Symptoms, unmet needs, and quality of life in Erdheim-Chester disease: a longitudinal registry-based analysis.

ABSTRACT:

Abstract

Measurement of patient-reported outcomes (PROs) and health-related quality of life (HrQOL) are crucial for comprehensive, patient-centered cancer care. Both PROs and HrQOL have been understudied in patients with Erdheim-Chester disease (ECD), a rare cancer with protean manifestations, dense symptomatology, and frequent diagnostic delay. We sought to evaluate the longitudinal evolution of symptom burden and unmet supportive care needs in patients with ECD, and to identify associations between these PROs and HrQOL. A registry-based cohort of patients with ECD completed a PRO battery including the Functional Assessment of Cancer Therapy-General (FACT-G) and other validated PRO measures. Descriptive statistics were used to characterize the distribution of PROs and FACT-G score

SUBMITTER: Marathe PH 

PROVIDER: S-EPMC12405683 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature