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

Cook, Nigel S.; Landskroner, Kyle; Shah, Bhavik; Walda, Susann; Weiss, Olivia; Pallapotu, Vikrant

doi:10.1007/s12325-020-01364-4

Cited by 4 publications

(2 citation statements)

References 40 publications

(54 reference statements)

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“…Regarding the last treatments developed in TGCT, an algorithm is proposed in Figure 3 based on the presentation of the disease and the risk of recurrence. Patient needs and preferences must be included in the management ( 51 ).…”

Section: Treatmentmentioning

confidence: 99%

Update on Tenosynovial Giant Cell Tumor, an Inflammatory Arthritis With Neoplastic Features

2022

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Rheumatoid arthritis (RA) is a chronic inflammatory disease that leads to joint destruction and bone erosion. Even if many treatments were developed with success in the last decades, some patients fail to respond, and disease chronicity is still a burden. Mechanisms involved in such resistance may include molecular changes in stromal cells. Other explanations can come from observations of tenosynovial giant cell tumor (TGCT), first considered as an inflammatory arthritis, but with unusual neoplastic features. TGCT leads to synovium hypertrophy and hyperplasia with hemosiderin deposition. It affects young adults, resulting in secondary osteoarthritis and increased morbidity. TGCT shows clinical, histological and genetic similarities with RA but affecting a single joint. However, the monoclonality of some synoviocytes, the presence of translocations and rare metastases also suggest a neoplastic disease, with some features common with sarcoma. TGCT is more probably in an intermediate situation between an inflammatory and a neoplastic process, with a main involvement of the proinflammatory cytokine CSF-1/CSF1R signaling axis. The key treatment option is surgery. New treatments, derived from the RA and sarcoma fields, are emerging. The tyrosine kinase inhibitor pexidartinib was recently FDA-approved as the first drug for severe TGCT where surgery is not an option. Options directly targeting the excessive proliferation of synoviocytes are at a preclinical stage.

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Section: Treatmentmentioning

confidence: 99%

Update on Tenosynovial Giant Cell Tumor, an Inflammatory Arthritis With Neoplastic Features

2022

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“…OBBs represent asynchronous qualitative market research tools that provide an open, private forum for interactive discussion among participants (6). Several studies have been conducted using the OBB method to provide insights into different health conditions (6)(7)(8)(9)(10), but this approach has not been previously used in CUD. In the present study, we used the OBB qualitative approach to gain understanding and document the experiences of individuals with current CUD, those in CUD remission, and supporters.…”

Section: Introductionmentioning

confidence: 99%

Understanding the patient and supporter journey in cocaine use disorder

Leclair,

Waye,

Gomez-Mancilla

et al. 2024

Front. Psychiatry

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BackgroundThere is a paucity of literature describing experiences and journey of individuals with cocaine use disorder (CUD) and supporters who care for them. The aim of this study was to understand and document the journey of individuals with current CUD, those in CUD remission, and supporters.MethodsThe online bulletin board (OBB) is a qualitative tool where participants engage in an interactive discussion on a virtual forum. After completing a 15-minute screening questionnaire determining eligibility, individuals in CUD remission and supporters participated in an OBB for 60 minutes, split across 8 days over 2 weeks. Individuals with current CUD participated in a one-time virtual focus group discussion for 90 minutes.ResultsIndividuals in CUD remission (n=35) were from Brazil, France, Spain, the UK, and the US; those with current CUD (n=5) and supporters (n=6) were from the US. Key insights were that individuals with current CUD were seeking a ‘euphoric high’ that cocaine provides. Those in CUD remission described a ‘euphoric high’ when they first tried cocaine, but over time it became harder to re-create this feeling. Individuals in CUD remission expressed a ‘rollercoaster’ of emotions from when they first started using cocaine to when they stopped. Supporters were sad, isolated, and worried about a potential cocaine overdose for their loved ones with CUD.ConclusionThe study provides valuable insights into the experiences and journey of individuals with CUD and their supporters. Data generated from this study gives insights into this under-served and growing population.

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Current therapies and future prospective for locally aggressive mesenchymal tumors

et al. 2023

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Locally aggressive mesenchymal tumors comprise a heterogeneous group of soft tissue and bone tumors with intermediate histology, incompletely understood biology, and highly variable natural history. Despite having a limited to absent ability to metastasize and excellent survival prognosis, locally aggressive mesenchymal tumors can be symptomatic, require prolonged and repeat treatments including surgery and chemotherapy, and can severely impact patients’ quality of life. The management of locally aggressive tumors has evolved over the years with a focus on minimizing morbid treatments. Extensive oncologic surgeries and radiation are pillars of care for high grade sarcomas, however, play a more limited role in management of locally aggressive mesenchymal tumors, due to propensity for local recurrence despite resection, and the risk of transformation to a higher-grade entity following radiation. Patients should ideally be evaluated in specialized sarcoma centers that can coordinate complex multimodal decision-making, taking into consideration the individual patient’s clinical presentation and history, as well as any available prognostic factors into customizing therapy. In this review, we aim to discuss the biology, clinical management, and future treatment frontiers for three representative locally aggressive mesenchymal tumors: desmoid-type fibromatosis (DF), tenosynovial giant cell tumor (TSGCT) and giant cell tumor of bone (GCTB). These entities challenge clinicians with their unpredictable behavior and responses to treatment, and still lack a well-defined standard of care despite recent progress with newly approved or promising experimental drugs.

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

Cited by 4 publications

References 40 publications

Update on Tenosynovial Giant Cell Tumor, an Inflammatory Arthritis With Neoplastic Features

Update on Tenosynovial Giant Cell Tumor, an Inflammatory Arthritis With Neoplastic Features

Understanding the patient and supporter journey in cocaine use disorder

Current therapies and future prospective for locally aggressive mesenchymal tumors

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