A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
Memorial Sloan Kettering Cancer Center
Summary
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?
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- Yes
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.
Interventions
- Behavioralonline surveys
Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.
Location
- Memorial Sloan Kettering Cancer CenterNew York, New York