Patient- and Clinician-Solutions to Improve Specialized ACHD Care: A Theory-Based Approach

Patient- and Clinician-Solutions to Improve Specialized ACHD Care: A Theory-Based Approach | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search Patient- and Clinician-Solutions to Improve Specialized ACHD Care: A Theory-Based Approach Anushree Agarwal , Katelyn Macholl , Alice Qian , Juhi Mehta , Pranav Ahuja , Karina Buenrostro , Kevin Sun , Daniel Dohan , Michelle Gurvitz , Megumi J. Okumura doi: https://doi.org/10.1101/2025.04.01.25325065 Anushree Agarwal 1 Division of Cardiology, Department of Medicine, University of California , San Francisco, CA MD MAS Find this author on Google Scholar Find this author on PubMed Search for this author on this site For correspondence: anu.agarwal2{at}ucsf.edu Katelyn Macholl 2 UCSF School of Medicine, University of California , San Francisco, CA MS Find this author on Google Scholar Find this author on PubMed Search for this author on this site Alice Qian 3 Case Western Reserve University School of Medicine , Cleveland, OH BS Find this author on Google Scholar Find this author on PubMed Search for this author on this site Juhi Mehta 1 Division of Cardiology, Department of Medicine, University of California , San Francisco, CA BS Find this author on Google Scholar Find this author on PubMed Search for this author on this site Pranav Ahuja 1 Division of Cardiology, Department of Medicine, University of California , San Francisco, CA BS Find this author on Google Scholar Find this author on PubMed Search for this author on this site Karina Buenrostro 1 Division of Cardiology, Department of Medicine, University of California , San Francisco, CA BA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Kevin Sun 1 Division of Cardiology, Department of Medicine, University of California , San Francisco, CA BFA Find this author on Google Scholar Find this author on PubMed Search for this author on this site Daniel Dohan 4 PRL Institute for Health Policy Studies PhD Find this author on Google Scholar Find this author on PubMed Search for this author on this site Michelle Gurvitz 5 Department of Cardiology, Boston Adult Congenital Heart Service, Boston Children’s Hospital, Brigham and Women’s Hospital, Harvard Medical School , Boston, MA MD Find this author on Google Scholar Find this author on PubMed Search for this author on this site Megumi J. Okumura 4 PRL Institute for Health Policy Studies 6 Division of General Pediatrics, General Internal Medicine, University of California , San Francisco, CA MD MAS Find this author on Google Scholar Find this author on PubMed Search for this author on this site Abstract Full Text Info/History Metrics Data/Code Preview PDF Abstract Background Adult congenital heart disease (ACHD) patients continue to face gaps in guideline-recommended care with ACHD specialists. We lack patient and clinician inputs to develop and implement behavior-change interventions to enhance guideline uptake. Objective This study aimed to describe stakeholder solutions to improve ACHD specialized care and conceptualize solutions utilizing behavior change frameworks. Methods This qualitative study uses the COM-B (Capability, Opportunity, Motivation, and Behavior) model and TDF (Theoretical Domains Framework) to understand patient behaviors and potential solutions to improve ACHD care. We focused on ‘patient engagement’ as the target behavior to improve specialized care. We conducted 45 to 60-minute semi-structured interviews with ACHD patients and clinicians (cardiologists and clinic staff). We used purposeful sampling to interview diverse patients based on care gaps, disease status, race/ethnicity, and geography. At least two independent coders conducted inductive and deductive coding, and we performed rapid qualitative analysis. Results We interviewed 54 participants (37 patients and 17 clinicians). The patient median age was 32 years, 57% were women, 62% were people of color, 27% had less than a college education, 35% had ≥ 3 years of gaps in care, and 30% required ≥ 3 reminders to interview. We developed six interdependent categories of codes representing 36 sub-categories of determinants for patients’ engagement: healthcare system and institutional structure, knowledge and education, sources of support, personal development, identity and personal resources, and ACHD’s placement in one’s life. We identified two novel subcategories, care delivery with non-English speaking parents and “withdrawal of or lower” caregiver support, that were surprising enablers (not only barriers) to ACHD self-care. We developed a COM-B and TDF-guided framework to help understand how future interventions in the various patient engagement categories could support behaviors to improve ACHD specialized care. Conclusion Our novel stakeholder-derived, theory-driven ACHD patient engagement framework facilitates the development and evaluation of future interventions to improve ACHD specialized care. Interventions could target healthcare systems and institutional structures, provider and patient knowledge and education, and sources of patient support. Given the interdependence of the intervention categories, any single intervention program could support behaviors in more than one category. Introduction Over the last few decades, improvements in pediatric-based congenital heart care and survivorship have led to a rapid rise in the number of adults with congenital heart disease (CHD). It is estimated that over 2 million adult congenital heart disease (ACHD) patients currently live in the United States, with the prevalence of ACHD increasing by 40-50,000 every year. 1 Research has demonstrated that up to 85% of ACHD patients experience barriers in meeting ACHD care guidelines, 2 – 4 particularly in establishing and maintaining recommended care with ACHD specialists. 