Mind the Heart - Mental Health in Children and Adolescents With Congenital Heart Defects

NCT ID: NCT05709470

Last Updated: 2025-09-26

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

RECRUITING

Total Enrollment

4800 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-03-17

Study Completion Date

2025-12-31

Brief Summary

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The aim of the Mind the Heart study is to document the feasibility of an online parent/child administered screening model for mental disorders (MDs) in Danish children and adolescents with congenital heart disease (CHD). As MDs in children and adolescents with chronic somatic health issues are frequently underdiagnosed and undertreated, we further aim to develop a website with evidence based information on mental health in children and adolescents with CHD in order to promote knowledge and awareness among families and health professionals across sectors.

Detailed Description

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Background:

CHD affects approximately 6-10 children per 1000 live births. Innovations in somatic treatment during the last 50 years have increased survival in children with CHD, but also showed a higher risk of cognitive disabilities and MDs like depression, ADHD and autism in children and adolescents with CHD compared to the general population. Untreated childhood MDs may have serious implications for the child's social and academic functioning, quality of life, future health and employment.

Methods:

Danish children and adolescents diagnosed with CHD (N \~ 4800) will be identified through Danish national registries. Parents to eligible children and adolescents will complete bespoke online questionnaires on sociodemographic factors and received psychological support for their children.

Our initial plan was to use the SDQ and DAWBA set-up for the entire CHD group, but based on the low participation rates in the first two CHD groups (the Fontans and ASDs) the set-up was simplified.

The set-up we used is as follows:

Set-up for Fontan and Atrial Septal Defects:

Parents and children ≥ 11 years will complete the internet based Strength and Difficulties Questionnaires (SDQ) and the Development and Wellbeing Assessment (DAWBA). The DAWBA data will be rated by trained clinicians for a possible, probably or no specific psychiatric diagnosis. A summarising report of the results from the DAWBA will be provided to the families within 3 months. Parents will be asked to complete a feasibility questionnaire on the screening procedure, including if they think it would be beneficial to adopt such a procedure in typical clinical practice. The feasibility of the entire online screening procedure will be evaluated.

Set-up for other CHD sub-types:

Parents to children and adolescents will complete the internet based Strength and Difficulties Questionnaire (SDQ). Using the predictive algorithms the probabality of any psychiatric disorder is categorised as either possible, probable or unlikely. Unmet mental health needs will be evaluated.

Emotional and behavioral symptoms and unmet mental health needs will be evaluated in different CHD subtypes separately and across subtypes.

In collaboration with families and cross-sectoral health care providers, a website will be developed. User needs will be identified through semi-structured interviews with representative end users, and the written content will be developed based on a systematic review of the scientific literature, including systematic reviews and meta-analysis, that either illuminates aetiological and maintaining factors for MDs in children and adolescents with CHD, or describes and tests various interventions, and a review of existing information material and management guidelines. The website will be hosted at Rigshospitalet. End user satisfaction will be evaluated through a bespoke questionnaire combined with the System Usability Scale.

The semi-structured interviews with the parents to children and adolescents with CHD and concurrent MDs will further be used for a qualitative study to explore their lived experiences of these issues (Linking Heart and Mind, described elsewhere (https://osf.io/93nb6)).

Conditions

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Heart Defects, Congenital Mental Health Issue

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Children and adolescents with congenital heart defects

Children and adolescents between 5-17 years of age, born with a congenital heart defect, living in Denmark at the inclusion time.

Participants are found though the Danish registries by a diagnosis of congenital heart defect. The diagnosis of Congenital Heart Defect must be given at one of the four University Hospitals in Denmark. These criteria are applied to ensure the validity of the diagnoses.

Data will be analysed and grouped based on CHD subgroups and as a whole CHD group.

No-intervention

Intervention Type OTHER

Observational cross-sectional study design with no intervention

Interventions

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No-intervention

Observational cross-sectional study design with no intervention

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Born with a Congenital Heart Defect
* Age 5-17y
* (Living in Denmark)

Exclusion Criteria

* Younger than 5years of age
* Older than 17years of age
* Lacking sufficient Danish language skills to answer the questionnaire
Minimum Eligible Age

5 Years

Maximum Eligible Age

17 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Danish Heart Foundation

OTHER

Sponsor Role collaborator

The Danish DAWBA Center

UNKNOWN

Sponsor Role collaborator

Aalborg University Hospital

OTHER

Sponsor Role collaborator

Aarhus University Hospital

OTHER

Sponsor Role collaborator

Rigshospitalet, Denmark

OTHER

Sponsor Role lead

Responsible Party

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Sara Hirani Lau-Jensen

Principal Investigater

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Vibeke E Hjortdal, M.D, PhD, professor

Role: STUDY_DIRECTOR

University of Copenhagen

Locations

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Department of cardiothoracic surgery, Rigshospitalet

Copenhagen, , Denmark

Site Status RECRUITING

Countries

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Denmark

Central Contacts

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Sara H Lau Jensen, M.D.

Role: CONTACT

004526192879

Julie L Hejl, M.D.

Role: CONTACT

004529895828

Facility Contacts

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Sara H Lau-Jensen, MD

Role: primary

+4526192879

Vibeke Hjortdal, PhD

Role: backup

+4526192879

Other Identifiers

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P-2021-339

Identifier Type: -

Identifier Source: org_study_id

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