This paper is in the following e-collection/theme issue:

Orthopedics (97) Crowdsourcing and Mechanical Turks (103) Patient-Reported Outcome Measures (PROMs) (372)

Published on in Vol 7, No 1 (2018): Jan-Jun

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/9325, first published .
The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

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

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

Authors of this article:

Monique Josephine Mastboom1 Author Orcid Image ;   Rosa Planje1 Author Orcid Image ;   Michiel Adreanus van de Sande1 Author Orcid Image
Article Authors Cited by (42) Tweetations (4) Metrics

Journals

  1. Cook N, Landskroner K, Shah B, Walda S, Weiss O, Pallapotu V. Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study. Advances in Therapy 2020;37(6):2813 View
  2. Machado V, San-Julián M. Risk factors for early osteoarthritis in tenosynovial giant cell tumour. Revista Española de Cirugía Ortopédica y Traumatología (English Edition) 2020;64(3):199 View
  3. Palmerini E, Longhi A, Donati D, Staals E. Pexidartinib for the treatment of adult patients with symptomatic tenosynovial giant cell tumor: safety and efficacy. Expert Review of Anticancer Therapy 2020;20(6):441 View
  4. Palmerini E, Longhi A, Donati D, Staals E. Advances in treatment for tenosynovial giant cell tumors. Expert Opinion on Orphan Drugs 2018;6(12):753 View
  5. Zhou L, Parmanto B. Development and Validation of a Comprehensive Well-Being Scale for People in the University Environment (Pitt Wellness Scale) Using a Crowdsourcing Approach: Cross-Sectional Study. Journal of Medical Internet Research 2020;22(4):e15075 View
  6. Mastboom M, Staals E, Verspoor F, Rueten-Budde A, Stacchiotti S, Palmerini E, Schaap G, Jutte P, Aston W, Leithner A, Dammerer D, Takeuchi A, Thio Q, Niu X, Wunder J, van de Sande M. Surgical Treatment of Localized-Type Tenosynovial Giant Cell Tumors of Large Joints. Journal of Bone and Joint Surgery 2019;101(14):1309 View
  7. Machado V, San-Julián M. Factores de riesgo para artrosis precoz en el tumor de células gigantes tenosinovial. Revista Española de Cirugía Ortopédica y Traumatología 2020;64(3):199 View
  8. Quaresma M, Portela J, Soares do Brito J. Open versus arthroscopic surgery for diffuse tenosynovial giant-cell tumours of the knee: a systematic review. EFORT Open Reviews 2020;5(6):339 View
  9. Gelderblom H, de Sande M. Pexidartinib: first approved systemic therapy for patients with tenosynovial giant cell tumor. Future Oncology 2020;16(29):2345 View
  10. Verspoor F, Mastboom M, Hannink G, van der Graaf W, van de Sande M, Schreuder H. The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function. The Bone & Joint Journal 2019;101-B(3):272 View
  11. Lin F, Ionescu-Ittu R, Pivneva I, Wynant W, Shi S, Wu E, Kwong W, Abraham J. The Economic Burden of Tenosynovial Giant Cell Tumors Among Employed Workforce in the United States. Journal of Occupational & Environmental Medicine 2021;63(4):e197 View
  12. Van De Sande M, Tap W, Gelhorn H, Ye X, Speck R, Palmerini E, Stacchiotti S, Desai J, Wagner A, Alcindor T, Ganjoo K, Martín-Broto J, Wang Q, Shuster D, Gelderblom H, Healey J. Pexidartinib improves physical functioning and stiffness in patients with tenosynovial giant cell tumor: results from the ENLIVEN randomized clinical trial. Acta Orthopaedica 2021;92(4):493 View
  13. Zhou T, Guan H, Wang L, Zhang Y, Rui M, Ma A. Health-Related Quality of Life in Patients With Different Diseases Measured With the EQ-5D-5L: A Systematic Review. Frontiers in Public Health 2021;9 View
  14. Lopez-Bastida J, Aranda-Reneo I, Rodríguez-Sánchez B, Peña-Longobardo L, Ye X, Laeis P, Fronk E, Palmerini E, Leithner A, Van de Sande M. Economic burden and health-related quality of life in tenosynovial giant-cell tumour patients in Europe: an observational disease registry. Orphanet Journal of Rare Diseases 2021;16(1) View