2 , 5 – 7 Lack of recommended care leads to higher mortality, morbidity, and poor quality of life, and a larger strain on the already resource-constrained healthcare system. 8 – 10 In an effort to better understand factors influencing ACHD specialized care, numerous studies have identified barriers and facilitators to patients engaging with their healthcare. 2 – 4 Other literature has proposed solutions to address barriers, and yet patients continue to struggle with navigating the healthcare system and adhering to guidelines. 11 – 14 One missing piece in the existing literature is the lack of a deep and nuanced understanding of the behavior, thoughts, and experiences of ACHD patients and clinicians, information that could provide insights on potential targets for improving ACHD care. Recently, implementation science approaches have emerged to enhance the uptake of evidence-based practices more quickly, completely, and equitably. 15 – 16 Two behavioral models popular for their comprehensive approach include Capability, Opportunity, Motivation–behavior (COM-B), and Theoretical Domains Framework (TDF). 17 – 19 COM-B separates sources of behavior into three constructs: capability – whether a patient has the knowledge, skills, and abilities to engage in a behavior; opportunity – external factors that make the execution of a behavior possible; and motivation – internal processes that influence decision-making around a behavior. 19 TDF elaborates on the COM-B model by creating fourteen sources of behavior, each of which can be tied back to one of the three COM-B constructs. 17 Mapping out sources of behavioral change frameworks, like COM-B and TDF, could allow leaders, policymakers, and scientists to understand why a specific behavior occurs and how to create targeted interventions for effective change. 17 – 19 While these approaches are evolving in cardiac conditions such as coronary artery disease and heart failure, 19 – 20 ACHD remains untapped. This study focuses on engaging ACHD patient and clinician stakeholders to understand the determinants of behaviors that enhances adherence to ACHD specialized care. We further map these determinants to develop a behavioral framework for the design and evaluation of future ACHD interventions. Methods Overview This study used a qualitative design to elicit patient and clinician insights to enhance the uptake of ACHD care guidelines. We used the COM-B and TDF frameworks to describe the findings pragmatically to inform future health care interventions. Our target behavior was patient activation and engagement, a concept defined in the chronic care model, as the key for patients to be active partners with healthcare systems to improve outcomes. 21 Participants We used purposive sampling to engage diverse patient and clinician perspectives. 22 Patients were included if they were adults (≥ 18 years), English or Spanish speaking, and could provide informed consent, and excluded if they had a developmental disability. The initial sample of patients was identified via retrospective chart review and recruited from a large academic medical center (University of California, San Francisco [UCSF]). CHD diagnosis (categorized as complex, moderate, or simple) was determined through this review of the medical records. Patients with isolated simple lesions, such as atrial septal defects or ventricular septal defects, were excluded because the guidelines regarding their frequent follow-up with ACHD specialists are less robust. 5 We purposefully sampled patients who lacked an established relationship with an ACHD cardiologist or who had not seen an ACHD cardiologist for at least three years during their adulthood. 2 , 5 After thematic saturation 23 was reached for UCSF patients, we recruited non-UCSF patients with convenience and snowball sampling to achieve geographic diversity. 23 CHD clinicians from all regions of the US known to the study team and contacts within the advocacy organization, Adult Congenital Heart Association (ACHA), were asked to identify and refer patients with CHD for interviews. CHD diagnosis for non-UCSF patients was determined during interview conversations by the patients themselves. Clinicians were identified and recruited based on their involvement with pediatric or adult CHD care at UCSF. Clinicians nationwide were identified through support from ACHA and snowball sampling to achieve geographically diverse perspectives. Interviews Separate patient and clinician interview guides were developed using the COM-B framework to explore themes related to barriers and facilitators to engaging with the adult healthcare system and solutions to enhance engagement. 19 Semi-structured interviews were conducted over Zoom, each lasting 45-60 minutes. At the end of the interview, participants were given a recap of major themes recorded to provide a member check. 24 Most interviews were conducted in English by a single interviewer (KM). Four interviews with Spanish-speaking participants were conducted by a second interviewer (KB). Interviews were recorded, professionally transcribed, and translated. Patients completed a demographic survey (age, gender identity, race/ethnicity, highest level of education, estimated household income) and answered a single close-ended question about the presence or absence of a prior three-year (or greater) gap without seeing a cardiologist. 