Patient and Caregiver Reported Outcomes in Adult Liver Transplant Candidates
L
Lauren Nephew
Primary Investigator
Enrolling By Invitation
18-100 years
All
Phase
N/A
20 participants needed
1 Location
Overview
We are doing this research study to evaluate the lived experience of adults who have already had a liver transplant or are in the process of being worked up for a liver transplant. The data gathered from this project will be used to identify unmet needs of patient
undergoing LT evaluation and LTCs to develop interventions to optimize
their care pre- and post-transplant.
We are looking for:
1) Adults (ages 18 and older) who have either had or are in the process of being listed for liver transplant
2) Caregivers (ages 18 and older) of someone who either had a liver transplant or is in the process of being listed for liver transplant
Patients and caregivers will complete survey questions that will include: demographic information, financial burden, symptom burden, work productivity, quality of life, and caregiver burden.
Description
The goal of this research is to generate a comprehensive assessment of the experiences of patient undergoing LT evaluation and liver transplant candidates (LTCs) and their informal caregivers. We will conduct a multi-site, cross-sectional, observational study of up to 500 patient undergoing LT evaluation and LTCs and their caregivers to assess financial burden, work productivity, quality of life, caregiver burden, and demographic and clinical factors.
What Happens During Study Participation
- Patients will be asked to complete one survey ( approx 15 min) in-person, via phone, mail, or an unencrypted email link using REDCap, whichever is their preference.
- Caregivers will be asked to complete questionnaires (approx. 20 min) about the burdens they face in being a caregiver.
We will administer these measures as soon as consent is obtained and participants will have 30 days to complete the battery of questionnaires. If participants do not have an email address or do not feel comfortable with unencrypted emails, we will either send them paper copies of the survey or ask them to complete them verbally over the telephone. We will track the methods of survey completion among participants. The entire study assessment battery will take approximately 15 minutes to complete.
We chose the proposed questionnaires based on constructs of interest: demographic information, financial burden, symptom burden, work productivity, quality of life, caregiver burden.
We chose the proposed questionnaires based on constructs of interest: demographic information, financial burden, symptom burden, work productivity, quality of life, caregiver burden.
Eligibility
You may be eligible for this study if you meet the following criteria:
-
Conditions:
healthy, liver transplant
-
Age: Between 18 Years - 100 Years
-
Gender: All
Patient Inclusion Criteria
1. Patient undergoing LT evaluation and liver transplant candidates
2. Adult patients ≥ 18 years of age
3. Able to communicate and respond to questionnaires
Patient Exclusion Criteria
1. Past history of solid organ transplant other than liver transplantation
2. History of advanced malignancies other than hepatocellular carcinoma
3. Presence of uncontrolled psychiatric illness or impaired cognition prohibiting informed consent
Caregiver Eligibility Criteria
1. A relative or friend of eligible patient who lives with them and/or has in-person contact with them at least twice per week
2. Able to communicate and respond to questionnaires
3. Age 18 or older
1. Patient undergoing LT evaluation and liver transplant candidates
2. Adult patients ≥ 18 years of age
3. Able to communicate and respond to questionnaires
Patient Exclusion Criteria
1. Past history of solid organ transplant other than liver transplantation
2. History of advanced malignancies other than hepatocellular carcinoma
3. Presence of uncontrolled psychiatric illness or impaired cognition prohibiting informed consent
Caregiver Eligibility Criteria
1. A relative or friend of eligible patient who lives with them and/or has in-person contact with them at least twice per week
2. Able to communicate and respond to questionnaires
3. Age 18 or older
Updated on
15 May 2024.
Study ID: GI-MGH-PACE, 18720
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