Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience.

Q: What are the key findings of this study?

Correct identification of one's congenital heart disease defect was associated with certain outcomes, though associations with other health outcomes were mixed.

Q: What is the clinical evidence from this study?

Study design: Cross-Sectional. Population: Congenital Heart Disease (CHD). Intervention: Correct identification of CHD defect vs. Incorrect identification of defect. Primary outcome: Continuity of care and other health outcomes (p=< 0.001).

Q: What does this research mean for the field?

Correct self-identification of congenital heart disease defects among adult survivors is significantly associated with certain outcomes including continuity of care, though associations with other health outcomes are mixed. Novelty: ClaimNovelty.INCREMENTAL. Consensus alignment: ConsensusAlignment.NEUTRAL.

Q: What question did this study set out to answer?

To assess factors impacting knowledge of congenital heart disease (CHD) and its effect on health outcomes in adults with CHD.

Matthew E. Oster; Kenneth Williams; Kaivalya Gudooru; Yanxu Yang; Osama Aldoss; Mansi Gaitonde; Gurumurthy Hiremath; Jeffrey P. Jacobs; Anitha S. John; Deborah Kozik; Bradley Marino; Kimberly McHugh; Geetha Raghuveer; James St Louis; Lazaros Kochilas

doi:10.1017/s1047951126111998

July 17, 2026Open Access

Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience.

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Key result

Correct CHD self-identification links to continuity of care despite mixed overall health outcomes.

P<0.001

Why the study?

Defect knowledge is fundamental for optimising outcomes in adults with CHD, but factors linked to this knowledge and its impact on outcomes require assessment.

Does correct self-identification of CHD defect improve self-reported health outcomes and continuity of care in adults with CHD?

Key Points

To assess factors impacting knowledge of congenital heart disease (CHD) and its effect on health outcomes in adults with CHD.
Cross-sectional cohort study of adults with CHDs aged 18-82 years at 11 US centers.
Participants completed surveys on disease knowledge and health-related quality of life outcomes in 2021-2023.
Comparison of self-identified defects to medical records was conducted to assess identification accuracy.
Correct identification of defects was associated with improved health outcomes (p < 0.001).
Demographic factors influenced knowledge accuracy, though results were mixed for other health outcomes.
Enhancing knowledge of CHD may promote better continuity of care.

Study Design

Type

Cross-Sectional

Multicenter

Yes

Structured PICO

Does correct self-identification of CHD defect improve self-reported health outcomes and continuity of care in adults with CHD?

P

Population

Adults with congenital heart disease aged 18-82 years who underwent intervention between 1982 and 2003 at 11 US centers.

E

Exposure

Correct self-identification of CHD defect

C

Comparator

Incorrect or lack of self-identification of CHD defect

O

Outcome

Self-reported health outcomes, quality of life, and continuity of carepatient reported

Main Result

p-value: p=< 0.001

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Implication

Improving a patient's knowledge of their specific congenital heart defect may be an effective strategy for maintaining continuity of care.

Abstract

BACKGROUND: Knowledge of one's defect is fundamental in optimising outcomes in adults with CHD. We aimed to assess factors associated with defect knowledge and how that knowledge may impact outcomes. METHODS: We performed a cross-sectional cohort study of adults with CHDs aged 18-82 years with intervention between 1982 and 2003 at one of 11 US centres in the Pediatric Cardiac Care Consortium. Participants completed a survey in 2021-2023 regarding disease knowledge and various health and quality of life outcomes. After comparing participants' self-identification of their defect to that recorded in the medical record, we identified demographic factors associated with correct identification and assessed the association of correct identification with outcomes. CONCLUSIONS: Improving a person's knowledge of their CHD may be an effective strategy for maintaining continuity of care.

Discussion

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Cite This Study

Oster et al. (2026) conducted a cross-sectional in Congenital Heart Disease (CHD). Correct identification of CHD defect vs. Incorrect identification of defect was evaluated on Continuity of care and other health outcomes (p=< 0.001). Correct identification of one's congenital heart disease defect was associated with certain outcomes, though associations with other health outcomes were mixed.

synapsesocial.com/papers/6a5b39118167787360d24f1e https://doi.org/10.1017/s1047951126111998

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Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience.

Key Points

Study Design

Structured PICO

Main Result

Ask about this paper

Implication

Abstract

Discussion

Cite This Study

Association of diagnosis recognition and self-reported health outcomes in adults with CHD: a report from CHD Project to Understand Lifelong Survivor Experience.

Key Points

Study Design

Structured PICO

Main Result

Ask about this paper

Implication

Abstract

Discussion

Cite This Study

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