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. 2020 Jun;37(6):2813-2828.
doi: 10.1007/s12325-020-01364-4. Epub 2020 May 11.

Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

Nigel S Cook  1 , Kyle Landskroner  2 , Bhavik Shah  3 , Susann Walda  4 , Olivia Weiss  4 , Vikrant Pallapotu  3
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Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

Nigel S Cook et al. Adv Ther. 2020 Jun.

Abstract

Introduction: Pigmented villonodular synovitis (PVNS), also known as giant-cell tumour of the tendon sheath (GCTT), is a rare, benign proliferative tumour affecting the inner lining of synovial joints and tendon sheets. Information on treatment needs of PVNS patients to inform drug development is currently scarce. We conducted an exploratory qualitative study with PVNS patients to generate insights into the objective and emotional aspects related to their medical journey and experiences of living with this disease.

Methods: A 4-day study using an online bulletin board (OBB), an asynchronous, online qualitative research platform, was conducted with patients recruited via physician referral who underwent screening questions to ensure eligibility for the study and willingness to participate. The discussion was moderated, was structured and allowed open answers in response to other participants' posts.

Results: Eleven patients (4 from the USA, 4 from the UK and 3 from Canada; 45% female), aged 28-57 years, suffering from PVNS for 2-27 years participated in the study. Key patient insights from the study were: (1) pain was the topmost, spontaneous thought that the participants associated with PVNS, constituting a significant emotional and psychological burden; (2) surgery (arthroscopy) did not completely ameliorate symptoms associated with PVNS, as the relapse rate was high in these patients; (3) PVNS has a substantial negative financial impact on patients, their families and the healthcare system; (4) orthopaedic specialists/surgeons predominantly managed PVNS, as surgery is currently the only therapeutic option.

Conclusion: PVNS patients expressed an urgent need for a medical drug treatment, which can reduce pain, avoid relapses and provide an alternative to surgery, the current standard of care.

Keywords: GCTT; Giant-cell tumour of the tendon sheath; Online bulletin board; PVNS; Patient perspective; Patient-based evidence; Pigmented villonodular synovitis; Qualitative research; Rare disease; Rheumatology.

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Figures

Fig. 1
Fig. 1
Patient journey. CT computed tomography, GP general physician, MRI magnetic resonance imaging, OTC over the counter, PVNS pigmented villonodular synovitis
Fig. 2
Fig. 2
Frequently mentioned words and phrases (a) and symptoms (b) described by the patients in OBB. OBB online bulletin board, PVNS pigmented villonodular synovitis
Fig. 3
Fig. 3
Economic burden: financial consequences of PVNS for patients, their families and healthcare system. OTC over the counter, PVNS pigmented villonodular synovitis
See this image and copyright information in PMC

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References

    1. Flandry F, Hughston JC, McCann SB, Kurtz DM. Diagnostic features of diffuse pigmented villonodular synovitis of the knee. Clin Orthop Relat Res. 1994;298:212–220. - PubMed
    1. Akgun I, Ogut T, Kesmezacar H, Dervisoglu S. Localized pigmented villonodular synovitis of the knee. Orthopedics. 2003;26:1131–1135. - PubMed
    1. Kroot EJ, Kraan MC, Smeets TJ, Maas M, Tak PP, Wouters JM. Tumour necrosis factor alpha blockade in treatment resistant pigmented villonodular synovitis. Ann Rheum Dis. 2005;64:497–499. doi: 10.1136/ard.2004.025692. - DOI - PMC - PubMed
    1. Zee AAG, Verspoor FGM, Hannink G, Schreuder HWB, van der Geest ICM, Veth RPH. Long-term follow-up results of primary and recurrent pigmented villonodular synovitis. Rheumatology. 2014;53:2063–2070. doi: 10.1093/rheumatology/keu230. - DOI - PubMed
    1. Temponi EF, Barros AAG, Paganini VO, Barbosa VAK, Badet R, Carvalho Junior LH. Diffuse pigmented villonodular synovitis in knee joint: diagnosis and treatment. Rev Bras Ortop. 2017;52:450–457. doi: 10.1016/j.rbo.2016.07.002. - DOI - PMC - PubMed

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