Observational studyInternational orthopaedics2016
Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients.
Observational study in International orthopaedics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Pooled it
- Pexidartinib improves physical functioning and stiffness in patients with tenosynovial giant cell tumor: results from the ENLIVEN randomized clinical trial.Acta orthopaedica · 2021Trial
- The economic and humanistic burden of tenosynovial giant cell tumor: a targeted literature review.Future oncology (London, England) · 2025Review
- The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ).Orphanet journal of rare diseases · 2022Article
- Clinical outcomes of endoscopic synovectomy with adjuvant radiotherapy of pigmented villonodular synovitis of the hip: a case series of single center.BMC musculoskeletal disorders · 2022Article
- Immune Cell Infiltration Characteristics of Pigmented Villous Nodular Synovitis and Prediction of Potential Diagnostic Markers Based on Bioinformatics.BioMed research international · 2022Article
- Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.Journal of medical Internet research · 2021Article
- cIAP2 expression and clinical significance in pigmented villonodular synovitis.Journal of molecular histology · 2021Article
- Results of muscle strength and range of motion after total open knee synovectomy.International orthopaedics · 2020Article
- Arthroscopic synovectomy of the knee joint for rheumatoid arthritis.International orthopaedics · 2019Article
- Arthroscopic Treatment of Pigmented Villonodular Synovitis of the Hip Using Puncture Capsulotomy.Arthroscopy techniques · 2019Article
- Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.Health and quality of life outcomes · 2018Article
- Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology.JMIR cancer · 2018Article
- The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life.Interactive journal of medical research · 2018Article
- Arthroscopically-assisted mini open partial synovectomy for the treatment of localized pigmented villonodular synovitis of the knee. A retrospective comparative study with long-term follow up.International orthopaedics · 2017Article
- Limb Amputation after Multiple Treatments of Tenosynovial Giant Cell Tumour: Series of 4 Dutch Cases.Case reports in orthopedics · 2017Article
- Recurrence of giant cell tumour of bone: role of p53, cyclin D1, β-catenin and Ki67.International orthopaedics · 2016Article
- IT-based Psychosocial Distress Screening in Patients with Sarcoma and Parental CaregiversIn vivo (Athens, Greece)Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeWe aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members).
methodsPatients completed online open surveys on demographics, surgery and clinical outcomes (group 1); and patient-reported outcome measures (PROMs) including knee-injury osteoarthritis outcome score (KOOS), hip-disability osteoarthritis outcome score (HOOS), Toronto extremity salvage score (TESS) and SF-36 (group 2). Mean follow-up was 70 months (12-374). Consistency checks were performed with Cohen's kappa statistic for intra-rater agreement.
resultsThe first survey was completed by 272 patients (group 1) and 72 patients completed the second (group 2). In group 1, recurrence-rate was 58 % (69/118) after arthroscopic, 36 % (35/97) after open and 50 % (5/10) after combined synovectomy (p = 0.003). In group 2, recurrence-rate was 67 % (26/39) after arthroscopic and 51 % (17/33) after open synovectomy (p = 0.19). Recurrence-risk was increased for diffuse disease (OR = 16; 95%CI = 3.2-85; p < 0.001). Mean function and QOL did not differ after arthroscopic or open synovectomy: KOOS 49 vs. 58 (p = 0.24), HOOS 62 vs. 53 (p = 0.56), TESS 78 vs. 82 (p = 0.86), SF-36 61 vs. 66 (p = 0.41). Cohen's kappa statistic for intra-rater agreement was good to outstanding (κ = 0.68-0.95; p < 0.001).
conclusionLocal recurrence-risk was higher for diffuse-type disease and arthroscopic synovectomy. Functional outcome and QOL were comparable for both types of surgery. Gathering data via crowdsourcing seems a promising and innovative way of evaluating rare diseases including PVNS.
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