Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients

Abstract

Purpose 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). Methods 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), hipdisability 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. Results 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 Conclusion Local recurrence-risk was higher for diffusetype 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.

The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

“…The presumed definition of crowdsourcing is the practice of obtaining services, ideas, or content by collecting contributions from a comprehensive group from an online community rather than from traditional data suppliers [ 9 ]. However, the exact definition for crowdsourcing remains controversial, as 40 definitions originating from 32 unique articles, published between 2006 and 2011, were described by Estellés-Arolas [ 22 ].…”

“…Although TGCT is not considered lethal, this tumor is hypothesized to have major impact on daily living. Especially diffuse disease is notorious for its negative influence on both local recurrence risk and functional outcome [ 9 ].…”

IT-based Psychosocial Distress Screening in Patients with Sarcoma and Parental Caregivers via Disease-specific Online Social Media Communities

“…Substantiating this hypothesis in the field of orthopedic oncology, van der Heijden et al investigated outcomes and quality of life in patients with pigmented villonodular synovitis via Facebook, using patient-reported outcome measures (24). That study enrolled 293 patients within a 16-month study period.…”

“…To some extent this might be due to the higher mortality of OS or ES compared to more common malignancies such as breast or prostate cancer. In contrast, potentially dissatisfied patients or patients with high psychosocial distress levels may be more likely to enroll in a patient community on Facebook and participate in an online survey regarding outcomes and quality of life (24). We recorded relevant psychosocial distress levels in most parents of patients with OS and ES (93.8% and 97.4%, respectively).…”

Limb Amputation after Multiple Treatments of Tenosynovial Giant Cell Tumour: Series of 4 Dutch Cases

“…Once all treatments fail or severe complications occur, limb amputation may become unavoidable. To our knowledge, current literature lacks reports of limb amputation in TGCT patients, but patient groups often discuss the possibility on online fora (“PVNS is pants” closed Facebook community; https://www.facebook.com/groups/91851410592/?ref=ts&fref=ts) [9]. To underline potential aggressiveness of TGCT, four patient history scenarios are described.…”