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
Monique J L MastboomMichiel Adreanus van de Sande

Abstract

Tenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described. The aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT. Members of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome. Three hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% ...Continue Reading

References

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Citations

Jul 19, 2019·The Journal of Bone and Joint Surgery. American Volume·M J L MastboomUNKNOWN Tenosynovial Giant Cell Tumors (TGCT) Study Group
Apr 17, 2020·Expert Review of Anticancer Therapy·Emanuela PalmeriniEric Lodewijk Staals
Jul 24, 2020·Future Oncology·Hans Gelderblom, Michiel van de Sande
Jul 14, 2020·EFORT Open Reviews·Maria Beatriz QuaresmaJoaquim Soares do Brito
Feb 10, 2021·Journal of Occupational and Environmental Medicine·Feng LinJohn A Abraham
Jul 21, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Emily G MillerMeghan C Halley

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Software Mentioned

PVNS
PROMIS
NetQuestionnaire
SPSS
PF
NetQ

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