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Learn more: PMC Disclaimer | PMC Copyright Notice BMC Health Serv Res . 2026 Mar 5;26:509. doi: 10.1186/s12913-026-14286-8 Search in PMC Search in PubMed View in NLM Catalog Add to search Bridging communication gaps to improve adult congenital heart disease care: patient perspectives from a qualitative study Sasha Ruban Sasha Ruban 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia Find articles by Sasha Ruban 1, 2, 3 , Larissa Lloyd Larissa Lloyd 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia Find articles by Larissa Lloyd 1, 2, 3 , Tanya Badal Tanya Badal 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia Find articles by Tanya Badal 1, 2, 3 , Geoff Strange Geoff Strange 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia Find articles by Geoff Strange 1, 2, 3 , David S Celermajer David S Celermajer 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia Find articles by David S Celermajer 1, 2, 3 , Carissa Bonner Carissa Bonner 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia 4 Leeder Centre for Health Policy, Economics & Data, School of Public Health, The University of Sydney, Sydney, NSW Australia 5 Sydney Health Literacy Lab, School of Public Health, The University of Sydney, Sydney, NSW Australia 6 School of Public Health, The University of Sydney, Edward Ford Building (A27), Sydney, NSW 2006 Australia Find articles by Carissa Bonner 3, 4, 5, 6, ✉ Author information Article notes Copyright and License information 1 Clinical Research Group, Heart Research Institute, Sydney, NSW Australia 2 Cardiology Department, Royal Prince Alfred Hospital, Sydney, NSW 2050 Australia 3 Faculty of Medicine and Health, The University of Sydney, Sydney, NSW Australia 4 Leeder Centre for Health Policy, Economics & Data, School of Public Health, The University of Sydney, Sydney, NSW Australia 5 Sydney Health Literacy Lab, School of Public Health, The University of Sydney, Sydney, NSW Australia 6 School of Public Health, The University of Sydney, Edward Ford Building (A27), Sydney, NSW 2006 Australia ✉ Corresponding author. Received 2025 Dec 1; Accepted 2026 Feb 26; Collection date 2026. © The Author(s) 2026 Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ . PMC Copyright notice PMCID: PMC13072496 PMID: 41787485 Abstract Background Adults with Congenital Heart Disease (CHD) require lifelong specialist care, yet many report communication challenges that undermine health understanding, managing their condition and their overall wellbeing. Effective specialist-patient communication is associated with better outcomes, but little research has explored adult CHD (ACHD) patients’ perspectives on these interactions. Methods This qualitative study was conducted as part of a larger investigation of ACHD care in Australia. Using purposive sampling, 43 adults aged 20–54 years with mild, moderate, or severe CHD were recruited from four hospitals. Semi-structured interviews were conducted via video conferencing, transcribed, and analysed using Framework Analysis. Rigour was maintained through double coding, iterative refinement of the thematic framework, and multidisciplinary team review. Results Four themes shaped patient experiences of communication: (1) fragmented communication between providers ; (2) inadequate patient-facing communication ; (3) gaps in understanding of condition ; and (4) emotional impacts of suboptimal communication . Conversely, clear, respectful, and empathic communication fostered trust, confidence, and adherence. Participants recommended structured handovers, accessible records, plain-language explanations, visual and written aids, and routine psychosocial support. Conclusions This study demonstrates that communication in ACHD care is not merely an aide to clinical management but a defining element of quality, continuity, and patient wellbeing. Participants’ experiences revealed that fragmented inter-specialist communication and limited patient-facing explanations contribute to confusion, care discontinuity, and emotional distress. These findings highlight that improving communication practices is essential to strengthening patient autonomy, mitigating psychosocial burden, and sustaining engagement in lifelong specialist care. Practice implications ACHD services should establish structured handover pathways, shared records, and designated care coordinators to minimise fragmentation. Specialists could engage patients more directly with age-appropriate, plain-language discussions, progressive transfer of responsibility during adolescence, and revisiting knowledge in adulthood. Incorporating visual aids, written summaries, and psychosocial screening into routine practice, alongside training specialists in empathic, patient-centred communication, could strengthen trust, improve adherence, and enhance long-term outcomes. