Identifying Vulnerability in Adults With Congenital Heart Disease: A Mixed-Methods Examination of Psychosocial Experiences

Abstract

Background

With increased survival into adulthood, psychosocial research in adults with congenital heart disease (ACHD) has become increasingly important. However, existing studies often rely on isolated quantitative metrics or small qualitative samples, limiting insight into patients’ lived experiences and potential variation across demographic subgroups. To address this gap, this mixed-methods study integrated quantitative survey data with qualitative thematic analysis to characterize psychosocial experiences among ACHD and examine differences by disease complexity, sex, and age.

Methods

A national online survey was conducted among Dutch ACHD (≥ 16 years) recruited via the national patient association (Oct–Dec 2024). The survey formed part of a broader psychosocial and sexual health questionnaire. For the present analysis, items on demographic characteristics and psychosocial experiences were used. Closed-ended responses were analyzed descriptively, and open-ended responses were analyzed using inductive thematic analysis.

Results

A total of 259 participants responded (68.8% female; 47.1% aged 26–40). Disease complexity was severe in 38.6%, moderate in 47.6%, and mild in 13.8%. Nearly all participants (94.1%) reported at least one psychosocial concern, most related to physical endurance (64.7%), reproduction (64.0%), and visible scarring (47.8%), alongside frequent social concerns such as difficulty keeping up with peers (53.7%), relationship challenges (47.8%), fear of rejection (39.0%), and worries about others’ judgement (38.2%). Difficulties were more common among females and those with more complex CHD. A developmental pattern emerged, with physical and social insecurities arising in childhood and adolescence, and reproductive and employment-related concerns emerging in young adulthood. Although many insecurities stemmed from earlier experiences, participants described effective coping strategies and positive meaning-making.

Conclusions

Despite considerable resilience, psychosocial difficulties in ACHD are heterogenous and present across all patient groups, with certain subgroups showing heightened vulnerability. Identifying these patients and understanding the origins of their concerns is essential for timely support. Moreover, early onset and age-specific patterns emphasize the need for joint involvement of pediatric and adult cardiologists in recognizing psychosocial concerns and ensuring continuity during transition, as these experiences may shape long-term psychosocial trajectories.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12872-026-06028-9.

Introduction

Congenital heart disease (CHD) is the most common congenital anomaly, affecting about 1% of newborns [1]. Advances in medical and surgical care have markedly improved survival, with approximately 85% of children with CHD now reaching adulthood [2]. As this population of adults with congenital heart disease (ACHD) continues to grow, it has become increasingly important for research to move beyond survival and examine long-term impact.

ACHD are at an increased risk of psychosocial difficulties due to interacting biological, psychological and social factors [3–5], consistent with the biopsychosocial model of illness [6]. These influences include, but are not limited to, chronic symptoms and uncertainty about prognosis, body-image concerns, and social challenges such as stigma and reduced participation in daily activities. Together, these factors may predispose individuals with ACHD to increased anxiety and depression, as well as a reduced quality of life [7–9].

Existing research on psychosocial functioning in ACHD has mainly examined isolated quantitative outcomes such as quality of life or symptoms of anxiety and depression, with inconsistent findings [10–12]. Qualitative studies have provided valuable patient-reported experiences, but these studies are typically small, subgroup specific and generate fragmented insights that are difficult to translate into clinical practice [4, 13]. Consequently, an integrated understanding of psychosocial concerns in ACHD remains lacking, including their nature, prevalence across subgroups, and underlying mechanisms.

This gap is particularly important because ACHD patients form a highly heterogeneous group with distinct care needs and diverse psychosocial profiles [5]. Healthcare providers therefore require clearer insight into which subgroups are more vulnerable and which underlying factors shape their experiences, to better tailor support and offer guidance.

Therefore, this study aims to investigate the psychosocial impact of CHD in adults by integrating quantitative and qualitative data to capture both the prevalence and lived experience of psychosocial concerns. Specifically, it examines fears and insecurities, coping, and social experiences, and explores differences by disease complexity, sex, and age. Using this mixed-methods approach, the study addresses three questions: (1) which fears and insecurities adults with CHD experience and how they cope with them; (2) how they perceive the impact of their condition on social experiences; and (3) what positive meanings or benefits they attribute to living with their condition.

