Mobile Technologies Assisting Patients & Family Caregivers in Healthy Living
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Short Bowel Syndrome
- Sponsor
- University of Kansas Medical Center
- Enrollment
- 121
- Locations
- 1
- Primary Endpoint
- Engagement in Healthy Living Activities
- Status
- Completed
- Last Updated
- 9 years ago
Overview
Brief Summary
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.
Detailed Description
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.
Investigators
Eligibility Criteria
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
Outcomes
Primary Outcomes
Engagement in Healthy Living Activities
Time Frame: 8 Months
Change from Baseline to 8 Months of the logged frequency of healthy living activities with a 10-item Likert scale.
Quality of Life
Time Frame: 8 Months
Change from Baseline to 8 Months of the 3-item Likert scale rating using the Cantril Ladder.
Access to Health Care
Time Frame: 8 months
Change from Baseline to 8 Months Change of the 6-item Likert scale instrument rating.
Health Satisfaction SF-12
Time Frame: 8 Months
Change from Baseline to 8 Months of the Health Survey SF-12v2 7-item Likert scale rating.
Secondary Outcomes
- Virtual Nurse Caring(8 months)
- Caregiving Burden(8 Months)
- Preparedness to Manage Home-Care(8 Months)