2024 成人先天性心脏病／神经病学会议共识声明：成人先天性心脏病的神经认知和心理干预

Neurocognitive and Psychological Interventions for Adults With Congenital Heart Disease: A Consensus Statement From the Adult Congenital Heart Disease/ Neuro 2024 Conference

Dawn Ilardi ID, PhD; Ali N. Zaidi ID, MD; Johanna Calderon ID, PhD; Joy J. Choi, MD; Nadine A. Kasparian ID, PhD; Nancy A. Pike, PhD; Drezden Plotkin, MSF; Corinne Smorra, DSW, MSW, LCSW; Ken Woodhouse, MPA; Michelle Gurvitz, MD, MS†; Adam R. Cassidy ID, PhD†

ABSTRACT: Adults with congenital heart disease (CHD) constitute a growing population with challenges related to cardiovascular and neurological health. Many individuals born with CHD experience neurodevelopmental delays in childhood. Ongoing neurocognitive and psychological concerns impact education, employment, and quality of life. Despite this, interventions to address these issues are largely unexplored. Collaborations among multidisciplinary experts and patient partners culminated at a 2-day Adult Congenital Heart Disease (ACHD)/Neuro Conference (April 2024) to review the current state of knowledge and guide future directions for research and clinical care. Three working groups separately focused on genetics and brain health, characterizing outcomes, and interventions among patients with ACHD. This article focuses on the work of the interventions group. A consensus statement was created to synthesize current knowledge, identify key gaps, and recommend next steps around 5 critical questions designed to guide research and clinical care for interventions with ACHD: (1) What interventions are effective for improving neurocognitive functioning? (2) What interventions are effective for improving psychological wellbeing? (3) What evidence do we have about safety and efficacy of psychotropic medications? (4) What interventions can improve health literacy? (5) What are modifiable facilitators and barriers to accessing high-quality neurocognitive and psychological interventions? Limited research and fragmented health systems hinder interventions in ACHD. Efforts from pediatric congenital heart disease could inform the ACHD community. Although interventions are costly and resource intensive, neglecting neurocognitive and psychological needs could lead to lower quality of life and higher health care costs. By ultimately shifting to prevention and intervention, the ACHD community could facilitate positive outcomes.

Key Words: adult congenital heart disease $\blacksquare$ anxiety $\blacksquare$ depression $\blacksquare$ intervention $\blacksquare$ neurocognitive $\blacksquare$ outcomes $\blacksquare$ psychological

Adults with congenital heart disease (CHD) represent a growing and diverse patient population$^{1}$ with challenges related to cardiovascular$^{2}$ and neurological health.$^{3}$ Advances in medical care have dramatically improved survival rates for individuals

born with heart disease, and as a result, a growing number of individuals with CHD are living into adulthood.$^{4}$ For those with CHD, risks for neurodevel- opmental delays in childhood are high,$^{5}$ and there is increasing recognition of the complex and often

Correspondence to: Dawn llardi, PhD, Emory University, Department of Pediatrics, 2200 Century Parkway, NE, Ste 435, Atlanta, GA 30345. Email: dawn. ilardi@pedneurocenter.com *D. Ilardi and A. N. Zaidi are co-first authors. $^{1}$M. Gurvitz and A. R. Cassidy are co-senior authors. This manuscript was sent to Daniel E. Clark, MD, MPH, Associate Editor, for review by expert referees, editorial decision, and final disposition. For Sources of Funding and Disclosures, see page 10. © 2026 The Author(s). Published on behalf of the American Heart Association, Inc., by Wiley. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. JAA is available at: www.ahajournals.org/journal/jaha J Am Heart Assoc. 2026;15:e042921. DOI: 10.1161/JAHA.125.042921

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# Nonstandard Abbreviations and Acronyms

ACHD adult congenital heart disease CNOC Cardiac Neurodevelopmental Outcome Collaborative

underaddressed neurocognitive and psychological challenges faced by this population.$^{3,6}$ In adulthood, challenges related to cognitive function, mental health, health literacy, and the ability to navigate health care systems can significantly impact education and employment, self-care, quality of life, and well-being.$^{7,8}$ Despite the multiple challenges this population faces, effective interventions to improve neurocognitive and psychological functioning remain largely unexplored in adult CHD (ACHD), whereas these efforts are growing for pediatric CHD.$^{9}$ Heterogeneity in patients with ACHD, including varying disease severity, age of diagnosis and intervention, surgical era, medical comorbidities (eg, genetic disorder, cerebral palsy, epilepsy), and the long-term effects of cardiac interventions, contributes to complex neurocognitive and psychological concerns that are often overlooked in ACHD care.$^{6}$ There is a critical need for a systematic approach to identifying and addressing neurocognitive and psychological concerns for patients with ACHD. Available literature is, however, limited by small sample sizes, inconsistent methodologies, and a lack of longitudinal data, resulting in significant gaps that

hinder the development of evidence-based strategies to support and advance clinical care for patients with ACHD.

