148P The impact of desmoid tumors on patients' quality of life: Desmoid Tumor Research Foundation Natural History Study

Desmoid tumors (aggressive fibromatosis) can negatively affect patients' lives and overall quality of life due to the associated symptoms and complications. This analysis describes patient-reported symptom severity and impact of desmoid tumors on participants' lives. This is an analysis of the global, survey-based Desmoid Tumor Research Foundation (DTRF) Natural History Study using data collected from Sept 2017 to Aug 2023. Participants and/or their caregivers reported a desmoid tumor diagnosis, symptoms, and the impact on their lives. Symptom severity and impact were evaluated using a desmoid tumor-specific measure: the GOunder/DTRF Desmoid Symptom Scale (GODDESS© DTSS) and Impact Scale (GODDESS DTIS), where higher scores indicate worse symptoms or more severe impact (Qual Life Res 2023;32:2861). Mean scores for participants with a current tumor versus those without were compared using Analysis of Variance (ANOVA); other comparisons were descriptive. 367 participants completed the GODDESS surveys (median age, 39 years). Participants reported a high symptom burden, with an overall total symptom mean score of 4.1 out of 10. Item scores for pain, fatigue, and impaired mobility were significantly higher (worse) in participants with a current tumor versus those without (Table). Desmoid tumors had a negative impact on the participants' reported physical, sleep, and emotional domain scores (Table). Participants with abdominal wall desmoid tumors reported numerically higher (worse) symptom scores for pain, fatigue, and emotional items versus participants with intra-abdominal, extra-abdominal, and/or other tumor locations. Table: 148PGODDESS DTSS and DTIS domain scoresCurrent tumorYes n=247No n=106p-valueaDTSS scoresbTotal symptom score4.43.40.002Pain domain (worst feeling of…)4.53.50.002Pain4.93.80.003Dull pain4.13.30.012Shooting pain4.53.30.001Fatigue5.04.10.011Extra-abdominal symptom domain (worst…)4.03.10.010Swelling around tumor(s)3.62.50.004Difficulty moving near the tumor(s)4.83.50.001Abdominal symptoms domain (worst feeling of…)c4.03.60.409Abdominal pain4.84.30.412DTIS domain scoresPhysical functiond1.71.40.005Sleepd1.81.50.026Emotionb4.43.90.125aANOVA, p<0.05 b11-point Numerical Rating Scale cCompleted by participants with relevant tumors d5-point Likert scale Open table in a new tab aANOVA, p<0.05 b11-point Numerical Rating Scale cCompleted by participants with relevant tumors d5-point Likert scale The pain and impaired physical functioning and emotional well-being reported by participants can have a negative impact on their lives. Effective care of patients with desmoid tumors depends on understanding the real-world burden and impact of these tumors.