERS) Database for nirogacestat-related Adverse Events.Therapeutic innovation & regulatory science · 2025Article
- The impact of desmoid tumors: insights from the Desmoid Tumor Research Foundation Natural History Study, 2017-2023.Orphanet journal of rare diseases · 2025Review
- Thematic Analysis of Clinician Documentation Surrounding Treatment Discussions and Decision-Making in Patients With Desmoid Tumors.Cancer medicine · 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
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- A pilot study on the neurocognitive effect of sorafenib on patients with desmoid tumours: the SORA-COG study.Ecancermedicalscience · 2025Article
- A real-world study on the clinicopathological profile, treatment outcomes and health-related quality of life, anxiety and depression among patients with desmoid tumor at two tertiary care centers in India.Frontiers in oncology · 2024Article
- Capturing Patient Voice to Improve Outcomes That Matter to Patients with Desmoid Tumor.Cancer management and research · 2024Review
- Desmoid Tumors: A Comprehensive Review.Advances in therapy · 2023Review
- Physical symptom burden in patients with desmoid-type fibromatosis and its impact on health-related quality of life and healthcare use.Cancer medicine · 2023Article
- Desmoid is not a sarcoma; reply to Sachdev et al.EClinicalMedicine · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeDesmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care.
methodsTwenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Two focus groups and 13 interviews (males 12, females 15; mean age at study 39.5 years) explored health-related quality of life issues and experiences of healthcare. Thematic content was analysed.
resultsDiscussions revealed four key themes (diagnostic pathway; treatment pathway; living with DF; supportive care). Diagnostic delay resulted from lack of recognition by patients and healthcare professionals. Some patients received an initial diagnosis of cancer, causing significant distress. Treatment decisions were challenging, and patients experienced uncertainty among clinicians about optimal therapies. Side-effects of treatment were severe, including fatigue, nausea, anorexia, low libido and depression. Pain was the most debilitating symptom and dependency on painkillers was a significant concern. Functional limitation and restricted mobility frequently affected daily activities. Patients experienced difficulty accomplishing their role in society; relationship problems, caring for children, employment and financial difficulties. Social isolation and lack of understanding were common. The psychological impact of this "life-changing and life-long" condition was profound. All patients requested knowledgeable healthcare professionals, more information, continuity of care and peer support.
conclusionsDF patients face complex physical, psychological and practical challenges. Comprehensive care services are needed. Increasing awareness may help to improve diagnostic pathways and overall patient experience.
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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.