Discharge to Home and Chronic Illness Care Pilot

Study Overview
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Brief Summary
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The purpose of this study is to address a gap in knowledge needed for care of children with solid organ transplantation (SOT) and their parents by combining mHealth technology with an individualized family centered self-management intervention (referred to as myFAMI). This study is critical to the increased understanding of hospital to home transition and family management at home with the potential to transform the way clinicians approach the care of complex chronic illness children and families.

Official Title
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Discharge to Home and Chronic Illness Care Pilot

Conditions
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Solid Organ Transplant

Intervention / Treatment
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* Behavioral: myFAMI iPad application


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: parent's child has undergone a heart, kidney, or liver transplant and is being discharged home from the hospital the parent is English speaking (to date the tools being used have been validated for English participants only) parent is 18 years of age or older patient is 17 years of age and younger. Exclusion Criteria: presence of significant communication or cognitive impairment on the part of the parent that would preclude completion of questionnaires based on self-report parent and child has experienced the discharge to home transition from a previous transplant.

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 90 Years

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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Design Details

Primary Purpose: Health Services Research
Allocation: Randomized
Intervention Model: Single Group Assignment
Masking: Single


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Control<br>Ten parents will be randomized to the control group defined as 'usual care' and ten to the intervention group, stratified by type of transplant. | Behavioral: myFAMI iPad application<br> <br> |
| Experimental: Intervention<br>Ten parents will be randomized to the control group defined as 'usual care' and ten to the intervention group, stratified by type of transplant. | Behavioral: myFAMI iPad application<br> <br> |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Evaluate the effectiveness of myFAMI on 30-day post-discharge outcomes. | Hypothesis: Compared to parents who received standard discharge preparation (usual care), parents receiving myFAMI will report: i) Better care coordination, ii) Higher quality of discharge teaching, iii) Greater readiness for hospital discharge, iv) Improved post-discharge coping, v) Improved family functioning, vi) Better self-management of medication and treatment regimens vii) Fewer emergency department visits and hospital readmissions | 30 days following enrollment | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Examine the acceptability of myFAMI: | 2. Examine the acceptability of myFAMI: The content of the interview will focus on strengths and weaknesses of iPad® technology in preparing parents for hospital discharge utilizing both survey and qualitative questions | Enrollment plus 30 days | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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pediatric, solid organ transplant, parents, heart, kidney, liver