5 Analysis Qualitative Analysis Five coders (AA, KM, JM, KB, KS) collectively reviewed the first two patient and clinician interviews via inductive coding to identify themes and subthemes. Following these four transcripts, we switched to individual, deductive coding using the developed list of themes and subthemes. Each transcript was coded individually by two separate coders (including AA, KM, JM, KB, KS, PA, AQ). The two versions of coded transcripts were then compared to resolve discrepancies between coders and generate one final coded transcript for each interview. All coded transcripts were organized on an Excel spreadsheet creating a matrix of themes and subthemes identified by each interview participant. The matrix was subsequently analyzed with rapid qualitative analysis, an action-oriented method for qualitative data analysis, to efficiently produce results for real-world interventions. 26 Using the matrix, cross-participant comparisons were made to summarize determinants of patient engagement and solutions for improving ACHD specialized care. Summarizing matrix findings occurred via iterative group meetings of five team members (AA, KM, KB, JM, PA). Development of the Stakeholder-driven Theory-based Framework for Improving ACHD Care Following the development of the matrix, summarized determinants of patient engagement and solutions for improving ACHD specialized care were mapped onto COM-B and TDF behavioral frameworks. 17 – 19 We first identified the three COM-B sources of behavior (capability, opportunity, or motivation) and mapped them to at least one of the determinants of patient engagement. We then conducted an in-depth analysis of the stakeholders’ perspectives to further elaborate the COM-B model using the TDF domains. This mapping to TDF domains enhanced analysis of the solutions to improve ACHD specialized care by providing a specific mechanism by which the proposed solution would influence patient engagement behavior change. Each solution was deemed actionable if it aligned with one of the 14 TDF domains. Therefore, TDF created a pathway by which the solution would enhance patient engagement in care if it were implemented. This research was approved by the UCSF Institutional Review Board (#22-36667). All participants provided informed consent for collecting and incorporating their data for analysis and publication. Results Respondent Demographics We interviewed 54 participants: 37 patients (27 from UCSF, 10 from outside UCSF) and 17 clinicians (9 from UCSF, 8 from outside UCSF) ( Table 1 ). About 30% of patient participants, specifically those who had ≥ 3 years gaps in care, required three or more outreach attempts (e.g., rescheduling, numerous reminders, ad hoc phone interviews) to complete the interview. View this table: View inline View popup Table 1: Participant Characteristics. Barriers and Enablers to ACHD Specialized Care Participants identified barriers and solutions to a patient’s ability to be engaged in establishing and maintaining ACHD care. We developed six major categories (from 36 sub-categories) as determinants of ACHD patients’ engagement in their healthcare ( Table 2 ): healthcare system and institutional structure, knowledge and education, personal development, sources of support, identity and personal resources, and ACHD’s placement in one’s life. Healthcare system and institutional structure describes broader structural factors, e.g., insurance and geographic location. Knowledge and education details how individuals learn about their condition and how to navigate ACHD, e.g., through a transition program. Personal development captures an individual’s likelihood to drive their care, e.g., by being self-motivated. Sources of support highlights the role of family or the larger ACHD community in creating connections around ACHD care. Identity and personal resources contain factors, e.g., financial status or language, that influences an individual’s ability to obtain and interact with healthcare. View this table: View inline View popup Table 2: Determinants for ACHD Specialized Care with Illustrative Ǫuotes. ACHD’s placement in one’s life signifies how time and thoughts of ACHD are balanced with other responsibilities. Interdependence of Categories While we developed six categories to outline the participant-identified barriers and enablers to engagement, the categories were not mutually exclusive. We captured the lived and multifaceted experience of participants at the crossroads of many different categories, i.e., participants with perceived barriers or facilitators in one category often noted barriers within multiple categories ( Figure 1 ). “having these symptoms and not getting answers is just giving me a lot more anxiety…It is affecting my income and employment, because it’s affecting my ability to work…the insurance is something that’s really preventing me from receiving the care, because I feel the doctors are being discriminatory because of my insurance…The ACHD provider availability, I was never told that I should be followed…Knowledge, I barely have. The only knowledge I have of my heart condition is really what I’ve read online.” - Female Patient in their 30’s Download figure Open in new tab Figure 1. Interdependence of Determinants for ACHD patient Engagement. Six determinants