Home Parenteral Nutrition (HPN) Families' Mobile Distance Connections to Care Research

N/ACompletedNCT01900288

University of Kansas Medical Center121 enrolled

Overview

The purpose of this study is to test Mobile Technologies in Assisting Patients \& Family Caregivers in Healthy Living and complex home care by connecting to information and professionals from a distance.

HPN (Home Parenteral Nutrition) families with TPN (Total Parenteral Nutrition) users are typically geographically distant from one another (peers) as well as professional providers. Real-time mobile access to health related information, peer and professional support will be tested in this study.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Enrollment

121

Conditions

Short Bowel Syndrome Malabsorption Malnutrition

Interventions

HPN Group Clinic Appointments using Mobile Devices (experimental)BEHAVIORAL

Visual meetings with geographically distant professionals and peers using a mobile device (iPad mini).

Mobile Device Access (placebo)BEHAVIORAL

Use of iPad mini unrelated to the intervention until last contact with one connection to professionals for comparison.

Eligibility

Sex: ALLMin age: 13 Years

Medical Language ↔ Plain English

Inclusion Criteria: * 13 years or older total parenteral nutrition (TPN) patients/users and family members/caregivers (defined as those individuals involved in daily home HPN care) * TPN users (also called HPN users) must be receiving intravenous nutrition for a non-malignant short bowel disorder * Read, write, speak English and provide informed consent * Be able to participate in group clinic visits Exclusion Criteria: * enteral nutrition dependency only * less than 13 years of age * 13 through 17 years of age without parental consent * currently enrolled in an intervention study or HPN management program * severe cognitive impairment * disability disorders (e.g. blindness which cannot be accommodated for active participation in the group clinics

Locations (1)

University of Kansas Medical Center

Kansas City, Kansas, United States

Outcomes

Primary Outcomes

Engagement in Healthy Living Activities

Change from Baseline to 4 Months of the logged frequency of healthy living activities with a 10-item Likert scale.

Time frame: 4 Months

Health Satisfaction SF-12

Change from Baseline to 4 Months of the Health Survey SF-12v2 7-item Likert scale rating.

Time frame: 4 Months

Quality of Life

Change from Baseline to 4 Months of the 3-item Likert scale rating using the Cantril Ladder.

Time frame: 4 Months

Access to Health Care

Change from Baseline to 4 Months of the 6-item Likert scale instrument rating.

Time frame: 4 Months

Engagement in Healthy Living Activities

Change from Baseline to 8 Months of the logged frequency of healthy living activities with a 10-item Likert scale.

Time frame: 8 Months

Health Satisfaction SF-12

Change from Baseline to 8 Months of the Health Survey SF-12v2 7-item Likert scale rating.

Time frame: 8 Months

Quality of Life

Change from Baseline to 8 Months of the 3-item Likert scale rating using the Cantril Ladder.

Time frame: 8 Months

Access to Health Care

Change from Baseline to 8 Months Change of the 6-item Likert scale instrument rating.

Time frame: 8 months

Secondary Outcomes

Data from ClinicalTrials.gov

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Preparedness to Manage Home-Care

Change from Baseline to 4 Months of the caregiver strain rating with and 8-item Likert scale.

Time frame: 4 Months

Caregiving Burden

Change from Baseline to 4 Months of the rating from the Oberst Caregiving Burden Scale 15-item Likert scale.

Time frame: 4 Months

Preparedness to Manage Home-Care

Change from Baseline to 8 Months Change from Baseline to 4 Months of the caregiver strain rating with and 8-item Likert scale.

Time frame: 8 Months

Caregiving Burden

Change from Baseline to 8 Months Change from Baseline to 4 Months of the rating from the Oberst Caregiving Burden Scale 15-item Likert scale.

Time frame: 8 Months

Virtual Nurse Caring

At 8 months, using the Virtual Nurse Caring 20-item Likert scale instrument, caregiver's rating of perception of nurse care and needs met via mobile device is assessed.

Time frame: 8 months