Methods

Study design and participants

A cross-sectional national online survey was conducted among adults (≥ 16 years) with a self-reported diagnosis of CHD in the Netherlands. Participation was voluntary, anonymous, and required sufficient Dutch literacy to complete the questionnaire. No additional exclusion criteria were applied. The study was jointly conducted by the Dutch Patient Association for Congenital Heart Disease (PAH) and the Leiden University Medical Center.

Questionnaire development

As no validated instrument was available, a study-specific questionnaire was developed by a multidisciplinary team (psychologist, urologist-sexologist, cardiologist-sexologist) in collaboration with the patient association, based on study objectives, literature review, and prior research. The questionnaire was pilot tested by 20 individuals (clinicians and association members), and feedback was incorporated.

The full questionnaire included 67 items across five domains. For this study, 16 items on demographics and general emotions were analyzed (12 closed-ended, 4 open-ended). Corresponding questionnaire items are presented in the appendix. Items were developed in Dutch and translated into English. All questions were optional.

Data collection

The questionnaire was distributed via the patient association’s website from October to December 2024 and promoted through newsletters, social media, and affiliated healthcare professionals. As the association’s membership includes patients as well as parents and others, recruitment extended beyond patients alone. Data were collected anonymously and processed in accordance with privacy regulations.

Data analysis

Quantitative analysis

Quantitative data were analyzed using IBM SPSS Statistics version 29. Descriptive statistics were used to summarize response distributions. CHD complexity was classified as mild, moderate, or severe based on anatomical findings according to the 2020 ESC Guidelines [14] and morphological distribution was described using the Botto classification [15]. Reported age of onset of fears or insecurities was categorized according to Erikson’s developmental stages [16], after which frequencies were calculated.

Qualitative analysis

Open-ended responses were analyzed using inductive thematic analysis [17], with themes derived directly from participants’ statements. A first reviewer coded all responses, assigning statements to one or multiple themes when relevant. Responses that were off-topic or unrelated to the research question were excluded, and the number of excluded responses was reported. Responses that were affirmative but unspecified were included in the “yes” category, and those that did not fit a theme were coded as “other”.

To assess interrater reliability, a second reviewer independently coded a randomly selected subset of responses (10–25% of responses for each item [18]). Coding results were then compared to assess agreement and consistency, and discrepancies were discussed to align interpretation.

Coding categories were subsequently refined in an iterative manner to optimize thematic clarity and reduce uncategorized responses. These refinements were guided by the evolving interpretation of the data rather than by interrater discrepancies. All changes were documented and applied consistently across the dataset to ensure analytic transparency and reproducibility. Because the coding scheme was substantially revised during this iterative process, initial discrepancy rates were not informative for the final coding structure and are therefore not reported.

After analysis, themes were presented in a conceptually clustered matrix, supported by frequency counts and illustrative participant quotes. All responses were originally written in Dutch and translated into English.

Handling of missing data

All survey items were optional, resulting in variable amounts of missing data across items. Analyses were conducted using available data only, and the number of valid responses is reported for each item.

Results

Response rate

Between October and December 2024, the questionnaire was distributed via the website of the Dutch Patient Association for Congenital Heart Defects, as well as through a newsletter (~ 1,500 members) and social media. During this period, the website received approximately 26,000 visits, although the number of unique or eligible ACHD is unknown. In total, 259 individuals identifying as ACHD initiated the questionnaire. As the number of eligible individuals reached was unclear, a response rate could not be determined.

Participant characteristics

In total, 259 ACHD were included in the analysis (Table 1). Most participants were aged 26–40 years, female, and identified as heterosexual. Disease severity was predominantly moderate to severe, and the majority had undergone cardiac surgery. The morphological distribution across complexity categories is shown in Table 2.

Table 1.

