Supportive Care Needs of Caregivers of People With Erdheim-Chester Disease and Other Histiocytic Diseases
Recruiting
- Conditions
- Supportive Care Needs of Caregivers
- Interventions
- Behavioral: online surveys
- Registration Number
- NCT03990428
- Lead Sponsor
- Memorial Sloan Kettering Cancer Center
- 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?
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 170
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.
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Exclusion Criteria
- Participant unwilling to sign consent.
- Participant unable to complete web-based assessments.
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Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Caregivers of Patients online surveys This is an observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases. That will collect data cross-sectionally, at a single time point. Caregiver-reported data will be completed in the form of online surveys by the participants themselves using the Research Electronic Data Capture Platform \[RedCAP\] platform.
- Primary Outcome Measures
Name Time Method Supportive Care Needs of informal caregivers 3 years measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC)
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Memorial Sloan Kettering Cancer Center
🇺🇸New York, New York, United States