for ACHD patient engagement, along with example subthemes, are listed. Determinants are shown in overlapping circles to signify the interdependence of domains. In several instances, health system and structural factors (e.g., geographic location of the ACHD center) influenced knowledge and education (e.g., access to individuals who would impart education), which in turn impacted personal development (e.g., self-advocacy skills). In this instance, structural factors requiring broader systemic solutions influenced factors typically considered within a patient’s control, such as their attitude toward follow-up care. “I think the challenge is as the patients live further and further and further from the main campuses then, the available localized social network services become less and less available” – Pediatric Cardiologist However, participants also described how their identity and resources (e.g., socioeconomic status, comorbidities) influenced personal development (e.g., curiosity, self-motivation, getting older and wiser) and facilitated engagement with the health system (e.g., affordability, access to care), sometimes independently of other socio-cultural facilitators (e.g., educational programs, social workers). “So, identity – I’ve been lucky on all accords. So, I can imagine it might be different if I weren’t White. I can imagine it might be different if I didn’t speak English…my family understood the system and how to navigate insurance and things. If you’re not in that world, I can see where this would be incredibly difficult.” – Male Patient in their 40s Novel Understanding of Barriers and Enablers to ACHD Specialized Care A majority of the engagement determinants and proposed solutions overlapped with prior research exploring barriers and facilitators to ACHD care. Two unique findings surrounded language and caregiver involvement: both were raised previously as determinants of care but emerged with additional nuance in this study. Language Differences Could Facilitate Engagement Participants such as non-native English speakers, immigrants from abroad, or whose parents had limited English proficiency often described experiencing a language barrier between a clinician and their family. In the short term, these participants perceived language as a barrier due to a disconnect between their parents’ ability to communicate with clinicians and transmit knowledge back to the patient. However, in the long-term, it was the barrier of language at the level of parents that facilitated a patient’s early interaction with the health system and subsequently enabled them to be more familiar with navigating adult healthcare. “…because I grew up in an immigrant family and my parents don’t speak a lot of English, I had to have more understanding because I had [to] talk to the doctors who did not speak my language at home…Appointments, I started making early on. It used to be you had to call so then I did the calling even at a young age, like before 18.” – Female Patient in their 20s Caregiver Involvement Both Supported and Undermined Patient Engagement Dependable sources of support, including family, friends, and faith, enabled many patients to learn how to manage their care, including scheduling appointments and, more broadly, understanding their condition. Through familial support, patients built up the skills required to be independent in managing their care in adulthood. “I mean my parents are still around, and they still kind of support me, but it’s my decision. It’s my actions to continue that kind of care. And because of how they were since Day 1, I continue that and make sure I’m asking the right questions, going to the right people.” - Female Patient in their 30s. However, too much support prevented some patients from achieving independence. For example, some patients with heavily involved caregivers often felt that clinicians presented information only to their caregivers and they did not feel like equal members of their care team. Thus, they struggled during early adulthood when taking over care coordination responsibilities from their parents which often felt very abrupt and challenging. “I feel like the majority of the information was provided to caretakers, to the adult parents, and they didn’t necessarily always communicate that well to me. So, it would be nice to just have that information reinforced. And also, as a child, you don’t know what questions that you can ask of a healthcare professional, either. So, I didn’t really know which questions to ask, until I was older. And so, I didn’t really understand the full extent of my condition, or my limitations.” - Female Patient in their 40s While some patients noted sudden disruptions to support networks as barriers, others became more engaged with their ACHD management after they experienced removal of support (most notably due to a caregiver’s passing), as they were ‘forced’ to become independent drivers of their care. The previous level and type of support prior to its disruption were critical to what outcomes developed after the support was removed. “I started actually taking over my own care along with my brother in 2019 when our mother passed away…But it was really scary because my mom usually did everything. I never really touched my medical stuff. I was barely ordering my medications by myself.” - Female Patient in their 20s Proposed intervention targets to improve ACHD specialized care While Table 2 and Figure 1 demonstrates several participant-identified intervention