  15. Popping S, Kall M, Nichols B, Stempher E, Versteegh L, van de Vijver D, van Sighem A, Versteegh M, Boucher C, Delpech V, Verbon A. Quality of life among people living with HIV in England and the Netherlands: a population-based study. The Lancet Regional Health - Europe 2021;8:100177 View
  16. Miller E, Woodward A, Flinchum G, Young J, Tabor H, Halley M. Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review. Genetics in Medicine 2021 View
  17. Palmerini E, Staals E. Treatment updates on tenosynovial giant cell tumor. Current Opinion in Oncology 2022;34(4):322 View
  18. Stacchiotti S, Dürr H, Schaefer I, Woertler K, Haas R, Trama A, Caraceni A, Bajpai J, Baldi G, Bernthal N, Blay J, Boye K, Broto J, Chen W, Dei Tos P, Desai J, Emhofer S, Eriksson M, Gronchi A, Gelderblom H, Hardes J, Hartmann W, Healey J, Italiano A, Jones R, Kawai A, Leithner A, Loong H, Mascard E, Morosi C, Otten N, Palmerini E, Patel S, Reichardt P, Rubin B, Rutkowski P, Sangalli C, Schuster K, Seddon B, Shkcodra M, Staals E, Tap W, van de Rijn M, van Langevelde K, Vanhoenacker F, Wagner A, Wiltink L, Stern S, Van de Sande M, Bauer S. Best clinical management of tenosynovial giant cell tumour (TGCT): A consensus paper from the community of experts. Cancer Treatment Reviews 2023;112:102491 View
  19. Francisco R, Brasil S, Pascoal C, Jaeken J, Liddle M, Videira P, dos Reis Ferreira V. 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 2022;17(1) View
  20. Healey J, Tap W, Gelhorn H, Ye X, Speck R, Palmerini E, Stacchiotti S, Desai J, Wagner A, Alcindor T, Ganjoo K, Martín-Broto J, Wang Q, Shuster D, Gelderblom H, van de Sande M. Pexidartinib Provides Modest Pain Relief in Patients With Tenosynovial Giant Cell Tumor: Results From ENLIVEN. Clinical Orthopaedics & Related Research 2023;481(1):107 View
  21. Tap W, Healey J. Role of colony-stimulating factor 1 in the neoplastic process of tenosynovial giant cell tumor. Tumor Biology 2022;44(1):239 View
  22. Monticelli M, Francisco R, Brasil S, Marques-da-Silva D, Rijoff T, Pascoal C, Jaeken J, Videira P, dos Reis Ferreira V. Stakeholders’ views on drug development: the congenital disorders of glycosylation community perspective. Orphanet Journal of Rare Diseases 2022;17(1) View
  23. Lin F, Wilson K, Kwong W, Abraham J. Understanding the Effect of Osteoarthritis on Surgical Treatment Patterns, Healthcare Resource Utilization, and Costs Among Patients With Tenosynovial Giant Cell Tumors. JAAOS: Global Research and Reviews 2023;7(5) View
  24. Lin F, Jacqueline Kwong W, Pan I, Ye X, Dai D, Tap W. Real-World Patient Experience of Pexidartinib for Tenosynovial Giant-Cell Tumor. The Oncologist 2024;29(4):e535 View
  25. Tap W, Sharma M, Vallee M, Smith B, Sherman M, Ruiz-Soto R, de Sande M, Randall R, Bernthal N, Gelderblom H. The MOTION Study: A Randomized, Phase III Study of Vimseltinib for the Treatment of Tenosynovial Giant Cell Tumor. Future Oncology 2024;20(10):593 View
  26. Jiang Y, Sun X, Jiang M, Min H, Wang J, Fu X, Qi J, Yu Z, Zhu X, Wu Y. Impact of a mobile health intervention based on multi-theory model of health behavior change on self-management in patients with differentiated thyroid cancer: protocol for a randomized controlled trial. Frontiers in Public Health 2024;12 View
  27. Dharmani C, Fofah O, Wang E, Salas M, Wooddell M, Tu N, Tse J, Near A, Tinoco G. Real-world drug utilization and treatment patterns in patients with tenosynovial giant cell tumors in the USA. Future Oncology 2024;20(16):1079 View
