Supportive Care Needs of Caregivers
Conditions
Keywords
Supportive care, Erdheim-Chester Disease, Other Histiocytic Diseases, 19-213
Brief 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?
Interventions
BEHAVIORALonline surveys
Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.
Sponsors
Memorial Sloan Kettering Cancer Center
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Supportive Care Needs of informal caregivers | 3 years | measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC) |
Countries
United States
Contacts
CONTACTEli Diamond, MD
CONTACTKatherine Panageas, DRPH
PRINCIPAL_INVESTIGATOREli Diamond, MD
Memorial Sloan Kettering Cancer Center
Outcome results
None listed