Participant characteristics

Characteristic	n (%)
Age
16–18 years	6 (2.5)
19–25 years	26 (10.9)
26–40 years	112 (47.1)
41–60 years	76 (31.9)
>60 years	18 (7.6)
Sex
Male	75 (31.4)
Female	164 (68.6)
Gender identity
Male	75 (31.5)
Female	160 (67.2)
Other	3 (1.3)
Sexual orientation
Heterosexual	206 (86.6)
Homosexual	5 (2.1)
Bisexual	19 (8.0)
Other	8 (3.4)
Complexity of disease
Mild	29 (13.8)
Moderate	100 (47.6)
Severe	81 (38.6)
Cardiac interventions
Surgical	167 (75.9)
Catheterization	3 (1.4)
None	50 (22.7)

n varies due to item-level missing data

Table 2.

Distribution of morphological categories of CHD across complexity levels

Morphological category	Mild (n = 21)	Moderate (n = 100)	Severe (n = 81)
Conotruncal defects	0 (0.0)	57 (57.6)	13 (16.0)
Septal defects	11 (37.9)	8 (8.1)	2 (2.5)
Right-sided obstructive lesions	2 (6.9)	3 (3.0)	6 (7.4)
Left-sided obstructive lesions	8 (27.6)	16 (16.2)	2 (2.5)
Anomalous pulmonary venous return	0 (0.0)	1 (1.0)	0 (0.0)
Univentricular heart	0 (0.0)	0 (0.0)	42 (51.9)
Complex combined defects	0 (0.0)	0 (0.0)	10 (12.3)
Other	8 (27.6)	14 (14.1)	6 (7.4)

Values are presented as n (%). Certain categories (e.g., univentricular heart and complex combined defects) inherently fall into specific severity levels

Missing data

Response rates varied across items, ranging from ~ 90% for demographic questions to ~ 50% for items on feelings and emotions. For the qualitative analysis, five responses were excluded as off-topic or unrelated (3/127 for positive meaning-making, 0/129 for feeling different, and 2/116 for fears materializing).

Fears and insecurities

Respondents were asked to indicate which fears or insecurities they experienced, with multiple response options allowed. Most participants reported fears or insecurities related to life domains affected by their CHD (94.1%, n = 128), with over half identifying the condition itself as a direct source (57.6%, n = 76). As shown in Fig. 1, fears occurred across all domains, particularly related to physical endurance (64.7%, n = 88), reproduction (64.0%, n = 87), and visible scarring (47.8%, n = 65), with one-third reporting associated shame (31.1%, n = 30). Social insecurities were also common, including difficulty keeping up with peers (53.7%, n = 73), relationship challenges (47.8%, n = 65), fear of rejection (39.0%, n = 53), and concern about others’ opinions (38.2%, n = 52). Employment-related concerns were reported by 31.1% (n = 63). The prevalence of fears and insecurities increased with disease complexity across most domains (Fig. 1).

Fig. 1.

Proportion of participants reporting fears and insecurities, stratified by disease complexity (mild, moderate, severe). Participants with unknown disease complexity (n = 14) were excluded from stratified analyses

Age-related patterns in the onset of fears and insecurities are shown in Fig. 2. Participants were asked to report the age at which these fears or insecurities first occurred. Physical limitations, visible scarring, and difficulty keeping up with peers most often began in childhood, whereas concerns about relationships, others’ opinions, and rejection emerged during adolescence. Employment-related and reproductive concerns were primarily reported to start in young adulthood.

Fig. 2.

Reported age of onset of fears and insecurities, stratified by age category. Panels represent different domains: a relationships; b opinions of others; c rejection by others; d visible scarring; e keeping up with peers; f physical endurance; g employment; h reproduction

Sex differences in fears and insecurities are shown in Fig. 3. Females reported fears more frequently than males across most categories. The largest difference was observed for reproductive concerns (70.4%, n = 69 vs. 47.4%, n = 18). Differences were also seen for relationships, social evaluation, visible scarring, and employment, whereas concerns about keeping up with peers and physical endurance were reported at similar levels by both sexes. Only a small proportion reported having no fears.

Fig. 3.