targets to improve ACHD specialized care, three key intervention targets (among the six engagement categories) emerged as the most practical, readily actionable, and potentially high-impact solutions to address barriers present across all categories. These three intervention targets included: healthcare system and institutional structure, knowledge and education, and sources of support. However, patients and clinicians differed in both the priority and proposed implementation of each intervention target ( Figure 2 ). Download figure Open in new tab Figure 2: Clinician and Patient Perspectives for Future Targets of Intervention. To Improve ACHD Specialized Care Intervention targets listed based on which stakeholder prioritized which target, the intervention examples within each target, and the stakeholder quotes highlighting the intervention examples. Healthcare System and Institutional Structure Clinicians primarily recommended targeting interventions at the health system and structural levels. One example of this included the restructuring of ACHD services to an integrative chronic disease center, allowing for interprofessional collaboration (between cardiologists, social workers, and financial counselors, to name a few) and a ‘one-stop-shop’ model. Other examples included collaboration across specialties, such as with primary care physicians, developing CHD alerts in electronic medical records similar to preventative screenings, and restructuring the U.S. healthcare reimbursement model to offer financial incentives for patient education. Knowledge and Education Both patients and clinicians showed high concordance for the knowledge and education category with emphasis on the centralization of clear, regularly updated, and comprehensive, credible resources relevant to all domains in the patient experience (e.g., insurance, transportation). They particularly valued the accessibility of resources outside of the clinic visit. Clinic time constraints can limit opportunities for patient education, and additional resource opportunities can accommodate patient’s time and ability to engage with care outside of their healthcare visits. Additional patient-identified intervention targets included improved patient-physician communication in terms of transparency regarding the chronicity of their condition, the severity of CHD, individual schedules for surveillance, and logistical guidance on the day-to-day management of their CHD. Patients suggested resources detailing questions to ask their clinician, transition-specific appointments, and a point-of-contact throughout the transition for those leaving pediatrics and new to adult ACHD care. In addition, written instructions, exercise plans, and easily accessible research papers on ACHD were desired. Additionally, patients conveyed the importance of clinician education on how to deliver information and approach sensitive topics, particularly with younger patients. Additional clinician-identified intervention targets included CHD-related education earlier in the medical training, clinician education on navigating difficult conversations, patient education using innovative ways (i.e., through illustrations, diagrams, and 3D tools), and group educational sessions. Sources of Support Patients emphasized their interactions with clinicians and the role of the community as foundational targets for maintaining and improving their ACHD care. Some clinicians questioned their impact on patients they often see only once a year. However, patients valued strong connections with their clinicians and credited these relationships when they returned to care after long gaps. Patients who frequently switched clinicians struggled to build long-term relationships, leading to an imbalance in patient-clinician dynamics and a reduced ability to have a voice in their care. “initially I didn’t wanna go to the doctors. And now, I feel that I have a connection with the new doctors that I know” - Male Patient in their 30s. To strengthen patient-clinician relationships, patients sought support both during and outside clinic visits (e.g., direct access lines), greater transparency, and empathetic communication to feel reassured in managing their chronic condition. Additionally, patients emphasized the value of the diverse expertise within their peer community, particularly when seeking guidance on daily ACHD management. These interactions fostered a sense of support and belonging. Various platforms, including open forums, chat rooms, blogs, Zoom meetings, and Facebook groups, were identified as key spaces that helped cultivate a responsive and engaged ACHD community, bridging connections between patients and clinicians. Mapping of the barriers and enablers to COM-B and TDF domains Mapping the determinants of engagement or the intervention targets to behavior change theoretical frameworks i.e. COM-B and TDF domains allowed for a nuanced and deeper understanding into the priorities for future intervention and their potential mechanisms of action in terms of behavior. Table 3 provides a summary of some key determinants of engagement identified by the stakeholders, and how these determinants could be mapped to the COM-B and TDF domains to determine the intervention goals for potential future interventions. For e.g., it underscores that future interventions targeting to enhance education by increasing knowledge (TDF domain) of CHD could overcome barriers related to psychological capability domain and thus address barriers related to