Following monthly virtual meetings from December to March, multidisciplinary experts and patient partners (see Table 1) convened at a 2-day ACHD/Neuro Conference in April 2024 in Atlanta, Georgia, to evaluate current knowledge and identify critical gaps in neurocognitive and psychological research related to ACHD. The format for this project was modeled after a similar initiative within pediatric cardiology.$^{9}$ Members included experts in adult and pediatric cardiology, cardiovascular surgery, nursing, psychiatry, psychology, neuropsychology, neonatology, neuroradiology, neurology, and neuroscience, as well as adults with CHD. Three working groups focused on genetics and brain health, characterizing outcomes, and interventions, to guide the next decade of research and clinical care with ACHD. Supported by the Meil Family Foundation Research Award, the initiative aimed to identify key research themes and 5 critical questions for future priorities. This article highlights the work of the Interventions Working Group (see companion consensus papers from the Genetics and Brain Health and Characterizing Outcomes Working Groups), offering a summary of existing knowledge, significant gaps, and proposed next steps regarding neurocognitive and psychological interventions (see Table 2). These “next steps” aim to inspire dialogue, strengthen collaboration across the ACHD community, and drive meaningful improvements in care and outcomes.

|Working group participant|Role/discipline|Institution/organization|Location| |---|---|---|---| |Dawn llardi*|Pediatric neuropsychologist|Emory University|Atlanta, GA, USA| |Ali N. Zaidi*|Pediatric cardiologist, adult cardiologist, adult CHD specialist|Mount Sinai Fuster Heart Hospital, Icahn School of Medicine at Mount Sinai|New York, NY, USA| |Johanna Calderon|Pediatric neuropsychologist|University of Montpellier|Montpellier, France| |Joy J. Choi|Adult psychiatrist|University of Rochester Medical Center|Rochester, NY, USA| |Nadine A. Kasparian|Pediatric psychologist|Cincinnati Children's Hospital Medical Center|Cincinnati, OH, USA| |Nancy A. Pike|Nurse practitioner|Children's Hospital Los Angeles and University of California|Irvine, CA, USA| |Drezden Plotkin|Adult with CHD|Adult Congenital Heart Association|Nashville, TN, USA| |Corrine Smorra|Adult with CHD|Adult Congenital Heart Association|Birmingham, MI, USA| |Ken Woodhouse|Adult with CHD|Adult Congenital Heart Association|Knoxville, TN, USA| |Adam R. Cassidy†|Pediatric neuropsychologist|Mayo Clinic|Rochester, MN, USA| |Michelle Gurvitz†|Pediatric cardiologist, adult CHD specialist|Boston Children's Hospital and Brigham and Women's Hospital|Boston, MA, USA|

CHD indicates congenital heart disease. *Working group co-lead. †Co-principal investigator.

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CRITICAL QUESTIONS

Question 1: What Interventions Are Effective for Improving Neurocognitive Functioning in Patients With ACHD?

Existing Knowledge

Neurodevelopmental delays and disorders in children and adolescents with CHD have been widely recognized.$^{5}$ More recently, it has become clear that concerns may not resolve and can still be evident in young- and middle-aged adults with CHD.$^{6}$ Neurocognitive difficulties vary on the basis of CHD complexity$^{10}$,$^{11}$ including general cognition, academic achievement, executive functioning, visuospatial skills, memory, quality of life, social cognition, and psychological functioning,$^{12}$⁻$^{14}$ and affect education, employment, and disability status.$^{15}$ For many, there is also an interplay between neurocognitive and psychological symptoms, such as when executive dysfunction and depression/anxiety exacerbate one another.$^{16}$ Neuropsychological sequelae in patients with ACHD have been linked to structural brain abnormalities, including white matter injury and lower structural brain volumes.$^{6}$,$^{12}$ Early neurological risks may interact with later cardiovascular morbidities, like heart failure and arrhythmia, further increasing neurocognitive decline.$^{17}$ Early risk for dementia has been linked to ACHD, with studies suggesting that neurocognitive deficits, including impaired executive function and memory, may pre-dispose patients with ACHD to accelerated cognitive decline and neurodegenerative processes later in life.$^{18}$