Proportion of participants reporting fears and insecurities among adults with congenital heart disease, stratified by sex (female and male)

Qualitative analysis explored whether fears or insecurities had materialized (Table 3). The most frequently reported theme was missed opportunities (51.8%, n = 59), including limitations in employment, reproduction, and social activities affecting relationships. Reactions from others (26.3%, n = 30) included negative or dismissive responses, as well as experiences of rejection, bullying, and being underestimated. Additional themes were decreased self-esteem (9.6%, n = 11), mainly related to visible scarring and difficulties initiating relationships, and reduced carefree living (9.6%, n = 11), reflected in worry, anxiety, and a diminished sense of carefree youth. The categories yes (2.6%, n = 3) and other (2.6%, n = 3) captured less specific or uncategorized experiences.

Table 3.

Has any of these fears ever come true?

Theme	n (%)	Illustrative quote
No	22 (19.2%)	No, fortunately they did not (F, 26–40 years, moderate)
Missed opportunities	59 (51.8%)	I couldn’t keep up with my job; I was declared unfit for work and because of my CHD I can’t have children. (F, 26–40 years, severe) Lost friends, missed out on many fun things. (F, 16–18 years, severe)
Reactions of others	30 (26.3%)	Yes, I have heard in a relationship that it is quite a tough idea for the other person that I am ill. (F, 41–60 years, severe) Enough discrimination, not allowed on school trips, not allowed to wear a low neckline, not talked about, compared to people with intellectual disabilities. Enough rejection. (F, 26–40 years, severe) Employer who didn’t take my COVID-19 threat seriously. Colleagues who found my fatigue “annoying.” (F, 26–40 years, moderate)
Decreased self-esteem	11 (9.6%)	I was ashamed of my scars for a long time; I was afraid that people would ask about them. (M, 41–60 years, severe)
Reduction in carefree living	11 (9.6%)	I missed the sense of carefree youth that my peers had, and that some of them still have. (F, 26–40 years, moderate)
Yes	3 (2.6%)	Yes, that may be true compared to a normal person, but I can’t help it. (M, 26-years, severe)
Other	3 (2.6%)	Yes, right after my surgery I had a lot of atrial fibrillation, and because of that my condition was poor. (F, > 60 years, mild)

Percentages were calculated from 114 total responses. As responses could be coded into more than one theme, percentages do not sum to 100%

Key to abbreviations: gender (F female, M male); age category; complexity of CHD

Coping ability was assessed using ordinal response options (e.g., always, sometimes, never). 37.3% (n = 50) of participants reported always being able to cope with fears and insecurities, and 53.7% (n = 72) occasionally; only a minority were unable to cope. When asked about their ability to cope with fatigue, 91.0% (n = 122) reported being able to do so at least occasionally. The proportion unable to cope increased with disease complexity, ranging from 0% in the mild group to 8.2% (n = 5) and 9.3% (n = 4) in the moderate and severe groups, respectively. A similar pattern was observed for fatigue (6.3%, n = 1; 8.1%, n = 5; 17.1%, n = 7).

Social experiences

Quantitative analyses examined concerns about others’ opinions and fear of rejection (Fig. 4), assessed using a frequency scale (ranging from never to always). Most participants reported thinking about others’ opinions about once a month (77.2%, n = 105), with few indicating more frequent preoccupation and none reporting (almost) never. Fear of rejection showed a wider distribution, with about one-third reporting never (33.8%, n = 46), almost never (28.7%, n = 39), or sometimes (27.9%, n = 38). Psychological concerns did not differ systematically by disease complexity or sex but were slightly higher among younger adults and lower in older adults.

Fig. 4.

Frequency of concern about others’ opinions of the disease and fear of rejection, stratified by disease complexity, sex, and age group. Panels represent stratification by a disease complexity, b sex, and c age group. Participants with unknown disease complexity (n = 14) were excluded from disease complexity–stratified analyses

Participants could select multiple social sources from which they had felt misunderstood. Feelings of misunderstanding were commonly reported, with only a small proportion reporting always feeling understood (28.1%, n = 29). Misunderstanding was most often attributed to friends (39.1%, n = 52) and teachers (38.3%, n = 51), followed by family, employers, and healthcare providers (all 33.8%, n = 45), colleagues (32.3%, n = 43), and strangers (27.1%, n = 36), and was least reported for parents (15.9%, n = 21).