patients’ lack of understanding about their CHD or follow-up recommendations. Similarly, interventions targeting modeling such as peer support could help with overcoming barriers related to the TDF domains of social/ professional role and identity as well as goal setting to address the barriers within reflective motivation domain of the COM-B. View this table: View inline View popup Table 3: Summary of Engagement Determinants, Application of TDF and COM-B, and Proposed. Discussion We describe a novel in-depth understanding of the patient and clinician perspectives on how ACHD specialized care could be improved. Six categories emerged as determinants for specialized care: healthcare system and institutional structure, knowledge and education, sources of support, personal development, identity and personal resources, and ACHD’s placement in one’s life. The first three of these categories emerged as practical and feasible targets for future interventions. Based on our findings, we developed a novel ACHD patient engagement framework that provides a stakeholder and theory-driven infrastructure for developing and evaluating future interventions to improve ACHD specialized care ( Figure 3 ). Based on this framework, interventions targeting any of the prioritized categories for determinant of engagement could work by enhancing the knowledge, social/professional role or identity, reinforcement, or other TDF domains. This, in turn, could enhance the capability, opportunity, or motivation of ACHD patients to be engaged in their care, thus ultimately increasing patient satisfaction, specialized ACHD care, and health outcomes. Thus, mapping the categories for ACHD patient engagement to behavior change theoretical frameworks allows for a nuanced and deeper understanding of how and why future interventions might (or might not) work. Furthermore, given the interdependence of the categories, designing interventions in any one category (maybe those more readily actionable) could address multiple determinants within and between other categories. Download figure Open in new tab Figure 3: Stakeholder Theory-Based Framework for Improving ACHD Care. A model for improving ACHD care. The framework shows stakeholder solutions for future interventions mapped to behavioral theory sources of behavioral change. Many of the barriers and facilitators to ACHD specialized care in this study were similar to those described in the literature. However, two notable findings were related to language and caregiver support. In our study, language both facilitated and hindered patients’ engagement in their care. This is in contrast to the current literature that demonstrates non-English speaking households are more likely to be non-adherent with appointments and have feelings of disengagement with their clinicians. 27 – 28 However, our in-depth exploration of these issues revealed that while language may appear to be a barrier at first glance, it becomes more complex when the language barrier affects the caregiver or household of an English-proficient patient. In such cases, the patient often assumes a greater role in scheduling appointments, engaging in research about their heart condition, or supporting their caregivers. This enhanced proficiency enables them to become more involved in their own care and develop the skills necessary to advocate effectively, beginning in adolescence. Similarly, we observed that while caregiver support helped patients to develop self-management skills, too much support limited a patient’s ability for independent decision making. This may explain why the sudden loss of support (e.g., due to a caregiver’s passing), while initially frightening, often led patients to become more independent relatively quickly. Building ways to then empower patients to take on responsibility early is another target area for future intervention work. We also describe interdependence of the engagement determinants to enhance ACHD specialized care. This helped us to conceptualize the participant-identified solutions into prioritizing those that can be attainable with more straightforward and accessible interventions. For example, participant prioritized solutions centered around healthcare system and institutional structure, knowledge and education, and sources of support. These three categories highlighted interventions such as reimbursement for educational visits, centralized and updated resources to improve knowledge, or expert and peer support chat rooms-all of which can be designed and implemented using relatively straightforward approaches. At the same time, these interventions can also help reframe ACHD’s placement in one’s life (one of the six engagement determinants), thus overcoming barriers outside of the participant-prioritized categories of solutions. On the contrary, prioritizing interventions in the categories of personal development, identity and resources, and ACHD’s placement in life were felt to be more challenging and resource-intensive due to multiple factors. One could be the intrinsic, personal nature of these categories creating difficulties in developing interventions that meet diverse needs across the broader ACHD community. Another factor may be a lack of perceived ability to address structural barriers with smaller-scale interventions. For example, in the identity and personal resources category, participants reported inequitable allocation of resources and unequal treatment based on race/ethnicity, culture, language, and comorbidities as