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-026-14286-8. Keywords: Adult Congenital Heart Disease (ACHD), Health communication, Transition of care, Patient-centred care, Continuity of care, Psychosocial wellbeing, Patient education Introduction Congenital heart disease (CHD) encompasses structural abnormalities of the heart or great vessels present from birth, affecting approximately 9 per 1,000 live births globally [ 1 ] and an estimated 2,400 infants annually in Australia [ 2 ]. Advances in medical and surgical care have significantly improved survival rates [ 3 ], resulting in a growing population of adults living with CHD [ 4 , 5 ]. CHD patients require life-long cardiology care [ 6 ] with guidelines recommending specialised care from Adult Congenital Heart Disease (ACHD) specialists for approximately half of this population [ 7 ]. Ongoing ACHD specialist care results in better outcomes and lower mortality [ 8 ]. As survival improves for this cohort, there is an increasing need for health services to support long-term management and quality of life [ 9 ]. For many individuals with CHD, continuity of care is challenged during the transition from paediatric to adult health services. Transition is a purposeful, planned process that addresses the medical, psychosocial and educational needs of adolescents and young adults as they move from child-centred to adult-oriented healthcare systems [ 10 ]. Despite its importance, this period is associated with increased risk of disengagement from care, loss to follow-up and poorer health outcomes [ 11 , 12 ]. Communication gaps between paediatric and adult services, inconsistent information provision, limited preparation for self-management and unclear role delineation between providers have been identified as key barriers to effective transition [ 13 , 14 ]. A critical component of this care is effective communication and continuity of care [ 15 ]. The quality of communication between patients and their healthcare providers is fundamental to enhanced health outcomes, quality of life and ongoing patient wellbeing [ 16 , 17 ]. The communication approach of ACHD specialists plays a pivotal role in providing patient centred care, support and education [ 18 ]. The communication between the patient and their ACHD specialist shapes the patient experience, either fostering trust and empowerment or contributing to frustration, confusion and disengagement [ 19 ]. Despite the evidence, research shows that many CHD patients report persistent communication challenges that impact their experience of care, patient understanding and emotional wellbeing, and their ability to manage their condition [ 20 , 21 ]. These challenges may lead to unmet emotional needs and impacted quality of life [ 22 , 23 ]. Without clear and comprehensive information, patients may struggle to make informed decisions, leading to feelings of uncertainty and anxiety [ 24 ]. For example, Giusti et al. found that feeling disempowered in decision making led to decreased satisfaction with care, and patients reported feeling overlooked or undervalued by their healthcare provider [ 25 ]. While specialised ACHD care is associated with improved outcomes [ 26 ], little is known about the interpersonal dynamics shaping the patient-specialist relationship, particularly in Australia. This study explores the communication experiences of CHD patients during interactions with their ACHD specialists, to inform health service improvements in ACHD specialised care. Methods Ethics approval Ethical approval for this study was granted by the Human Research Ethics Committee of the Sydney Local Health District (X20-0483). Sydney Local Health District located at Royal Prince Alfred Hospital is accredited and certified by the NHMRC and the NSW Ministry of Health to approve studies under the mutual acceptance scheme and provide ethical clearance for multi-centre studies. All research conforms to the 2025 and the Australian Code for the Responsible Conduct of Research 2018. The study will be conducted in accordance with the National Statement on Ethical Conduct in Human Research (2007), the CPMP/ICH Note for Guidance on Good Clinical Practice and consistent with the principles that have their origin in the Declaration of Helsinki. Compliance with these standards provides assurance that the rights, safety and well-being of trial participants are respected. Participants provided verbal and electronic written informed consent prior to their interviews. Due to the potential for participant identification, interview transcripts are not publicly available. Recruitment and data collection We enrolled over 1600 participants from four Australian hospitals as part of a larger research study in which patient and their carers were invited to participate in an in-person study visit for physical assessment and for a series of surveys questioning physical and mental health, neurodevelopment and quality of life [ 27 , 28 ]. Participants were recruited at each site by study coordinators through invitation letters. Purposive sampling was used to select 43 participants to ensure variation in gender and CHD complexity (mild, moderate, severe) [ 29 , 30 ]. This sample was sufficient to develop themes that explained variation in experiences [ 31 ]. Interviews were conducted via Microsoft Teams, with recordings transcribed by the research team ( n = 21) and an external transcription service ( n = 22). A semi-structured interview guide (Appendix A ) was developed iteratively, informed by the CHD transition process and ACHD care guidelines and refined with input from ACHD specialists, a neuropsychologist, and specialist CHD nurses, allowing both consistency and flexibility in exploring care experiences, communication, and transition. Overarching themes were developed across the interview transcripts rather than responses to specific questions. This paper focuses on communication themes. Additional themes on psychosocial needs and transition are reported elsewhere [ 32 , 33 ]. Participants Participants were stratified by CHD complexity (mild, moderate, and severe) [ 30 , 34 ]. Detailed participant characteristics were collected through