Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases

Memorial Sloan Kettering Cancer Center250 enrolled

Overview

This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?

Study Type

OBSERVATIONAL

Enrollment

250

Conditions

Supportive Care Needs of Caregivers

Interventions

online surveysBEHAVIORAL

Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

Inclusion Criteria: * Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim). * Proficiency to complete study assessments in English, evaluated at the time of consent. * Age 18 or over. Exclusion Criteria: * Participant unwilling to sign consent. * Participant unable to complete web-based assessments.

Locations (1)

Memorial Sloan Kettering Cancer Center

New York, New York, United States

RECRUITING

Outcomes

Primary Outcomes

Supportive Care Needs of informal caregivers

measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)

Time frame: 3 years

Central Contacts

Eli Diamond, MD

CONTACT

212-610-0243 diamone1@mskcc.org

Katherine Panageas, DRPH

CONTACT

646-888-8237

Data from ClinicalTrials.gov

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