barriers to engagement. These barriers present broader systemic challenges that influence multiple aspects of healthcare and societal structures. While our participants identified these factors as crucial to a patient’s ability to engage with care, it is possible that solutions of this scale seemed too distant or unrealistic to be considered feasible intervention targets. Further, it is worth noting the difference in how solutions highlighted by clinicians varied from solutions highlighted by patients. Clinicians focused on macro-level and systemic interventions, whereas patients focused on more micro-level and personal interventions (i.e., their relationship with their provider and community). These differences are likely due to a patient’s personal lived experience with CHD (high depth of experience) compared to a clinician’s experience in treating hundreds of patients (high breadth of experience, but less depth). This goes to show that participants’ proposed interventions stem from their unique experiences and by addressing both perspectives, we gather a more complex and complete understanding of how to holistically improve ACHD care. Finally, many of the participant-prioritized solutions in this study, such as the implementation of a multidisciplinary, comprehensive, and formal transition program, are similar to what has been previously described. 29 – 33 However, our approach was novel where we applied behavioral theoretical frameworks to offer a unique and deeper insight into understanding how these proposed interventions could result in desired outcomes in ACHD. We used COM-B and TDF since they allow specific recommendations to be made for intervention design based on the desired source of behavior to be targeted. 17 – 19 Although this method does not guarantee success, it does increase the likelihood of any of the proposed solutions being successful, as it will target the determinants using the evidence of what works, for whom, and under which circumstances. Thus, policymakers and researchers can now effectively create specific recommendations to implement solutions in a transparent way using a shared language that documents the proposed theory of action of the solutions. For example, the goal of the various components of a formal transition program can now be emphasized to understand whether they impart education, training, or modeling to enhance the knowledge, skills, and motivation of patients to be active partners in their care. Limitations It is possible that there are perspectives of ACHD stakeholders not captured by the participants who were available and willing to be interviewed. We attempted to reduce the likelihood of missed viewpoints by recruiting a large and diverse sample of both patient and clinician stakeholders across various social and geographic domains. Furthermore, while we mapped engagement determinants to COM-B and TDF, other behavioral frameworks may be equally or better suited to capture the complexities of how patients interact with their health and healthcare and, subsequently, how likely they are to respond to ACHD interventions targeting their engagement. For instance, COM-B and TDF highlight all of the potential components driving a behavior needed to design and evaluate interventions. What they do not highlight is the relationship between components in terms of timing or causality (i.e., how one component leads into another and whether that component is further from or closer to the end outcome on the pathway of behavioral change). Future work can explore the utility of integrating additional behavioral frameworks into the work presented here. Finally, it is possible that having a different interviewer for Spanish-speaking participants than the rest of the patient cohort introduced bias. Steps were taken to mitigate differences between interviewers, such as a central interview guide. Ultimately, it was decided that the benefit of including the perspectives of monolingual Spanish speakers outweighed the potential risks. Conclusion We present patient and clinician-prioritized solutions for improving ACHD care conceptualized in terms of behavioral frameworks. Stakeholders centered on three target areas that can potentially lead to successful future interventions for ACHD care: healthcare system and institutional structure, knowledge and education, and sources of support. By considering these targets in future interventions, there’s a potential to align stakeholders’ desired solutions for ACHD care with robust behavioral change frameworks to maximize the efficacy of interventions. Furthermore, as demonstrated by the interdependence of engagement domains, it is possible that pursuing interventions in one category will influence many other determinants for engagement in care. Our stakeholder-theory-based approach to defining intervention targets for ACHD care aims to foster transparency and a shared understanding of future interventions. This approach clarifies what these interventions seek to change and how they can be implemented within an increasingly complex and resource-constrained healthcare system. Data Availability All data produced in the present study are available upon reasonable request to the authors Footnotes Funding statement updated to reflect National Heart, Lung, and Blood Institute grant; award number K23HL151866. References 1. ↵ Gilboa SM , Devine OJ , Kucik JE , et al. Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010 . 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