The CHAPTER II Study - Congenital Heart Adolescents Participating in Transition Evaluation Research

NCT ID: NCT01723332

Last Updated: 2017-11-06

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

120 participants

Study Classification

INTERVENTIONAL

Study Start Date

2012-11-30

Study Completion Date

2016-12-01

Brief Summary

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Transition is the planned movement of teens with chronic conditions from child-centered to adult-oriented healthcare. National bodies have published detailed guidelines about the importance of helping teens move to adult healthcare. However, there is no research regarding how to best organize and deliver Congenital Heart Disease (CHD) transition programs. Data is urgently needed. Therefore, the aim of this program is to develop research evidence that will better prepare health care providers to improve how they can help adolescents with transition.

This project will determine whether a nurse-led transition intervention program is better at preparing teens with CHD to independently manage their medical care, compared to the care that is currently provided. The most important finding of this study will be whether or not these teens subsequently attend the adult cardiology clinic that specializes in CHD problems, and the timing of when they attend.

Hypothesis: A transition intervention in combination with usual care, improved time to first Adult Congenital Heart Disease (ACHD) clinic attendance compared to usual care alone.

Detailed Description

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Conditions

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Congenital Heart Disease

Keywords

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Transition from pediatric to adult clinical care

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Intervention

Clinical based educational and self management intervention.

Group Type EXPERIMENTAL

Educational

Intervention Type BEHAVIORAL

The first interaction will happen at study enrolment and will be educational in nature.

Following the session, the nurse will follow up with the participant to discuss any questions.

Self management

Intervention Type BEHAVIORAL

The second interaction will take place 2 months after enrollment and will focus on self management and communication skills.

Following the session, the nurse will follow up with the participant to discuss any questions.

Usual Care

Youth seen in the Cardiology clinic see a nurse only to measure weight, height, and blood pressure. They rely on their cardiologist for information about their heart condition. The approach and amount of time taken by each cardiologist with a youth varies.

Group Type NO_INTERVENTION

No interventions assigned to this group

Interventions

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Educational

The first interaction will happen at study enrolment and will be educational in nature.

Following the session, the nurse will follow up with the participant to discuss any questions.

Intervention Type BEHAVIORAL

Self management

The second interaction will take place 2 months after enrollment and will focus on self management and communication skills.

Following the session, the nurse will follow up with the participant to discuss any questions.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* 16 and 17 year olds with moderate or complex CHD

Exclusion Criteria

* Significant developmental delay
* Previous heart transplantation
Minimum Eligible Age

16 Years

Maximum Eligible Age

17 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Heart and Stroke Foundation of Canada

OTHER

Sponsor Role collaborator

University of Alberta

OTHER

Sponsor Role lead

Responsible Party

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Andrew Mackie

Associate Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Andrew S Mackie, MD, SM

Role: PRINCIPAL_INVESTIGATOR

University of Alberta

Locations

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Stollery Children's Hospital

Edmonton, Alberta, Canada

Site Status

Hospital For Sick Children

Toronto, Ontario, Canada

Site Status

Countries

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Canada

References

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Mackie AS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, Yaskina M, Sananes R, Oechslin E, Dragieva D, Mustafa S, Williams E, Schuh M, Manlhiot C, Anthony SJ, Magill-Evans J, Nicholas D, McCrindle BW. Transition Intervention for Adolescents With Congenital Heart Disease. J Am Coll Cardiol. 2018 Apr 24;71(16):1768-1777. doi: 10.1016/j.jacc.2018.02.043.

Reference Type DERIVED
PMID: 29673467 (View on PubMed)

Mackie AS, Rempel GR, Kovacs AH, Kaufman M, Rankin KN, Jelen A, Manlhiot C, Anthony SJ, Magill-Evans J, Nicholas D, Sananes R, Oechslin E, Dragieva D, Mustafa S, Williams E, Schuh M, McCrindle BW. A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study. BMC Cardiovasc Disord. 2016 Jun 6;16:127. doi: 10.1186/s12872-016-0307-2.

Reference Type DERIVED
PMID: 27266868 (View on PubMed)

Other Identifiers

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CHAPTER II

Identifier Type: -

Identifier Source: org_study_id