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Structured Abstract: Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients’ psychosocial health. Objective: We aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22–44); 52% identified as female and 72% non-Hispanic white. Participants’ anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term “resilience,” all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.

Background: Because adverse events are more common than in the general population, pregnancy is a high-risk experience for some patients with adult congenital heart disease (ACHD). Guidelines for pregnancy are based on published literature, informed by adverse clinical outcomes with less priority given to patients' lived experiences. This study aims to describe ACHD patients' expectations for and experiences with pregnancy, including factors that influenced patients’ perceived quality of care.” Methods: We conducted a qualitative study of 25 patients who received care between 2010 and 2019. Purposive sampling was used to gain diversity in ACHD lesion complexity, race, age at pregnancy, and marital status. Semi-structured telephone interview data were analyzed using thematic analysis. Results: Mean age at pregnancy was 29 years (range 15–41 years), and 84% had more than one completed pregnancy. ACHD was simple in six participants (24%), moderate in 11 (44%), and complex in eight (32%). Participants' perceptions of pregnancy care were influenced by their experiences in four domains: 1) their existing expectations, derived from prior clinicians' counsel and from observations of others' pregnancies; 2) clinicians' ability and willingness to partner with the patient to address their individual needs, including pre-pregnancy testing, pregnancy education, and planning for birth and delivery; 3) clinicians' recommendations that account for logistical reality and patients’ unique life situations; and 4) the importance of clinician confidence and communication in providing care for patients with ACHD. Conclusion: To achieve positive pregnancy outcomes, ACHD patients favor partnerships with clinicians centered on education, realistic recommendations, and good communication.

Recommendations for advance care planning in adults with congenital heart disease were recently published, reinforcing the role of advance care planning as an essential component of patient-centered care. In significant ways, the adult congenital heart disease population differs from the “typical” elderly population about whom much of the palliative care literature is written. Herein we report the results of a multidisciplinary conference focusing on the unique nature of this population and their needs for advance care planning. First, we describe the characteristics of adults with congenital heart disease that set them apart, including childhood illness and early interactions with the healthcare system. Then we give tailored recommendations to providers for how to effectively elicit their patients’ goals and values, in order to counsel them about the future.

STRUCTURED Abstract: Background: As clinical care and research in adult congenital heart disease (ACHD) increasingly include a focus on quality of life, hearing and reflecting on our patients’ experiences must be a priority. The objective of this study was to describe how living with this chronic illness has affected the adult lives of patients living with ACHD. Methods: We conducted a qualitative study of 25 participants in which we asked about the impact of ACHD on their quality of life. We used thematic analysis to analyze the interview data and identified themes reflecting patients’ reported experiences. Results: Study participants were a mean age of 38 years (range 21–63 years) and reported good functional status. ACHD was characterized as simple (24%), moderate (32%), or complex (44%). Three major themes arose: 1) impact of ACHD on identity, including perception of “normal,” self-esteem, and motivation; 2) sources of emotional distress; and 3) influence on adult decision-making, including careers and relationships. Conclusion: Living with ACHD impacts important aspects related to self-perceived quality of life. Addressing these concerns is important to providing comprehensive, patient-centered ACHD care.