In the general adult population without CHD, there is growing evidence that physical fitness and short- and long-term exercise programs are associated with better neurocognitive and psychological health,$^{19}$ as well as lower risk of neurodegenerative diseases.$^{20}$ Modest improvements are shown for aspects of attention, executive functioning, and memory.$^{21}$ Other efficacious interventions to address neurocognitive health in the general population include mind-body exercises, such as meditation.$^{19}$ Multimodal interventions that couple physical activity with neurocognitive intervention may have greater efficacy and sustained effects.$^{22}$ Among individuals with mild to moderate dementia in the general population, a growing number of randomized controlled trials (RCTs) involving cognitive rehabilitation show substantial variability in methodology that limits generalizability. For example, a recent review in the general population with mild to moderate dementia suggests weak evidence for improvement in specific cognitive processes (eg, attention, memory), but stronger support for improved functional abilities and perceived well-being following cognitive remediation.$^{23}$

As for the CHD population specifically, a limited number of studies in pediatric CHD and other types

of heart disease provide inconclusive evidence about how cardiac rehabilitation or physical exercise improves cognition, executive functioning, or quality of life.$^{24}$ Studies have shown that remission from depression is associated with improvements in exercise capacity and lifestyle factors, mental health, and quality of life. In contrast, nonremitters continued to report low mental well-being and quality of life, alongside a decline in exercise capacity, a well-established prognostic marker in patients with ACHD.$^{25,26}$ Exercise capacity in CHD varies on the basis of disease severity and co-existing conditions, with prevalent concerns about reduced physical activity and exercise-related fear that often begins in childhood. These factors significantly impact overall health and physical function in patients with ACHD.$^{27,28}$

Significant Gaps

The effectiveness of interventions to address neurocognitive concerns in ACHD remains insufficiently evaluated. While physical exercise and mind-body exercises show promise for improving mild neurocognitive concerns in the general population, their applicability to ACHD is uncertain, as is the role of exercise fear and intolerance. Similarly, cognitive rehabilitation for mild to moderate dementia has not been studied in patients with ACHD. The feasibility of these interventions in acute or outpatient settings is unknown. Additionally, it is unclear how these interventions might impact the interaction between neurocognitive and psychological symptoms, such as how anxiety reduction could improve decision making.

Next Steps

$\bullet$ ACHD centers offering neurocognitive interventions should publish descriptive or retrospective data on patients who have undergone neurocognitive training, rehabilitation, or physical exercise, including lessons learned. This information could help inform new service delivery. $\bullet$ Clinical scientists working with patients with ACHD should adapt and implement empirically supported neurocognitive interventions used with other medical populations. This includes consideration of exercise limitations and fears that are common in patients with ACHD. $\bullet$ ACHD centers should consider RCTs with control conditions when evaluating the efficacy of neurocognitive interventions. Outcome measurement could include cognitive processes, neurological correlates, functional capabilities, and well-being. To inform clinical referrals and risk stratification, patient-specific factors (eg, cognitive reserve, family) and risks (eg, medical, surgical) should be considered.

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$\bullet$ Researchers should partner to leverage existing outcome registries. For example, the CNOC (Cardiac Neurodevelopmental Outcome Collaborative)$^{29}$ registry could be used to recruit young adult participants for targeted neurocognitive interventions and track longitudinal changes.

Question 2: What Interventions Are Effective for Improving Psychological Well-Being in Patients With ACHD?

Existing Knowledge

A growing literature demonstrates the high prevalence of psychological symptoms and disorders (eg, anxiety, depression, posttraumatic stress) in patients with ACHD, with symptoms affecting quality of life,$^{13,30-32}$ health-related self-management, and retention in care.$^{33}$ While the stressful and sometimes traumatic effects of living with a complex chronic medical condition are among the risks for the development of psychological symptoms/disorders, it is further understood that many individuals with CHD were raised in families that also experience high rates of psychological symptoms (eg, anxiety, depression, posttraumatic stress) and life stressors (eg, financial strain due to medical expenses).$^{33,34}$ Data on the efficacy of psychological interventions in patients with ACHD are sparse and methodologically weak. A recent review of 4 intervention-based studies (mindfulness-based stress reduction, resilience training, cardiac rehabilitation) that combined adolescents and adults with CHD with other types of cardiovascular disease found no significant improvements. This review article discusses how interventions without a theoretical framework and reliance on symptom-based assessment without diagnostic cutoff or clinical corroboration are factors that limited efficacy.$^{35}$ A later RCT with group-based cognitive behavioral therapy in patients with ACHD reported a reduction in depressive symptoms with a moderate effect size for the intervention group compared with the control group.$^{36}$ Integrating psychological care into routine ACHD care has also been found to facilitate feasible and timely psychological intervention.$^{37}$

