ArticleThe oncologist2025
The impact of surgery on patients with Von Hippel-Lindau-associated tumors: an international patient survey.
Article in The oncologist, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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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.
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Who cites it
2 citing papers in PubMed.
- Clinical outcomes of HIF-2α inhibition in Von Hippel-Lindau disease: a multicenter real-world study.The oncologist · 2026Article
- Recent advances in etiology and treatment of von Hippel-Lindau Disease (VHLD).Cancer metastasis reviews · 2026Review
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Authors and funding
6 authors.
Funding
Abstract
backgroundVon Hippel-Lindau syndrome (VHL) is a rare hereditary neoplastic disorder caused by mutations in the VHL gene. Treatment options for patients are limited to multiple surgeries dispersed between regular scans, watchful waiting, and treatments that preserve organ function.
methodsAn international, cross-sectional survey comprising patients in the United States (USA), Canada (CA), the United Kingdom (UK), France (FR), and Germany (DE) was conducted. Patients were recruited via the VHL Alliance; data were collected between Dec 2021 and May 2022. For inclusion, patients must have renal cell carcinoma, pancreatic neuroendocrine tumors, and/or central nervous system hemangioblastoma.
resultsIn all, 220 patients (68.2% female, median age 40.0, median disease duration 15.8 years) in the USA (n = 108), CA (n = 37), the UK (n = 21), FR (n = 3), and DE (n = 51) completed the study. In this sample, n = 205 (93.2%) patients had experienced surgery; n = 171 (77.7%) had experienced multiple surgeries (median number of surgeries, 4.0); 166 (n = 75.5%) patients recorded data on their most recent surgery. Of these, patients reported that their most recent surgery worsened (scored 1-3) their fatigue (51.8%, n = 86), mental health (51.2%, n = 85), and ability to go about daily life (45.2%, n = 75). Approximately, 47.3% (n = 104) of patients selected reducing the number of surgeries as a top treatment goal, whereas 73% (n = 161) of patients indicated they would prefer to take a pill which would possibly delay the time until surgery.
conclusionSurgery negatively impacts the lives of patients, leading to a worsening in their fatigue, mental health, and ability to go about daily life.
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