Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.

Milea J M TimbergenWinette T A van der GraafDirk J GrünhagenEugenie YoungerStefan SleijferAlison DunlopLucy DeanCornelis VerhoefLonneke V van de Poll-FranseOlga Husson

Published in: Sarcoma (2020)

This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients.

Keyphrases

end stage renal disease
ejection fraction
newly diagnosed
chronic kidney disease
prognostic factors
peritoneal dialysis
cross sectional
patient reported