researcher developed questionnaires completed on REDCap as part of the larger study this data can be seen in Results (Table 1 ). Theoretical saturation was achieved for the aims of the study, so no further interviews were completed, 43 is a large inclusive sample for a qualitative study, the sample size was sufficient to achieve theoretical saturation, in that we were able to explain variation in transition experiences and identify gaps in communication using the themes derived from the data [ 35 ]. The median interview duration was 36 min. Participants were invited to review their interview transcripts; no revisions were requested. Table 1. Detailed participant characteristics Characteristic n % Gender Male 20 47 Female 23 53 CHD Complexity Mild 6 14 Moderate 23 53 Severe 14 33 Location City 30 70 Rural 13 30 Ethnicity Australia/New Zealand 30 70 United Kingdom 4 9 Europe 2 5 Middle East 2 5 Other 6 14 Marital status Single/Never married 16 37 Defacto 11 26 Married 16 37 Children/Dependents Yes 18 42 No 25 58 Highest grade of school completed Primary 1 2 Secondary Certificate 3 7 Higher Certificate 38 88 Unknown 1 2 Birth country Australia 40 93 England 1 2 New Zealand 1 2 UAE 1 2 Current employment Full time work 22 51 Part time work (20–35 h per week) 6 14 Part time work (less than 20 h per week) 4 9 Casual work/Volunteering 9 21 Homemaker 2 5 Mental health comorbidities Attention disorder 2 5 Depression 11 26 Anxiety 15 35 Post traumatic stress disorder 3 7 Not applicable 24 56 Current care status Specialist ACHD care 43 100 Age at transition 0–16 11 26 16–20 28 65 21+ 2 5 Unknown 2 5 Open in a new tab Analysis Data were analysed using Framework Analysis [ 35 ] to identify data-driven themes. Four researchers (SR, LL, TB, CB) independently reviewed transcripts to develop an initial coding framework from five transcripts, which was refined after analysing eight additional transcripts. All transcripts were coded in NVivo (LL, SR). To ensure consistency, ten of the 43 transcripts were independently double-coded, and discrepancies were resolved through discussion until consensus was achieved. The final framework was reviewed and validated by the full author team. Themes and illustrative quotations were summarised and mapped to identify overarching patterns within and across cases. Analytical rigour was ensured through independent coding, iterative comparison with new data, negative case finding and multidisciplinary team review. The research team represented expertise in cardiology, psychology, public health, health literacy, neuropsychology, cardiac nursing, and qualitative research. Interviewers (DK, SR) had prior research contact with participants but no clinical involvement. All authors declare no conflicts of interest. Results The sample included 43 patients with an age range from 20 to 54 years. All 43 participants were under ACHD specialist care, and most had transitioned between 16 and 20 years of age. See detailed participant characteristics in table below (Table 1 ). We identified four key health service gaps which influence the communication between CHD patients and their ACHD specialist and can impact overall wellbeing and health outcomes: 1) Fragmented communication between healthcare providers; 2) Inadequate patient-facing communication; 3) Gaps in understanding condition; 4) Emotional impact of suboptimal communication (Table 2 ). Table 2. Key health service gaps which influence patient-specialist communication Health Service Gap Example Quotes Fragmented communication between healthcare providers “A succinct plan in case of emergency…It needs to be easily accessible….and with detailed history…some sort of universal notes.” (ID: 1367 − 0149 , male , complex , city) “There was no handover process when one doctor retired , and all patients had to find someone new.” (ID: 1367 − 0842 , female , moderate , rural) Inadequate patient-facing communication “A lot of the conversations happen between the parent and the doctor , and not a whole lot of explanation happens to the actual patient. Sometimes the service providers expect you to come with a guardian , even as a young adult.” (ID: 1367 − 0799 , male , moderate , rural) “He would talk to my dad in the appointments. I don’t remember anything being explained to me.” (ID: 1367 − 408 , female , moderate , city) Gaps in understanding condition “I couldn’t tell my GP (General Practitioner) what my heart condition was.” (1367 − 0980 , female , severe , rural) “it’s good to reiterate that my understanding is correct…somebody will discuss it …then you do something incorrectly… I’m open to discussing it , to make sure that I remember what’s going on.” (ID: 1367 − 1219 , male , moderate , city) Emotional impact of suboptimal communication “There has definitely been times where it has been pretty depressing for me.” (ID: 1367 − 0410 , female , moderate , city) “You’re treated like a diagnosis , not a person.” (ID:1367 − 0599 , female , severe , city) Open in a new tab Fragmented communication between healthcare providers Participants described disjointed communication between healthcare providers across different settings and stages of care, which led to delays, duplication, and confusion in their management. These communication gaps were particularly evident during care transitions, emergencies, and when patients encountered new healthcare providers unfamiliar with their history. Several participants reported that critical clinical information was not being shared effectively between general