As shown in Fig. 5, participants with more severe disease reported higher levels of misunderstanding. Females and younger adults also reported higher levels, particularly in interactions with friends, teachers, and healthcare providers, while frequencies decreased with age.

Fig. 5.

Proportion of participants reporting feeling misunderstood by different conversation partners among adults with congenital heart disease, stratified by disease complexity, sex, and age group. Panels represent stratification by a disease complexity, b sex, and c age group. Participants with unknown disease complexity (n = 14) were excluded from disease complexity–stratified analyses

Qualitative analysis explored experiences of feeling different from others (Table 4). The most frequently reported theme was outlook on life (38.8%, n = 50), with participants describing increased awareness of mortality, greater appreciation of life, and more conscious lifestyle choices, alongside sadness about not living as carefree as peers. Physical limitations were also common (36.6%, n = 46), particularly difficulties keeping up with peers in childhood, sometimes persisting into adulthood and affecting social activities.

Table 4.

Did you ever feel different from others?

Theme	n (%)	Illustrative quote
No	11 (8.5%)	Generally not. (F, 26–40 years, moderate)
Outlook on life	50 (38.8%)	Others make a mountain out of a molehill, considering what I’ve been through. (M, 41–60 years, moderate) It has made me enjoy life more, live more consciously and gratefully, and develop a certain degree of empathy that I might not have had otherwise. (F, 26–40 years, moderate)
Physical limitations	46 (36.6%)	Constantly, when I exert myself, I notice that something is wrong. For the past two years I’ve suddenly had severe arrhythmias, so the uninhibited life I had created for myself is essentially over. I can no longer just go on a spontaneous trip, stay out late, or smoke a joint if I want to. That makes me feel sad. (M, 26–40 years, severe) I’ve always felt like a burden, as if others had to adjust to me, especially since childhood. (F, 26–40 years, severe)
Limitations in life choices	17 (13.2%)	Around 30, I noticed I couldn’t keep up with life milestones; having children, physical decline, and even getting a mortgage are more difficult. (F, 26–40 years, severe)
Reactions from others	13 (10.1%)	Previously it was mainly because peers asked what was wrong with me and why I had it, as they didn’t. (F, 26–40 years, moderate)
Visible scarring	12 (9.3%)	As a child I was ashamed of my scars and tried to hide them because they made me feel different. Now I see them as part of who I am. (F, 26–40 years, severe)
Yes	17 (13.2%)	I sometimes feel different from others, but not in a negative way. (F, 41–60 years, mild)
Other	5 (3.9%)	I always found it very unpleasant when I had to go to the hospital for check-ups because it meant I would miss school. At the time, I thought that was ‘unfair.’ (F, 26–40 years, moderate)

Percentages are calculated from 129 total responses. As responses could be coded into more than one theme, percentages do not sum to 100%

Key to abbreviations: gender (F female, M male); age category; complexity of CHD

Additional themes included others’ reactions (10.1%, n = 13), visible scarring (9.3%, n = 12), and limitations in major life choices (13.2%, n = 17), such as relationships, education, and career progression. The categories yes (13.2%, n = 17) and other (3.9%, n = 5) captured less specific or uncategorized experiences.

Positive meanings

Qualitative analysis explored positive meanings attributed to living with congenital heart disease (Table 5). One quarter of participants (24.4%, n = 30) reported no positive outcomes. Among those who did, living more mindfully (38.8%, n = 50) was most frequently mentioned, including greater appreciation of life and loved ones. Personal growth (27.1%, n = 35), such as resilience and empathy, and social growth (23.5%, n = 29), often through connections with others with the same condition, were also common. Participants also described strengthened relationships due to increased vulnerability or shared health concerns. The categories yes (0.1%, n = 1) and other (3.3%, n = 4) captured less specific or uncategorized experiences.