Given the paucity of interventions for patients with ACHD, extrapolation from other populations may be informative, especially given that evidence-based psychological interventions exist for symptoms also occurring in patients with ACHD.$^{32}$ In 2021, the American Heart Association published a scientific statement about the mind-heart-body connection, emphasizing the need for psychological interventions for adults with cardiovascular disease.$^{38}$ A Cochrane systematic review and meta-analysis found that psychological interventions, such as relaxation techniques, self-awareness and

self-monitoring, cognitive restructuring, or emotional support, significantly reduced depressive symptoms, anxiety, stress, and cardiovascular death in adults with coronary artery disease.$^{39}$ More broadly, in adults with and without medical conditions, there are decades of research to support the efficacy of various psychological approaches. Cognitive behavioral therapy, which involves restructuring patterns in one's thinking and behavior, has been shown to improve symptoms of depression, anxiety, and trauma-related disorders.$^{40}$ For posttraumatic stress, eye movement desensitization and reprocessing has shown efficacy for symptom reduction.$^{41}$ Mindfulness-based interventions have also shown effectiveness for reducing stress, depression, and anxiety in those with cardiovascular disease, and neurological changes (eg, neural connectivity, functional activity) are also being explored.$^{42}$ Acceptance and commitment therapy, which helps individuals accept their thoughts and feelings and commit to personally meaningful goals consistent with their values despite psychological difficulties, has demonstrated efficacy for reducing depression, anxiety, and other psychological symptoms associated with heart disease and diabetes.$^{43}$ There is growing evidence to support a center-level approach to the prevention or reduction in health-related stress and psychological symptoms, including trauma-informed care.$^{44}$

Significant Gaps

Existing psychological intervention studies in patients with ACHD have methodological limitations, such as retrospective designs, nonrandomized approaches, provider training, low response and high attrition rates, short follow-up, and limited sample diversity. Additionally, it's unclear how empirically supported interventions (eg, cognitive behavioral therapy, acceptance and commitment therapy, eye movement desensitization and reprocessing) may need to be adapted for ACHD. There are also limited data on the prevalence of substance abuse, eating disorders, suicide, self-harm behaviors, and psychotic symptoms in patients with ACHD, limiting the ability to prioritize intervention.

Next Steps

$\bullet$ Psychological intervention studies should consider multicenter RCTs with clear procedures, validated outcome measures, and diverse participant demographics when assessing the efficacy in patients with ACHD. These trials should monitor outcomes for at least 6 to 12 months following intervention. $\bullet$ Clinicians designing psychological interventions are encouraged to follow a community-based participatory research approach$^{45}$ involving individuals

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with lived experience (patients, peer mentors, family members) to understand the unique needs of patients with ACHD.

$\bullet$ Research is needed about the prevalence of substance abuse, suicidality, self-harm, psychotic symptoms, and eating disorders in patients with ACHD, and how this information should inform intervention priorities.

* Clinical scientists should examine the effectiveness of existing models of integrated, patient-centered, trauma-informed care for ACHD centers. These data are necessary for broader implementation across centers.

Question 3: What Evidence Do We Have for the Safety and Efficacy of Psychotropic Medications in Patients With ACHD?

Existing Knowledge

Psychotropic medications (eg, selective serotonin reuptake inhibitors, stimulants) can be used to support psychiatric symptoms (eg, anxiety, depression, attention-deficit/hyperactivity disorder) commonly experienced in patients with ACHD.$^{13}$,$^{16}$,$^{30}$,$^{46}$ Yet only 1 study has examined the effectiveness of such medications in patients with ACHD, focusing on the use of selective serotonin reuptake inhibitors for depression.$^{47}$ Given this absence of evidence to inform the use of psychotropics in patients with ACHD, providers rely on research and clinical guidelines from other populations, including pediatric CHD,$^{48}$⁻$^{52}$ adults with acquired cardiovascular conditions (eg, heart failure, coronary artery disease),$^{53}$⁻$^{55}$ and the general population.$^{48}$,$^{56}$⁻$^{59}$

In adults with acquired heart disease, selected selective serotonin reuptake inhibitors (ie, escitalopram and sertraline), have been found effective in treating depression without significant adverse cardiovascular events.$^{53-55}$ There are also robust data on the efficacy of stimulants (eg, amphetamine salts, methylphenidate) in reducing attention-deficit/hyperactivity disorder symptoms in the general population and their short-term cardiovascular safety in the CHD population.$^{48-50,57-59}$ However, the long-term cardiovascular safety of stimulants in CHD has yet to be examined, especially for those who were prescribed stimulants since childhood. A recent meta-analysis in a Swedish national cohort reported that medications for attention-deficit/hyperactivity disorder, including stimulants and nonstimulants (eg, guanfacine, atom-oxetine), were associated with increased risk of hypertension and arterial disease, especially in the first 3years of treatment.$^{56}$ While no stimulant-prescribing guidelines exist for ACHD, guidelines for pediatric CHD

recommend cautious use of stimulants in patients with hypertension, tachycardia, known risk of sudden cardiac death, or severe arrhythmia.$^{51,52}$ ECG monitoring is recommended at initiation and dose increase.$^{51}$ One study on ACHD, a single-center retrospective study, found no association between antidepressant use and increased death$^{47}$; however, the study did not stratify risk by medication or CHD type.