practitioners, hospitals, and specialists where the absence of an accessible medical record left them responsible for bridging the information gap: Lack of communication: “There was no communication between what my GPs were sending through and any other information being sent to the hospital.” (ID:1367 − 0240/female/simple/regional) Anxiety: “I kind of felt a bit rushed out the door…I’m a really anxious person; I would have liked my Dr to run me through a few things first.” (ID:1367 − 122//male/moderate/city) Transition points, such as moving from paediatric to adult care, or the retirement of a healthcare provider were frequently cited as breakdowns in continuity. In many cases, participants had to retrieve or manage their own medical records. These communication failures also affected the quality of ongoing care. Participants described a systemic lack of standard integrated communication protocols, which placed the burden of information management on patients and their families. The absence of formalised handover processes and accessible records contributed to gaps in communication and care. Connectivity: “That information flow between your paediatric cardiologist and your adult cardiologist might be seen , but for new providers , I had nothing.” (ID:1367 − 0799/male/moderate/regional) Handover: “There was no handover process when one doctor retired , and all patients had to find someone new…I did occasionally have to request the letter myself so that I could have a copy. It doesn’t seem like by default the patient receives a copy sometimes.” (ID:1367 − 0842/female/moderate/regional) Unfamiliar setting: “Now , if you’re seeing someone different and they’re not as familiar with where you’re at… you don’t get the same results…No one followed up with me. I think I wasn’t on someone’s books during transition.” (ID:1367 − 0640/male/simple/city) Alternatively, some participants described smooth, well-co-ordinated communication between the healthcare team, which fostered confidence in their care. They valued knowing that ‘everyone’ was on the same page and actively shared information. These experiences highlighted how proactive communication could reassure patients and support continuity of care, particularly for those with positive relationships with their ACHD specialists. Lack of communication: “There was no communication between what my GP’s were sending through any other information that was being sent through to the hospital , so that was pretty abysmal.” (ID:1367 − 0240/female/simple/regional) Consistency: “I had always like a 3-doctor touch point where they worked closely… That consistency was a big support to me and my parents.” (ID:378/male/complex/city) Inadequate patient-facing communication Participants described a lack of direct communication from specialists to them as patients, particularly during childhood and adolescence. Instead, conversations were often directed toward parents or caregivers, leaving participants with limited understanding of their own condition and feeling unprepared to manage their healthcare independently as adults. This communication pattern often began early and persisted into adolescence. Even as they aged, participants reported that the clinical focus remained with their parents. This indirect communication left many patients unaware of fundamental information about their condition and health history. Indirect communication: “He would talk to my dad in the appointments. I don’t remember anything being explained to me.” (ID:408/female/moderate/city) “I still felt like it was more directed at my parents.” (ID:1367 − 0980/female/complex/regional) The transition to adult care made these communication gaps especially visible. Participants recalled being asked questions by their ACHD specialist that they were unable to answer. Lack of understanding: “When you’re asked to explain your own condition , you realise you were never taught it properly.” (ID:1367 − 0593/female/complex/regional) Participants also reflected on the quality and tone of ACHD specialist communication. Rather than collaborative discussions, they often received one-way instructions that lacked context or sensitivity. In contrast, participants valued specialists who explained information in an accessible way, encouraged questions and treated them with respect. Lack of sensitivity: “My cardiologist was blunt — just said what to do without much understanding or a plan.” (ID: 1367 − 0559/female/complex/city) Keeping in touch: “My adult cardiologist gave me his email and said , ‘Contact me any time’… I liked that respect and the feeling he was taking care of me.” (ID:1367 − 1362/male/complex/city) Gaps in understanding condition Participants frequently reported limited understanding of their CHD, including the nature of their condition, relevant terminology, and the implications for daily life, decision-making, and health system navigation. This lack of health literacy was often rooted in early experiences where information was not adequately explained or directed toward them during childhood. Several participants described how their understanding of their condition remained superficial well into adulthood: Lack of understanding: “I still don’t have a great understanding of my condition. I say I have half a heart — that’s the only way I know how to explain it.” (ID:1367 − 0593/female/complex/regional) Some highlighted their reliance on parents to communicate their condition on their behalf: Knowledge gaps: “I’ve got a knowledge gap in my own medical history