Abstract
We 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). Patients 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 70months (12-374). Consistency checks were performed with Cohen's kappa statistic for intra-rater agreement. The 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). Local 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.
Highlights
Pigmented villonodular synovitis (PVNS) is a rare benign but locally aggressive giant cell tumour deriving from synovium, either localized giant cell tumour of tendon sheath (GCT-TS) or diffuse-type giant cell tumour (DtGCT) [1, 2]
The aim of this study was to investigate whether we could use crowdsourcing via Facebook and online surveys for medical research purposes on PVNS
We set out to correlate functional outcome and quality of life (QOL) to patient characteristics, surgical procedures and oncological outcome in patients with PVNS who were enrolled in a patient community on Facebook
Summary
Pigmented villonodular synovitis (PVNS) is a rare benign but locally aggressive giant cell tumour deriving from synovium, either localized giant cell tumour of tendon sheath (GCT-TS) or diffuse-type giant cell tumour (DtGCT) [1, 2]. Rare diseases, including PVNS, are difficult to investigate as published case series are generally small, of retrospective nature and often describe research periods of several decades with a short follow-up duration. These studies only provide levels of evidence. Open online surveys may be more attractive and quick to complete for the modern patient than conventional questionnaires on paper via regular mail
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