Significant Gaps

At the time of writing, no published clinical trials or large prospective studies have examined the efficacy and safety of psychotropic medications in patients with ACHD. This lack of research vastly limits our understanding of their effectiveness for reducing psychiatric symptoms, as well as any potential adverse outcomes. There is a notable absence of retrospective or cross-sectional studies that could begin to establish the presence and strength of such associations. Existing literature does not analyze medications within subgroups of patients with ACHD, each with potentially unique cardiovascular or other medical risks. Consequently, evidence-based prescribing and monitoring guidelines for psychotropic medications are nonexistent in patients with ACHD. Finally, it remains unknown how ACHD prescribing providers are currently practicing and managing these challenges within the context of growing needs.

Next Steps

$\bullet$ Providers from ACHD centers should complete a survey study to describe current prescribing patterns for common psychiatric symptoms (eg, depression, anxiety, posttraumatic stress, attention-deficit/hyperactivity disorder), factors that influence decision making (eg, peer consultation, clinical experience, pediatric studies), and provider priorities for unmet needs in patients with ACHD.

$\bullet$ Research should involve multicenter, demographically diverse longitudinal cohort outcome studies to examine associations between specific medications and longitudinal symptom profiles using empirically supported psychological or neuropsychological measures.

$\bullet$ Clinical scientists should conduct both prospective longitudinal studies and RCTs regarding psychotropic medication across different forms of ACHD. This is key to understanding benefits, risks, and adverse outcomes. Study design should also inform providers about individual-level risk stratification for interactions between medications, other treatments, and noncardiac comorbidities.

Prescribing providers should partner to develop and publish clinical practice guidelines for psychiatric

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medications in patients with ACHD. These are urgently needed to inform cardiologists, psychiatrists, and internists working with patients with ACHD.

Question 4: What Interventions Can Improve Health Literacy in Patients With ACHD?

Existing Knowledge

Between 36% and 88% of adults in the United States have health literacy insufficient to navigate the health care system and promote wellness.$^{60}$ A recent American Heart Association Scientific Statement addressed the critical role of health literacy in adult cardiovascular outcomes, including how it contributes to morbidity, death, health care costs, health disparities, and self-care (eg, treatment adherence, managing symptoms).$^{60}$ The definition of health literacy has evolved to integrate multiple dimensions, antecedents, and consequences, culminating in separate definitions for personal and organizational health literacy adopted by the Healthy People 2030 initiative of the US Department of Health and Human Services$^{61}$:

> Personal health literacy is the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

Organizational health literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others (p. 259)

Assessment of personal health literacy using self-report measures is challenging, with considerations based on time constraints (eg, 1–22 minutes to complete), setting (inpatient versus outpatient), patient population, language, and modality (eg, verbal, paper, or digital).$^{62}$ The online Health Literacy Tool Shed from Tufts Medicine shares different health literacy measures, with the ability to filter by patient population, administration time, language(s), and more.$^{63}$

Interventions to address health literacy have grown in recent years. A review of 22 intervention studies between 2018 and 2020 across 9 countries and spanning multiple health conditions (eg, cancer, heart failure) identified 12 interventions that improved health literacy and 13 that improved health behaviors (eg, self-care).$^{64}$ Examples of interventions included standardized patient education, strengthening self-management or health behaviors, improving

patient-provider interactions (e.g., summarizing and teaching back techniques), technologies or resources to improve sharing of health information (eg, Adult Congenital Heart Association, Personal Health Passport).$^{65,66}$ Intervention approaches varied widely on the basis of content, time commitment, group or individual sessions, in-person versus online format, and use of technology or social media as well as outcome measures.$^{64,67}$

In addition to addressing personal health literacy, key attributes of a health-literate organization$^{68}$ help guide interventions to address the role of providers and health systems.$^{69}$ Both personal and organizational health literacy interventions have the potential to reduce the impact of low socioeconomic status on poor health outcomes, with extensive research supporting health literacy as a complex mediator of health outcomes.$^{70,71}$