because it was always done between the parents and the doctor.” (ID:1367 − 0640/male/simple/city) There was a common recognition that the lack of early patient-directed education contributed to ongoing challenges in self-management. This gap in knowledge also extended to interactions with healthcare providers. Lack of awareness: “Maybe if someone made me more aware of that in my adolescence I could have been better equipped to manage that as an adult.” − 1367 − 0980 (female/complex/regional) Lack of understanding: “They’re just big words to me. I don’t know what they mean.” (ID:1367 − 0593/female/complex/regional) Participants noted that revisiting their medical history with their ACHD specialists in adulthood helped them gain insight. Participants reported that lifestyle and self-care guidance was often delayed or absent. It was evident that there was a knowledge gap among individuals with CHD that stems from childhood communication practices and continues into adulthood. Lack of guidance: “I was never given guidance about lifestyle or nutrition until much later in adulthood.” (ID:408/female/moderate/city) In contrast, participants described instances where ACHD specialist used clear expectations, visual aids positive framing to help them understand their condition without instilling fear. These examples show how clear explanations — especially when personalised and accompanied by empathy, can build patient confidence and improve recall of clinical information. Reassurance: “The diagram made me and my dad a lot less scared… it was transparent , and I felt reassured.” (ID:56/female/simple/city) “I was made aware of all my problems and limitations , but I wasn’t afraid of it.” (ID:1367 − 149 /male/complex/city) Emotional impact of suboptimal communication Participants described a range of emotional consequences linked to poor communication across their CHD care journey. Feelings of anxiety, distress, confusion, and isolation were frequently reported, particularly when they felt unheard, inadequately informed, or reduced to a diagnosis. Several participants shared moments of acute emotional distress, which they tied directly to feeling ignored or dismissed during critical health events. Others reported coping mechanisms, including mentally disengaging during appointments or avoiding care altogether. Emotional: “I had a massive breakdown — nothing was being done , I didn’t feel listened to.” (ID:1367 − 149/male/complex/city)“I used to block it out until I had to go. I wouldn’t remember anything from appointments.” (ID:408/female/moderate/city) The transition to adulthood was described as difficult, as the burden of managing a complex condition shifted abruptly onto the patient. Anxiety: “I got terrible anxiety in my early 20s. It felt like everything was dumped on me all of a sudden.” (ID:1367 − 0980/female/complex/regional) Many participants described long-standing emotional effects beginning in childhood. Some participants reported more chronic feelings of sadness and alienation, particularly when they felt stripped of identity beyond their diagnosis. These narratives highlighted the profound emotional impact of poor communication in CHD care. When patients were not adequately informed, included, or supported, it discouraged engagement with care and treatment, and participants described how this could lead to long-term psychological distress. Anxiety: “It was a really anxious time as a kid. I knew something was wrong with my heart and no one explained it.” (ID:1367 − 0842/female/moderate/regional) Depression: “There has definitely been times where it has been pretty depressing for me.” (ID:1367 − 149/male/complex/city) On the other hand, good rapport and trust with specialists were described as key to feeling safe, confident, and engaged in care. Participants linked these relationships directly to their willingness to share information and follow medical advice. Such positive interactions reinforced patients’ trust in their care, fostered open communication, and contributed to a greater sense of wellbeing. Rapport: “The better the rapport with your doctor , the better the outcomes… If you’ve got a good relationship , you’re more likely to be open and honest.” (ID:1367 − 0799 /male/moderate/regional) Positive relationship: “The cardiologist I saw at the time was so good… I had a really good relationship and rapport , and that made all the difference.” (ID:1367 − 0640/male/simple/city) Guidance: “He never told me I couldn’t do the marathon , instead , he gave me knowledge to do it safely. That advice still shapes how I manage my condition.” (ID:1367 − 0912/male/complex/regional) Participant recommendations to improve communication Throughout the interviews, participants often referred to strategies that could improve communication in ACHD care and their overall health outcomes. To reduce fragmentation and improve continuity, participants emphasised the need for clearer information exchange between providers, including direct specialist-to-specialist handover, shared care records accessible across services, and the routine provision of correspondence and results to patients. Some participants also highlighted the value of a designated care coordinator to streamline communication and reduce the burden of navigating care. To improve patient-facing communication and information recall, participants recommended the use of visual aids, plain-language explanations, and written summaries following appointments. Enhancing patient understanding was viewed