83P - Impact of VHL-associated tumor treatment on mental health: An international patient survey

Background

Treatment (tx) options for patients (pts) with Von Hippel-Lindau syndrome (VHL) were previously limited to surgeries between regular scans, observation and txs that preserve organ function. Little data exists on the burden of VHL-associated tumor tx on the mental health of pts.

Methods

International, cross-sectional survey comprising pts in the United States, Canada, UK, France, and Germany. Pts recruited via the VHL Alliance. Pts must have renal cell carcinoma (RCC), pancreatic neuroendocrine tumors (pNET), and/or central nervous system hemangioblastoma (CNS Hb). Data collected included demographics, impact of most recent surgery on aspects of their condition (1-7 scale 1: greatly worsened and 7: greatly improved), feelings before/after their most recent surgery (1-5 scale, 1: completely disagree, 5: completely agree with presented statements), and treatment preference questions.

Results

Data collected from 220 pts (68% female, median age 40 years, median disease duration 16 years) in US (n=108), CA (n=37), UK (n=21), FR (n=3), and DE (n=51). 146 pts reported RCC (66%), 122 pNET (56%), and 190 CNS-Hb (86%). 205 (93%) pts had experienced surgery; 171 (78%) had experienced multiple surgeries (median = 4). Top three concomitant self-reported conditions were anxiety (36%), depression (29%) and high blood pressure (28%). 24% of pts consulted a mental health specialist. 51% of pts indicated that their most recent surgery worsened their mental health (rated 1-3), 84% of pts agreed they felt anxious before their most recent surgery (rated 4-5). After their most recent surgery 50% of pts agreed they felt anxious. 33% of pts indicated improving quality of life was in their top 3 treatment goals; 17% indicated improving mental wellbeing was in their top 3 treatment goals. 73% of patients indicated they would prefer to take a pill which would possibly delay time until surgery, rather than watch and wait to see if the tumor would grow.

Conclusions

Pts with VHL-associated disease report anxiety and depression as the most common mental health conditions, and agree that upcoming surgery worsens their anxiety. Over half of pts reported that their most recent surgery worsened their mental health. Despite this, less than a quarter of pts consulted a mental health specialist.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Merck.

Funding

Merck.

Disclosure

O. Iliopoulos: Financial Interests, Personal, Speaker, Consultant, Advisor: Merck, C4 Therapeutics. C. Atkinson, C. Cooper, G. Taylor-Stokes: Financial Interests, Institutional, Sponsor/Funding, Received funding from Merck to conduct the study: Adelphi Real World. J. Mann: Financial Interests, Personal, Stocks/Shares: Merck. M. Sundaram: Financial Interests, Personal, Full or part-time Employment: Merck; Financial Interests, Personal, Stocks/Shares: Merck, BMS, AbbVie, J&J.