Table 5.

Has your heart condition brought anything positive?

Theme	n (%)	Illustrative quote
No	30 (24.4%)	No, I find it difficult to associate anything positive with my heart condition. (F, 26–40 years, severe)
Living more mindfully	50 (38.8%)	You live more intensely and understand much better the value of life and what truly matters; you learn early on to fight for your life, and you live more consciously and healthily. (F, 41–60 years, mild)
Personal growth	35 (27.1%)	Strong character and perseverance. (F, 41–60 years, severe) I think that because of my heart condition I stand more firmly in life and have become more empathetic. (F, 26–40 years, severe)
Social growth	29 (23.5%)	I certainly have friends whom I initially got to know as fellow Fontan patients. (F, 26–40 years, severe) Because of my heart condition I have learned to be vulnerable, and this makes other people open up as well, which deepens the connection. (F, 41–60 years, unknown)
Positive care experiences	5 (4.1%)	The trips to the hospital have made me experience hospitals as very pleasant, safe places, a place where I can come home and be well cared for. (F, 26–40 years, moderate)
Yes	1 (0.1%)	My heart condition has shaped my entire life in a positive way. (M, 41–60 years, moderate)
Other	4 (3.3%)	Sometimes, precisely because of my heart condition, wonderful opportunities come my way. (F, 26–40 years, severe)

Percentages are calculated from 123 total responses. As responses could be coded into more than one theme, percentages do not sum to 100%

Key to abbreviations: gender (F female, M male); age category; complexity of CHD

Discussion

Overview of key findings

This study adds to existing literature by applying a mixed-methods approach to examine the psychosocial impact of CHD in adults, linking prevalence to lived experience. It assessed fears, social impact, coping and meaning-making across sex, age, and disease complexity, and uniquely identified a developmental trajectory of concerns across life stages. Despite their high prevalence, many individuals reported effective coping and positive meaning-making, reflecting a heterogeneous spectrum of experiences.

Developmental trajectory of fears and insecurities

Our results show that nearly all participants reported at least one fear or insecurity related to their condition, most commonly concerning physical endurance and reproductive health. Many described concrete limitations in daily life, indicating that these concerns reflect lived experiences rather than hypothetical worries. This aligns with prior studies showing a substantial psychosocial burden in ACHD populations [5, 19, 20].

Notably, our findings suggest a developmental pattern in these concerns. Participants reported physical worries emerging in childhood, followed by social insecurities during childhood or adolescence, and employment- and reproduction-related concerns in young adulthood, consistent with known developmental tasks [4, 16]. Psychosocial difficulties appear to arise before adolescence, suggesting that early physical limitations already shape psychosocial experiences in childhood.

While previous research has documented neurocognitive and social vulnerabilities in children with CHD, their lived experiences remain underexplored [21–23]. Evidence from other chronic conditions indicates that participation involves not only engagement in activities but also a sense of belonging and keeping pace with peers [24]. Limitations associated with CHD may disrupt these dimensions, contributing to psychosocial burden. Supporting this, Horner et al. [4] reported that many adults with CHD recall teasing, rejection, and feelings of inferiority during childhood.

These early-emerging concerns underscore the need for timely psychosocial support. The transition to adult care represents a particularly vulnerable period [25], as young adults face the dual task of becoming independent while also learning to integrate CHD into their identity and manage their health on their own. At a time when they are shaping who they are, planning their future, and navigating key milestones, CHD adds weight to every step [24, 25]. This highlights the importance of coordinated care between pediatric and adult services to address life-stage-specific challenges.

Differences across sex and disease complexity

Fears and insecurities were reported more frequently by women and by individuals with more complex CHD. In women, this may relate to reproductive concerns and broader sex differences in anxiety and emotional expression [26–28], while higher fear levels in complex CHD likely reflect greater medical burden [14]. However, concerns were present across all subgroups, indicating a gradient rather than categorical distribution. Furthermore, lower male participation may reflect known differences in help-seeking and survey engagement [29, 30], indicating the need for improved inclusion of men in psychosocial research and care.

