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?
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.
Participant unwilling to sign consent.
Participant unable to complete web-based assessments.
A target sample of 120 ICs of patients with Erdheim-Chester Disease will be enrolled in this study. Additionally, a target sample of 50 ICs of patients with other histiocytic disorders will be enrolled.
Cohort
Prospective
online surveys
BehavioralSurvey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.
Supportive Care Needs of informal caregivers
measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)
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