Health literacy interventions specific to adult cardiology populations have focused on cardiac disease prevention,$^{72}$ heart failure,$^{73}$ cardiac rehabilitation,$^{74}$ and coronary artery disease.$^{75}$ Among CHD, high rates of neurodevelopmental delays, along with complex long-term self-care demands, suggest that health literacy should be an intervention focus.$^{8}$ An assessment of needs among parents of children with CHD indicated gaps in preparedness, and parent-focused interventions for pediatric CHD have since emerged to address caregiver education.$^{76,77}$ Health literacy interventions for patients with ACHD are extremely limited. One study focused solely on standardized education, but the target goal was not met for 9 of 10 patients.$^{77}$ Multiple factors, including modifiable elements like self-efficacy, depressive symptoms, and perceived family support, influence self-care and should be considered when designing interventions.$^{33,78}$

Significant Gaps

Health literacy priorities for patients with ACHD and their providers are largely unknown due to the lack of needs assessment. It is unclear if existing health literacy interventions can be effectively generalized to patients with ACHD. Patient-specific factors, such as CHD type, co-occurring conditions (eg, genetic conditions, heart transplant, stroke, intellectual disability), and the timing of diagnosis, may influence the effectiveness of health literacy interventions. Additionally, risk and protective factors related to caregivers, siblings, and communities are also unclear, especially for those treated during childhood. The connection between health literacy and social drivers of health (eg, economic stability, access to care, neighborhood and environment, racism and discrimination) is unknown for patients with ACHD, which limits the approaches that organizations can take to improve health literacy.

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Next Steps

$\bullet$ Research should examine the validity and reliability of health literacy and eHealth literacy measures for patients with ACHD, incorporating input from patients, providers, and family. Studies should explore how health literacy changes with age and care setting using standardized surveys, focus groups, and crowdsourcing to ensure diverse representation in measure development.

$\bullet$ Studies should explore patient-specific factors in patients with ACHD that may affect health literacy intervention effectiveness, including disease type, co-occurring conditions, family dynamics, sociocultural factors, mental health, and neurocognitive abilities. Use surveys, interviews, and focus groups to assess the fit of existing interventions.

* Clinical scientists are encouraged to partner with patients, providers, and administrators to pilot a CHD-oriented health literacy intervention, tailored to specific settings and literacy levels, and prioritizing feasibility and sustainability. A subsequent RCT with pre- and post-intervention assessments should then be conducted to more definitively determine intervention efficacy.

* Pediatric and adult health care system collaborations for research and clinical care are critical to understand the longitudinal nature of health literacy, the impact of family and community, and the role of pediatric transition programs. Improved knowledge in these areas can help inform future directions.

Question 5: What Are Key Modifiable Facilitators and Barriers to Accessing High-Quality Neurocognitive and Psychological Interventions in ACHD Care?

Existing Knowledge

An estimated 39% of young adults with CHD are lost to follow-up between pediatric and adult health care systems, with rates varying by disease severity, geographic region, and other factors.$^{79,80}$ Patients with ACHD report many barriers to follow-up, including insufficient knowledge and education from cardiology providers about follow-up, psychological concerns or symptoms, and poor accessibility (eg, high cost, transportation issues, limited providers).$^{81,82}$ Social factors exacerbate these barriers,$^{83}$ and the number of patients with ACHD far exceeds the low number of providers and centers who provide care for patients with ACHD.$^{84}$

A limited number of institutions have begun navigating these obstacles to provide psychological and neurocognitive services for patients with ACHD, and from them we can learn about patient-specific barriers.

Physical factors such as CHD severity, surgical history, medications, and associated conditions like pain or fatigue can impact engagement in exercise and rehabilitation programs,$^{26,85,86}$ as well as use of psychotro- pic medications.$^{47}$ These physical factors interact with psychological factors, such as mood, anxiety, post- traumatic stress, health anxiety, and social supports to influence a patient's openness to and engagement with intervention.$^{85,86}$ Other relevant patient factors not specific to CHD include negative perspectives and stigma associated with mental illness and accessing mental health services.$^{87,88}$

Provider- and organization-specific barriers to psychological and neurocognitive interventions identified in other populations include inadequate resources, insufficient professional training, lack of intervention materials, provider shortages, and system fragmentation.$^{89}$ Limited patient education about how to recognize symptoms (eg, of depression, anxiety, and stress), when and how to seek help, how services could be helpful, and how to gain access were all reported as barriers,$^{90,91}$ many of which are related to health literacy. In contrast, facilitators to implementing psychological services for at-risk adult populations include engaging relevant stakeholders and evaluating the progress and quality of services.$^{92}$ Quality of patient-clinician communication is critical to facilitating engagement,$^{93}$ and technology (eg, telehealth) has improved access.$^{94}$ Addressing health literacy can reduce the barriers associated with lower socioeconomic status and thereby facilitate access$^{70}$; however, implementing organizational health literacy programs are a challenge due to barriers associated with culture and leadership, program planning and design, and provider/staff resources.$^{69,95}$ Attending to the perspectives of patients with ACHD about their priorities could serve as a facilitator.$^{81,96}$

