Aggressive Fibromatoses, Desmoid Tumor
Conditions
Brief summary
This study will evaluate patient-reported outcomes before and after percutaneous ablation of desmoid tumors. Adult participants undergoing ablation for desmoid tumor will complete surveys pre and post procedure to assess symptom burden, impact on daily life, early post-procedural pain and recovery, concomitant treatments, and radiological response following ablation.
Interventions
Percutaneous ablation of desmoid tumor
Sponsors
Study design
Eligibility
Inclusion criteria
* Adult patients undergoing ablation for desmoid tumor.
Exclusion criteria
* Declines to participate in research.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in desmoid tumor symptom severity following ablation | Baseline; 7 days; 1, 3, 6, 12, and 24 months post-ablation | Desmoid tumor symptom severity following ablation will be measured using the GODDESS© Desmoid Tumor Symptom Scale, a disease-specific patient-reported outcome measure assessing desmoid tumor-related symptoms. Scores will be calculated according to the validated GODDESS© scoring algorithm. Higher scores indicate greater symptom burden. |
| Change in desmoid tumor impact following ablation | Baseline; 7 days; 1, 3, 6, 12, and 24 months post-ablation | Desmoid tumor impact following ablation will be measured using the GODDESS© Desmoid Impact Scale, a disease-specific patient-reported outcome measure assessing desmoid tumor-related symptoms on patients' daily lives and functioning. Scores will be calculated according to the validated GODDESS© scoring algorithm. Higher scores are expected to indicate greater disease-related impact. |
| Change in post-procedural pain score | Baseline; 7 days; 1 month and 3 months post-ablation | The pain score is calculated from a 2 question self-report survey asking recipients to rate pain on a scale of 1-10. Higher scores indicate worse pain. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Radiological response following ablation | Through 24 months post-ablation | Radiologic assessment of desmoid tumor response on follow-up imaging, including tumor response characteristics as available in the medical record. |
Countries
United States
Contacts
Mayo Clinic