  28. Gelderblom H, Bhadri V, Stacchiotti S, Bauer S, Wagner A, van de Sande M, Bernthal N, López Pousa A, Razak A, Italiano A, Ahmed M, Le Cesne A, Tinoco G, Boye K, Martín-Broto J, Palmerini E, Tafuto S, Pratap S, Powers B, Reichardt P, Casado Herráez A, Rutkowski P, Tait C, Zarins F, Harrow B, Sharma M, Ruiz-Soto R, Sherman M, Blay J, Tap W, Loong H, Brunello A, Krieg A, Algulnik M, Riedel R, Okuno S, Loggers E, Alcindor T, Ferraresi V, Serrano C, Randall R, Wilky B, Ravi V. Vimseltinib versus placebo for tenosynovial giant cell tumour (MOTION): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial. The Lancet 2024;403(10445):2709 View
  29. Sun X, Jiang Y, Wang J, Fan S, Fu X, An Z, Zhu X, Wu Y. Effects of a mobile health intervention based on a multitheoretical model of health behavior change on anxiety and depression, fear of cancer progression, and quality of life in patients with differentiated thyroid cancer: A randomized controlled trial. BMC Medicine 2024;22(1) View
  30. Lashgari R, Chen B, Ventimiglia D, Henry L, Kolevar M, Leong N, Meredith S, Packer J, Henn R. Patient-Reported Outcomes after Surgery for Pigmented Villonodular Synovitis in the Knee: A Cohort Study. The Journal of Knee Surgery 2025;38(04):180 View
  31. Wytiaz V, Siegel G, Chugh R. Emerging therapeutics in the management of tenosynovial giant cell tumor (TGCT). Expert Review of Anticancer Therapy 2024;24(12):1229 View
  32. Lu S, Cao C, Zhang W, Li J, Yang J, Huang Z, Wu Z, Liu B, Huang H, Wang H, Wang Y, Liu D, Zhang Z, Liu K, Yang G, Gong X, Dai H, Li Y, Dong E, Zhang X, Zhang Y. Peficitinib suppresses diffuse-type tenosynovial giant cell tumor by targeting TYK2 and JAK/STAT signaling. Science China Life Sciences 2025;68(3):593 View
  33. Keyhani S, Soleymanha M, Vosoughi F, Nikibakhsh A, Zadgari E, Mousavi M, LaPrade R. Recurrence of arthroscopic treatment of pigmented villonodular synovitis of the knee: A systematic review and meta‐analysis. Journal of Experimental Orthopaedics 2025;12(1) View
  34. Kisielewska K, Rutkowski P. An evaluation of vimseltinib for treatment of tenosynovial giant cell tumors. Expert Review of Anticancer Therapy 2025;25(4):327 View
  35. Xie Y, Chen C, Wu F, Peng Y, Su J, Zhao Y, Huang H, Li Z, Pei Y, Li W, He Y, Xue T, Cao C, Peng S, Zhang X, Song W. Single‐Cell Analysis Clarifies Pathological Heterogeneity in Tenosynovial Giant Cell Tumor and Identifies Biomarkers for Predicting Disease Recurrence. Advanced Science 2025;12(26) View
  36. Dai D, Pan I, Freivogel K, Ye X, Tecson K, Tap W. Patient-reported continued benefits of pexidartinib for tenosynovial giant cell tumor based on a real-world study in the United States. The Oncologist 2025;30(3) View
  37. Palmerini E, Trent J, Hornicek Jr F. Medical Management of Tenosynovial Giant Cell Tumor. Current Oncology Reports 2025;27(7):844 View
  38. Bruschi A, Staals E, Sambri A, Cevolani L, Gambarotti M, Righi A, Fiore M, Villari E, Pasini S, Pirini M, De Paolis M, Donati D. Diffuse-Type Tenosynovial Giant Cell Tumor of the Knee: Clinical Course After Anterior Open Synovectomy. Current Oncology 2025;32(6):342 View
  39. van de Sande M, Blay J, Tap W, Lee M, Kaiser E, Beaver S, Harrow B, Zeringo N, Bernthal N. The economic and humanistic burden of tenosynovial giant cell tumor: a targeted literature review. Future Oncology 2025;21(18):2385 View
  40. Dai D, Tecson K, Pan I, Ye X, Tap W. Real-world experience of patients newly initiated on pexidartinib for tenosynovial giant cell tumor. Future Oncology 2025;21(19):2515 View
  41. Wagner A, Tap W, Bauer S, Blay J, Desai J, Gelderblom H, Palmerini E, Ryan C, Peterfy C, Healey J, van de Sande M, Qian M, Shuster D, Rajper A, Ye X, Tecson K, Wooddell M, Stacchiotti S. Long-term efficacy and safety of pexidartinib in patients with tenosynovial giant cell tumor: final results of the ENLIVEN study. The Oncologist 2025;30(7) View
  42. Li Y, Li N, Liu Z, Du S, Shuai Y, Yang R, Xu L, Li X, Jiang Y, Li W. The effectiveness of artificial intelligence health education accurately linking system on self-management in non-specific lower back pain patients. Frontiers in Public Health 2025;13 View