Significant Gaps

Beyond patient-specific physical and psychological factors, limited data are available about provider and organizational barriers to accessing psychological and neurocognitive interventions. Anecdotal information from professional collaborations across institutions suggests that most ACHD programs are not providing integrated psychological and neurocognitive services. Thus, it is paramount that we share lessons learned from successful ACHD programs about how to facilitate access to high-quality interventions.

Next Steps

$\bullet$ ACHD centers should partner to conduct a multi-center standardized program survey to inform the cardiology community about existing intervention

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 services, including resources, training, leadership, and funding. Identifying provider and organizational barriers and enablers would inform program development and quality improvement. Model programs could also partner with new programs.

* Clinical scientists should collect information about facilitators and barriers from patients who have previously accessed, are currently accessing, or have never used intervention services. Methods could include surveys, interviews, focus groups, and crowdsourcing in partnership with ACHD patient organizations.

* Institutions should implement alternative intervention service delivery methods (eg, telemedicine and asynchronous online intervention) to address barriers to care. Economic and process evaluations must also be conducted to ensure feasible/sustainable implementation.

* Clinical providers should explore potential partnerships between ACHD national organizations and programs to support online resources (eg, exemplar models and clinical processes; patient resources) that may address barriers.

CONCLUSIONS

Compared with other life-limiting medical conditions, lifesaving cardiac surgical interventions are a relatively recent advancement in CHD, resulting in comparatively young ACHD patient population that is continuing to evolve. However, the limited clinical research available and the fragmented nature of health care, marked by shortages of specialized ACHD providers, dedicated programs, expertise, and patient support services, pose substantial challenges to the effective implementation of psychological and neurocognitive interventions in this growing patient population. Addressing these barriers is essential to improving comprehensive care for individuals with ACHD. The pediatric CHD population faced similar challenges just 2 decades ago but has since developed a robust international collaboration that has catapulted the field forward to improve the quality care for pediatric CHD and their families. Valuable insights from the pediatric CHD community could be adapted and expanded to inform the ACHD community, encompassing a diverse group of stakeholders—including clinical and research

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||Significant gaps|Next steps| |---|---|---| |Critical question 1|Critical question 1|Critical question 1| |What interventions are effective for improving neurocognitive functioning in patients with ACHD?|1. The effectiveness of neurocognitive interventions from the general population have not been explored in ACHD. 2. It is unclear how any interventions (eg, anxiety reduction) may influence the interaction between neurocognitive and psychological vulnerabilities.|1. Publish descriptive or retrospective data on patients with ACHD who have undergone neurocognitive intervention. 2. Adapt (eg, impact of exercise fear on mind-body) and implement empirically supported neurocognitive interventions used with other medical populations. 3. Consider RCTs with control conditions when evaluating the efficacy of neurocognitive interventions. Consider outcome measurement, patient specific factors, and risk stratification. 4. Leverage existing outcome registries, such as with the Cardiac Neurodevelopmental Outcome Collaborative.| |Critical question 2|Critical question 2|Critical question 2| |What interventions are effective for improving psychological well-being in patients with ACHD?|1. Significant methodological limitations affect generalizability and the ability to determine efficacy. 2. Less common psychiatric symptoms need to be understood, including substance abuse, eating disorders, suicide, and self-harm behaviors.|1. Consider multicenter RCTs with clear procedures, validated outcome measures, diverse participant demographics, and follow-up at least 6 to 12 mo after intervention. 2. Follow a CBPR approach45 involving individuals with lived experience to understand the unique needs of ACHD. 3. Research the prevalence of substance abuse, suicidality, self-harm, psychotic symptoms, and eating disorders in patients with ACHD. 4. Examine the effective of exiting models of integrated, patient-centered, trauma-informed care for ACHD centers.| |Critical question 3|Critical question 3|Critical question 3| |What evidence do we have for the safety and efficacy of psychotropic medications in patients with ACHD?|1. No published clinical trials or large prospective studies have examined the efficacy and safety of psychotropic medications in ACHD. 2. Limited information is available about how to prescribe and monitor risks of medication types across CHD severity.|1. Complete provider survey study to describe current prescribing patterns for common psychiatric symptoms, decision making, and provider priorities for unmet needs in patients with ACHD. 2. Examine associations between specific medications and longitudinal symptom profiles using empirically supported psychological or neuropsychological measures. 3. Conduct both prospective longitudinal studies and RCTs regarding psychotropic medication across different forms of ACHD to describe benefits, risks, and adverse outcomes. 4. Publish clinical practice guidelines for psychiatric medications in patients with ACHD.| |Critical question 4|Critical question 4|Critical question 4| |What interventions can improve health literacy in patients with ACHD?|1. Health literacy needs are unclear, as is the generalizability of existing interventions. 2. Patient- and disease-specific factors may affect health literacy needs, along with caregiver and community factors. 3. Social determinants of health influence health literacy and act as barriers to effective intervention.|1. Examine the validity and reliability of health literacy and eHealth literacy measures with input from patients, providers, and family; explore across age and setting. 2. Explore patient-specific factors in patients with ACHD that affect intervention effectiveness. 3. Pilot a CHD-oriented health literacy intervention, tailored to settings and literacy levels, with subsequent RCTs. 4. Facilitate pediatric and adult health care system collaborations, which are critical to understand the longitudinal nature of health literacy.| |Critical question 5|Critical question 5|Critical question 5| |What are the key modifiable facilitators and barriers to accessing high-quality neurocognitive and psychological interventions in ACHD care?|1. There are limited data on barriers faced by providers and organizations. 2. Most centers do not provide integrated psychological and neurocognitive intervention services. 3. There is limited information available from well-established programs and centers that have successfully facilitated access to high-quality psychological and neurocognitive services.|1. Conduct a multicenter standardized program ACHD survey to inform the cardiology community about existing intervention services. 2. Collect information about facilitators and barriers from patients who have previously accessed, are currently accessing, or have never used intervention services. 3. Implement alternative intervention service delivery methods (eg, telemedicine and asynchronous intervention) to address barriers. 4. Explore partnerships with ACHD national organizations and programs to support online resources that may address barriers.|

