Teen and Young Adult Connections for Support From Multidisciplinary Professionals & Peers

University of Kansas

Status

Completed

Conditions

Short Bowel Syndrome

Malnutrition

Malabsorption

Treatments

Behavioral: iPad use plus one mobile connections to multidisciplinary professionals & peers

Behavioral: mConnect plus mobile connections to multidisciplinary professionals & peers

Study type

Interventional

Funder types

Other

NIH

Identifiers

NCT02987569

R01NR015743-01A1 (U.S. NIH Grant/Contract)

STUDY00004067

Details and patient eligibility

About

12 month study testing mobile delivery of health information and connections to professionals and peers to improve health of teen/young adult HPN users.

Full description

This research study will test the effect of in-home/mobile HPN support delivered to teen and young adult home parenteral nutrition (HPN) patients and family members over handheld personal computers. Effects on health status, QoL, and fatigue will be assessed over time between groups of study subjects from the ages of 13 through 30 randomized to one of two groups. Group One (intervention group) will receive mConnect, integrated evidence-based interventions (skill-building games, restorative naps & peer support) via mobile iPad and Internet delivery plus two real-time audiovisual encrypted connections with multidisciplinary professionals and peers. Group Two (control group) will receive healthy activity information via mobile iPad and Internet delivery plus one real-time audiovisual encrypted connection with professionals and peers.

Enrollment

83 patients

Sex

All

Ages

13 to 30 years old

Volunteers

No Healthy Volunteers

Inclusion criteria

Total parenteral nutrition (TPN) patients/users and family members/caregivers (defined as those individuals involved in daily home HPN care) age 13 and older
TPN users (also called HPN users) ages 13 through 30 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