as critical to supporting independence, with suggestions including advance question prompts, structured follow-up options (in person or via telehealth), direct patient engagement during consultations, and access to credible, patient-friendly educational resources. Participants also stressed the importance of addressing the emotional dimensions of care. Strategies to reduce anxiety and build trust included maintaining continuity in the patient-specialist relationship, adopting patient-centred communication styles, using positive and strengths-based framing when discussing risk, and incorporating routine psychosocial wellbeing check-ins into clinical encounters. Table 3 outlines participant recommendations. Table 3. Patient recommendations on improving patient-specialist communication Gap Participant recommendations To minimise fragmentation and ensure continuity of care, providers should strengthen communication between healthcare team • Facilitate direct specialist to specialist handover • Ensure patients receive copies of all correspondence and results • Implement shared care records accessible across teams • Nominate a single care coordinator to streamline communication To improve patient facing communication, enhance understanding and recall of medical information • Use visual aids such as diagrams or drawings • Provide written summaries or takeaway sheets after appointments • Use plain language to explain complex concepts To improve patient understanding, there is a need to better understand their condition • Providing question prompts in advance of appointments to encourage active participation • Offer structured follow up options (in person or via telehealth) • Engage patients directly in discussions to build independence • Provide credible patient friendly education resources To reduce the emotional impact of communication gaps, build trust, confidence and emotional safety in specialist interactions • Use positive framing when discussing risk (e.g., discussing what patients can do safely rather than only what they should avoid). • Maintain continuity in the patient-specialist relationship • Prioritise patient-centred communication styles • Incorporate psychosocial wellbeing check-ins into routine care Open in a new tab Discussion The findings of this study provide new insights into how communication between ACHD specialists and patients influences care quality, condition understanding and emotional wellbeing. Participants described a spectrum of experiences, from well-coordinated, respectful and empowering interactions to those marked by fragmented information exchange, indirect or inadequate patient facing communication, limited understanding of their own condition and significant emotional impacts. With CHD survival rates increasing [ 33 ], the quality of ongoing care including communication between patients and ACHD specialists has become a central determinant of health outcomes, self-management and psychosocial wellbeing [ 5 ]. Handover between paediatric and adult CHD specialists remains variable and the absence of standardised transfer procedures contributes to care discontinuity and loss to follow up [ 36 ]. Participants in our study described needing to bridge gaps between specialists, often having to retrieve records or clarifying care without support. Such reliance on patient driven management is inefficient and risky, particularly in specialised ACHD care as timely and accurate information is critical [ 37 ]. In clinical practice, this underlines the importance of shared electronic health records, mandated transfer summaries, and direct specialist-to-specialist handovers, all of which have been recommended in consensus guidelines [ 29 ] -however these are inconsistently implemented. Incorporating a dedicated case manager or transition coordinator may further ensure accountability for continuity of care. Research has shown that young adults with CHD often have inadequate knowledge of their diagnosis and treatment history [ 38 ]. Our findings emphasise that as children or adolescents, information was often directed towards parents only, leaving patients ill-prepared for independent self-management. From a clinical perspective, this represents a missed developmental opportunity: adolescence is a time when patients should be progressively engaged in discussions about their condition, fostering autonomy and readiness for adult care [ 12 ]. This aligns with previous reports that young adults with CHD often have inadequate knowledge of their diagnosis and treatment history [ 39 ]. From a clinical perspective, this represents a missed developmental opportunity as adolescence is when patients should be progressively engaged in discussions about their condition, fostering autonomy and readiness for adult care. Best practice transition models, such as nurse-led education programs in Canada [ 40 ] and structured readiness assessments trialled in Europe [ 41 ], demonstrate that proactive education and direct engagement can improve knowledge and self-efficacy. Implementing similar structured programs within ACHD clinics combining visual aids, written summaries, and opportunities for guided questioning would directly address the gaps described by participants. Knowledge deficits in adulthood further compound the challenge. Several participants described only superficial awareness of their diagnosis, highlighting the persistence of gaps in understanding their condition. Poor understanding of their anatomy, procedures, and risk implications not