CompletedNot Applicable

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

United States83 participantsStarted 2016-07

Plain-language summary

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

Who can participate

Age range

13 Years – 30 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Health Survey SF-12v2 (predicts future health services use).

Timeframe: T0 (baseline data collection)

Quality of Life (Cantril Ladder)

Timeframe: T0 (baseline data collection)

Beck Depression Inventory-II (BDI-II)

Timeframe: T0 (baseline data collection)

Use of Healthy Living Activities Prompts, health intentions that predict engagement in targeted activities.

Timeframe: T2 (month 1-2/mConnect intervention period)

Use of Healthy Living Activities Prompts, health intentions that predict engagement in targeted activities.

Timeframe: T3 (month 3-4/mConnect intervention period)

Beck Depression Inventory-II (BDI-II)

Timeframe: T3 (4 months: change from T0/baseline)

Health Survey SF-12v2 (predicts future health services use).

Timeframe: T3 (4 months: change from T0/baseline)

Trial details

NCT IDNCT02987569

SponsorUniversity of Kansas Medical Center

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2019-12

View on ClinicalTrials.gov More Short Bowel Syndrome trials

Who can participate

Age range

13 Years – 30 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Health Survey SF-12v2 (predicts future health services use).

Timeframe: T0 (baseline data collection)

Quality of Life (Cantril Ladder)

Timeframe: T0 (baseline data collection)

Beck Depression Inventory-II (BDI-II)

Timeframe: T0 (baseline data collection)

Use of Healthy Living Activities Prompts, health intentions that predict engagement in targeted activities.

Timeframe: T2 (month 1-2/mConnect intervention period)

Use of Healthy Living Activities Prompts, health intentions that predict engagement in targeted activities.

Timeframe: T3 (month 3-4/mConnect intervention period)

Beck Depression Inventory-II (BDI-II)

Timeframe: T3 (4 months: change from T0/baseline)

Health Survey SF-12v2 (predicts future health services use).

Timeframe: T3 (4 months: change from T0/baseline)