Abstract 45P
Background
Desmoid tumors (DT) are rare tumors and can cause significant morbidity and psychosocial harm. Their rarity amplifies challenges, particularly in middle-income countries. To understand these difficulties, the DT patient organization of Brazil (DB) conducted a qualitative study on the challenges faced by Brazilian DT patients (pts).
Methods
From Oct/2022 to Nov/2023, an online questionnaire was made available to pts who joined DB. It gathered data on gender, age at diagnosis, primary site, and prior treatments, as well as personal challenges including pain, travel for treatment, and healthcare trust. Volunteers then openly described their greatest challenges and perspectives. All comments underwent review and were classified based on recurring themes.
Results
A total of 279 pts completed the form. 86% (240) were female, and 14% (39) were male. Age at diagnosis was 30-49 years in 53% (148), 18-29 in 28% (78), 0-17 in 11.5% (32) and 50-69 in 7.5% (21). DT primary site was extra abdominal in 88.5% (247), while 11.5% (32) were intra-abdominal. Surgery was performed in 60.9% (170) of pts. Of these, 58.2% (99) reported a chronic decline in their quality of life as a result, and 59.4% (101) reported recurrence. 46.2% (129) of the pts reported pain, and 22.2% (62) reported insecurity with their healthcare team. 43% (120) of them reported needing to travel for treatment. Of the 243 (87%) pts who answered the two open-ended questions, the most cited challenges were lack of DT information in 32.1% (78) of comments, lack of a specialist team in 23.8% (58), psychological distress in 22.2% (54). The primary perspectives shared by 99 pts were: appreciation for the existence of a patient advocacy organization in 23.7% (24), and desire for further information and support in 20.7% (21).
Conclusions
Lack of information and access to specialists were the major challenges faced by DT pts in Brazil, while their main perspective was gratitude for having a patient advocacy organization and desire for further information and support. Considering the findings, DB has identified its focus for the next 5 years as promoting DT information and facilitating access to specialists.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.