only limits self-management [ 38 ] but also impedes effective interactions with non-specialist providers such as general practitioners and emergency specialists [ 42 ]. CHD is inherently complex, with anatomical and physiological features that are often difficult for specialists to interpret or explain [ 6 , 7 ]. Communicating this complexity presents challenges for both specialists and patients. Although online resources can support understanding, they may also generate anxiety when critical nuances are overlooked. Communication strategies must therefore acknowledge the intricate nature of CHD and aim to balance accuracy, clarity, and reassurance [ 43 ]. In practice, this indicates a need for routine “diagnosis reviews” within specialised ACHD care, where specialists revisit the patient’s history, explain terminology in plain language, and reinforce key messages about prognosis and lifestyle [ 44 ]. Digital patient portals and tailored educational resources may also provide ongoing reinforcement, but these should support not replace direct ongoing ACHD specialist dialogue [ 45 ]. Of particular concern were the emotional consequences of suboptimal communication. Participants described distress, anxiety, and avoidance of care when they felt dismissed or uninformed, echoing evidence that depression and anxiety are prevalent yet under-recognised in the ACHD population [ 46 , 47 ]. Adults with congenital heart disease often also experience cognitive fatigue, emotional invisibility during clinical encounters, and anxiety linked to disease uncertainty; issues that can contribute to social withdrawal and strained relationships [ 27 , 48 ]. Conversely, those who experienced empathic, respectful communication linked it directly to trust, adherence, and wellbeing. These findings reinforce the principle that communication is not simply a clinical skill but a therapeutic intervention [ 49 ]. In practice, embedding routine psychosocial screening and integrating mental health professionals such as psychologists, social workers, or mental health nurses, into ACHD multidisciplinary teams would ensure that emotional needs which arise are systematically identified and addressed [ 50 ]. Importantly, screening must be accompanied by clear referral pathways, with identified team members responsible for follow-up, support, and coordination of care when screening indicates psychological distress. Training ACHD specialists in empathic communication and shared decision-making frameworks is also essential to ensure that emotional concerns are acknowledged, appropriately escalated, and managed within the broader care team. Clinical implications The implications for clinical practice are clear. At an ACHD service level, structured handover pathways, shared information systems, and designated care coordinators are essential to reduce fragmentation and ensure continuity across paediatric and adult services. At the provider level, specialists should prioritise direct, age-appropriate, plain-language discussions that progressively transfer responsibility during adolescence and revisit key knowledge throughout adulthood. Incorporating visual aids, written visit summaries, and allowing time for patient questions are practical strategies to enhance understanding and autonomy. Embedding psychosocial screening and support within routine care, alongside communication training for ACHD specialists, can minimise emotional distress, foster trust, and strengthen therapeutic relationships. Importantly, these approaches must account for real-world constraints. The limited number of ACHD specialists in Australia relative to the growing patient population [ 51 ] means that time-intensive interventions are often impractical. To address this, strategies such as structured patient education resources, shared-care models with general cardiologists, and the use of digital communication tools should be prioritised to optimise efficiency and sustain care quality within existing capacity. Our findings reaffirm that communication between adults with CHD and their ACHD specialists is a critical determinant of both clinical outcomes and psychosocial wellbeing. Addressing the identified gaps requires practical, scalable interventions including: (1) development of personal health summaries, (2) better-managed care transitions, (3) patient-centred education and psychosocial support, and (4) provision of reliable, accessible resources (Fig. 1 ). Implementing these strategies could strengthen trust, improve adherence, and enhance long-term outcomes for adults living with CHD. Fig. 1. Open in a new tab Strategies to improve patient-specialist communication Future research Future research should explore interventions that directly address the communication challenges identified in this study. There is a need to evaluate transition programs, including the use of care coordinators and the use of digital health tools. Patient-facing education platforms are needed to determine their impact on health literacy, autonomy, and long-term outcomes in ACHD populations. Comparative studies across different healthcare systems such as public and private would help identify best practices for minimising fragmentation and ensuring continuity of care. In addition, qualitative research focusing on the perspectives of underrepresented groups such as culturally and linguistically diverse populations or individuals with lower health literacy could provide further insight into barriers to effective communication. Finally, integrating