ACHD indicates adult congenital heart disease; CHD, congenital heart disease; CBPR, community-based participatory research; CNOC, Cardiac Neurodevelopmental Outcome Collaborative; and RCTs, randomized controlled trials.

professionals as well as patients and their advocates, leveraging systems and data that already exist (eg, neurodevelopmental data in the CNOC registry; also see the Figure). One critical lesson learned from

interventions in pediatric CHD is that collaborations need to go beyond professional stakeholders to include community-based participatory research with patients and families.$^{97}$ These unique collaborations inform

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intervention design and goals, as well as strategies to address accessibility issues associated with social determinants of health.$^{83}$

While this article focused on interventions for patients with ACHD, the relation between assessment and intervention for psychological and neurocognitive concerns is bidirectional. Neuropsychological assessment can identify concerns needing intervention, and intervention requires ongoing assessment to monitor progress. Additionally, interventions may reveal findings requiring further assessment. Readers are referred to the recommendations by the Characterizing Outcomes ACHD/Neuro 2024 working group to appreciate the role of assessment. The dynamic association between assessment and intervention also needs to be addressed in the future of clinical care.

Neurocognitive and psychological interventions are costly and resource intensive, with limited funding and provider shortages hindering implementation across ACHD care systems. However, the costs of neglecting the needs of the ACHD population are much greater. Poor psychological health, neurocognitive impairments, and reduced health literacy can lead to lower quality of life and higher health care and societal costs. While existing knowledge on interventions is limited, there are opportunities to make significant improvements. By shifting toward early intervention and moving beyond the traditional medical model focused solely on treatment of problems, the ACHD community could develop more effective models of care that support long-term well-being and functional outcomes for individuals living with ACHD.

ARTICLE INFORMATION

Received April 6, 2025; accepted September 29, 2025.

Affiliations

Department of Pediatrics, Emory University, Atlanta, GA (D.I.); The Mount Sinai Fuster Heart Hospital, Icahn School of Medicine, New York, NY (A.N.Z.); University of Montpellier, Montpellier, France (J.C.); University of Rochester Medical Center, Rochester, NY (J.J.C.); Heart and Mind Wellbeing Center, Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati, H.Dan (A.K.); Children's Hospital and Angeles and University of California, Irvine, CA (N.A.P.); Adult Congenital Heart Association, Media, PA (D.P. C.S., K.W.); Boston Children's Hospital and Brigham and Women's Hospital, Boston, MA (M.G.); and Departments of Psychiatry & Psychology and Pediatric & Adolescent Medicine, Mayo Clinic, Rochester, MN (A.R.C.).

Sources of Funding

Funding support was provided by the Meil Family Foundation Research Award for Neurocognitive Studies.

Disclosures

None.

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