Social experiences and interpersonal challenges

Beyond these concerns, thoughts about others’ opinions were nearly universal. The high prevalence of these social concerns is consistent with prior reports of stigmatization, reduced social participation, and bullying in ACHD [3, 4, 12] and aligns with our qualitative finding that many participants feel “different” because of their condition.

Many participants felt misunderstood, particularly by peers, extended family, or teachers. This pattern likely reflects the largely “invisible” nature of ACHD, which can lead to underestimation of symptoms and limitations by those less closely involved, as seen in studies in other chronic illness populations [31, 32]. This was more common in individuals with complex disease. Notably, one-third also reported misunderstanding by healthcare providers, suggesting that psychosocial concerns may be insufficiently recognized in clinical care.

Coping and positive meaning-making

Despite prevalent fears and social concerns, most participants reported effective coping and signs of positive psychological adaptation. While one-quarter reported no positive meaning, others described personal growth, a changed outlook on life, or meaningful connections, which are known to support quality of life and psychological well-being [10, 11].

Clinical implications

These findings support integrating a biopsychosocial model into CHD care [6], with proactive attention to psychosocial needs across life stages by both pediatric and adult cardiologists, particularly during transition and in women and patients with complex disease. Given that many participants felt misunderstood, including by healthcare professionals, further research is needed to improve communication and identify care practices that best support psychosocial well-being in ACHD.

Strengths and limitations

Strengths of this study include the large sample size and recruitment through a national patient association, enabling broad reach, high participant engagement, and reduced social desirability bias compared with clinician-based recruitment. In addition, the use of novel questions allowed exploration of previously understudied aspects, such as the developmental trajectory of fears and insecurities.

Limitations include potential selection bias, with overrepresentation of women and more complex CHD, limiting generalizability. In the general CHD population, approximately 50% have moderate-to-severe disease [14] and CHD is overall equally prevalent in both sexes [33], whereas our cohort consisted of approximately 90% patients with moderate-to-severe disease and was two-thirds female. The questionnaire was not formally validated, and reliance on self-reported data and item non-response may have introduced bias. Self-reported CHD diagnosis and treatment may have led to misclassification, partly explaining discrepancies between disease complexity and intervention rates. Furthermore, disease classification was based on anatomical complexity, which may not fully capture experienced disease burden, as functional capacity and illness perception may be more relevant [11, 12]. Finally, the cross-sectional design and descriptive analyses preclude conclusions about causality or temporal relationships.

Despite these limitations, the study provides meaningful exploratory insights that support further hypothesis-driven research.

Conclusion

Psychosocial challenges in CHD are common across life stages and disease complexity, following a developmental trajectory from physical concerns in childhood to social insecurities in adolescence and reproduction- and employment-related concerns in young adulthood, while coexisting with substantial coping and resilience. These concerns are particularly evident in women, younger adults, and individuals with complex disease. These findings support integrating structured psychosocial assessment into CHD care across the lifespan, particularly during transition, and highlight the need for improved communication and strategies to support individualized care and identify patients at higher risk.

Abbreviations

ACHD

Adults with Congenital Heart Disease

CHD

Congenital Heart Disease

PAH

Patiëntenvereniging Aangeboren Hartafwijkingen (Dutch Patient Association for Congenital Heart Disease)

Authors' contributions

FM analyzed and interpreted the patient data and played a major role in writing the manuscript. PK and HE made significant contributions to the study’s design and conception and provided revisions to the manuscript. VJ also contributed to the writing and revision of the manuscript. MD was responsible for collecting the questionnaire data. AR and LW made key contributions to the study’s conception. All authors reviewed and approved the final manuscript.

Funding

No external funding was received for this study.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study was conducted in accordance with the Declaration of Helsinki (1975). The study did not fall under the scope of the Dutch Medical Research Involving Human Subjects Act (WMO) and was therefore not subject to review by the Medical Ethics Review Committee of Leiden University Medical Center. The study protocol was reviewed and approved by the Non-WMO Review Committee of Leiden University Medical Center (approval number: 2025-021 URO).

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.