Caregiver Burden and Distress in Hematopoeitic Stem Cell Transplant

Study Overview
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Brief Summary
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The purpose of this study is to examine the impact that serving as a caregiver for a patient undergoing hematopoietic stem cell transplant has on the caregiver. This will include looking at the caregiver's level of burden, depression, anxiety, somatic symptoms, fatigue and overall distress. It will also look at whether caregiver burden leads to an increase in hospitalization and overall outcome.

Official Title
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The Impact of Hematopoeitic Stem Cell Transplantation on Primary Caregiver Level of Burden and Distress

Conditions
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Depression, Anxiety, Fatigue, Distress

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Patient: Any patient undergoing autologous or allogeneic HSCT at The Blood and Marrow Transplant Program at Northside Hospital Patients must have a single primary caregiver Patients must be willing to comply with all assessments as outlined in the protocol Patients must be willing to sign informed consent Caregiver: Must be the primary caregiver for an autologous or allogenic HSCT patient at the Blood and Marrow Transplant Program at Northside Hospital Caregiver must be willing to comply will all assessments as outlined in the protocol Caregiver must be willing to sign consent
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Brief Symptom Inventory and Burden Interview | Brief Symptom Inventory (BSI) measures overall distress. Scores can range from 0-72 with the higher score representing a higher level of distress. Each question is 0-4 with 4 being higher levels of distress. Clinically significant level of distress is 25+. Burden Interview is scored on a continuum. No clinically range, but higher scores mean higher feelings of burden. Scores range from 0-88. Time frame: BSI scores and Burden scores were compared in caregivers of HSCT patients at preBMT and post BMT (30 days and 1 year). | Baseline, Day 30 & 1 year | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Patient Distress, Fatigue & Pain Scores | BSI scale 0-72 with the higher score representing higher distress Brief Fatigue inventory 0-90 with the higher score representing higher fatigue Brief Pain inventory 0-120 with the higher score representing higher pain | Baseline, Day 30 & 1 year | 
| Overall Patient Survival | Number of patients who are alive at 1 year | Pre-transplant to 1 year post-transplant | 
| Common Characteristics of Caregivers | 12 demographic characteristics were collected. If common characteristics were found then it would have been analyzed for correlation with caregiver burden and distress | Baseline | 
| Length of Patient Hospitalization |  | pretransplant to 1 year post-transplant | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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HSCT, Caregiver, Caregiver Burden, Allogeneic Transplant, Autologous Transplant, Hematopoietic Stem Cell Transplantation