patient-reported outcomes into ACHD research will be critical for evaluating whether improvements in communication translate into enhanced quality of life, reduced psychological burden, and better engagement with ongoing ACHD care. Study limitations Whilst this study to the best of our knowledge is the first study to explore communication gaps in Australian ACHD care, some limitations should be noted. The sample was restricted to patients recruited from four hospitals in Australia, which may limit transferability to other healthcare settings. Self-selection bias may have occurred, as participants who agreed to be interviewed may have had particularly positive or negative views about their care. In addition, accounts relied on participant recall and subjective interpretation of past interactions, which may introduce bias. Finally, the perspectives of specialists or carers were not captured in this study. Conclusion This study highlights communication as a central determinant of care quality and wellbeing for adults with CHD. Participants identified four health service gaps: fragmented communication between healthcare providers, inadequate patient-facing communication, limited understanding of their condition, and the emotional consequences of these shortcomings. These gaps were particularly evident during transition between paediatric and adult care but persisted throughout ongoing ACHD management. Poor communication placed an ongoing burden on patients to coordinate information and navigate care, while indirect communication practices earlier in life left many ill-prepared for independent engagement in adulthood. In contrast, clear, inclusive, and empathic communication from ACHD specialists fostered trust, understanding, and sustained engagement with care. Embedding these approaches into routine practice requires structured communication frameworks, supported by workforce development and integrated care pathways. Addressing these communication gaps is critical to improving long-term outcomes, ensuring that ACHD care promotes not only survival but also sustained condition understanding, confidence and quality of life for adults living with congenital heart disease. Supplementary Information Below is the link to the electronic supplementary material. Supplementary Material 1 (17.4KB, docx) Acknowledgements We are grateful to Dr Denyse Kersel for her guidance in designing the study and conducting the preliminary interviews, and for contributing her specialist knowledge in neuropsychology. We sincerely thank the participants who generously gave their time and openly shared their stories, making this research possible. Abbreviations ACHD Adult Congenital Heart Disease CHD Congenital Heart Disease GP General Practitioner Author contributions Four researchers (SR, LL, TB, CB) independently reviewed transcripts to develop an initial coding framework from five transcripts, which was refined after analysing eight additional transcripts. All transcripts were coded in NVivo (LL, SR). The final framework was reviewed and validated by the full author team. Themes and illustrative quotations were summarised and mapped to identify overarching patterns within and across cases. Analytical rigour was ensured through independent coding, iterative comparison with new data, negative case finding and multidisciplinary team review. The research team represented expertise in cardiology, psychology, public health, health literacy, neuropsychology, cardiac nursing, and qualitative research. Interviewers (DK, SR) had prior research contact with participants but no clinical involvement. All authors declare no conflicts of interest. SR wrote the main manuscript text and prepared figures and tables. All authors reviewed the manuscript. Funding Funding has been provided by New South Wales Health through the NSW Health Cardiovascular Research Capacity Program and Senior and Early-Mid Career Researcher Grant. Data availability Data are not available due to the potentially identifiable nature of the full qualitative transcripts, as per ethics approval. Declarations Ethics approval and consent to participate Ethical approval for this study was granted by the Human Research Ethics Committee of the Sydney Local Health District (X20-0483). Sydney Local Health District located at Royal Prince Alfred Hospital is accredited and certified by the NHMRC and the NSW Ministry of Health to approve studies under the mutual acceptance scheme and provide ethical clearance for multi-centre studies. All research conforms to the 2025 and the Australian Code for the Responsible Conduct of Research 2018. The study was conducted in accordance with the National Statement on Ethical Conduct in Human Research (2007), the CPMP/ICH Note for Guidance on Good Clinical Practice and consistent with the principles that have their origin in the Declaration of Helsinki. Compliance with these standards provides assurance that the rights, safety and well-being of trial participants are respected. Participants provided verbal and electronic written informed consent prior to their interviews. Consent for publication Not applicable. Competing interests The authors declare no competing interests. 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Supplementary Materials Supplementary Material 1 (17.4KB, docx) Data Availability Statement Data are not available due to the potentially identifiable nature of the full qualitative transcripts, as per ethics approval. 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