Illness Identity in Inflammatory Bowel Disease.

BACKGROUND: We examined the degree to which adults with inflammatory bowel disease (IBD) integrated their illness into their identity and linked illness identity to important patient-reported outcomes. METHODS: A total of 109 adults with IBD, aged 18 to 60 (Mage = 35.93; 77% women) completed questionnaires on the four illness identity dimensions (rejection, acceptance, engulfment, and enrichment), medication adherence, depressive symptoms, life satisfaction, health status, and health-related quality of life (HRQoL). The illness identity scores of adults with IBD were compared to existing data from adults with congenital heart disease (CHD), refractory epilepsy (RE), and multisystemic connective tissue disorders (MSDs) using multivariate analyses of covariance. In adults with IBD, associations between illness identity and patient-reported outcomes were examined through hierarchical regression analyses, controlling for sex, age, illness duration, diagnosis, self-reported flares, and co-existing illnesses. RESULTS: Adults with IBD scored higher on rejection and engulfment and lower on acceptance than adults with CHD, lower on rejection but higher on engulfment than adults with RE, and higher on engulfment and enrichment but lower on rejection than adults with MSDs. Higher engulfment scores were related to more depressive symptoms, lower life satisfaction, and a poorer health status and HRQoL. In contrast, higher enrichment scores were related to more life satisfaction and a better HRQoL. Rejection and acceptance were not uniquely related to any of the outcomes. CONCLUSIONS: Adults with IBD showed relatively high levels of engulfment. Substantial associations were observed between illness identity and patient-reported outcomes, with engulfment being the strongest, most consistent predictor.

Last year of life of adults with congenital heart diseases: causes of death and patterns of care.

AIMS: Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death and (ii) describe the patterns of healthcare utilization in the last year of life of adults with CHD. METHODS AND RESULTS: This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilization comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalizations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care, and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalized, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death. CONCLUSIONS: There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient's needs and preferences, and how the healthcare system can adequately respond.

Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea.

BACKGROUND: Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. METHODS: Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. RESULTS: Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. CONCLUSION: Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.

Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient-reported outcomes and healthcare use.

AIMS: The aims of this study were to investigate the development of illness identity, the degree to which the disease is integrated into one's identity, by identifying trajectory classes in adults with congenital heart disease (CHD) and to describe these classes in terms of age, sex, disease complexity, patient-reported outcomes (PROs) and healthcare use. DESIGN: This three-wave observational cohort study was carried from 2013 till 2015 and includes 276 adults (median age: 34 years; 54% men) with CHD. METHODS: Illness identity entails four dimensions: engulfment, rejection, acceptance and enrichment. PROs included perceived health status, quality of life and psychological distress. Latent class growth analysis, analysis of variance, Poisson regression and negative binomial regression analyses were performed. RESULTS: Illness identity was relatively stable over time. The identified classes were meaningfully different in terms of age, disease complexity, PROs and healthcare use. Patients who did not reject their disease, patients who were not overwhelmed or patients who accepted their disease over time reported better health status and quality of life and less psychological distress. Less hospitalizations and visits to the general practitioner and medical specialist were reported by patients who were not overwhelmed or patients who accepted their disease over time. Patients with low rejection and high enrichment scores over time reported more visits at the general practitioner. CONCLUSION: These findings indicate that illness identity should be taken into account when trying to understand and optimize PROs and healthcare use of adults with CHD. IMPACT: This study scrutinizes the development and clinical meaningfulness of illness identity measured over time for adults with CHD. Illness identity was found to be stable over time. Moreover, the illness identity trajectories differed in terms of PROs and healthcare use, showing that measuring and intervening upon illness identity could be a potential pathway to optimize PROs and healthcare use.

Healthcare system inputs and patient-reported outcomes: a study in adults with congenital heart defect from 15 countries.

BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease. METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.

Patient and treatment characteristics associated with patient activation in patients undergoing hemodialysis: a cross-sectional study.

BACKGROUND: Patient activation is associated with better outcomes and lower costs. Although the concept is widely investigated, little attention was given to patient activation and its predictors in patients undergoing hemodialysis. Hence, we aimed to investigate the level of patient activation and aimed to determine patient- and treatment-related predictors of activation in patients undergoing hemodialysis. METHODS: This cross-sectional observational study recruited patients undergoing hemodialysis in three Flemish hospitals. Participants were questioned about patient characteristics (i.e., age, sex, education, employment, children, social support, leisure-time, living condition, and care at home), treatment- and health-related characteristics (i.e., hospital, time since first dialysis, transplantation, self-reported health (EQ-VAS) and depressive symptoms (PHQ-2)), and patient activation (PAM-13). Univariate and multiple linear regression analyses with dummy variables were conducted to investigate the associations between the independent variables and patient activation. RESULTS: The average patient activation-score was 51. Of 192 patients, 44% patients did not believe they had an important role regarding their health. Multiple linear regression showed that older patients, who reported being in bad health, treated in a particular hospital, without leisure-time activities, and living in a residential care home, had lower patient activation. These variables explained 31% of the variance in patient activation. Based on literature, we found that activation of patients on hemodialysis is low, compared to that of other chronic patient groups. CONCLUSION: It could be useful to implement patient activation monitoring, since the level of activation is low in patients undergoing hemodialysis. Older patients, who reported being in bad health, treated in a particular hospital, without leisure-time activities, living in a residential care home, are at higher risk for lower activation.

Using ChatGPT and Google Bard to improve the readability of written patient information: a proof of concept.

Patient information materials often tend to be written at a reading level that is too advanced for patients. In this proof-of-concept study, we used ChatGPT and Google Bard to reduce the reading level of three selected patient information sections from scientific journals. ChatGPT successfully improved readability. However, it could not achieve the recommended 6th-grade reading level. Bard reached the reading level of 6th graders but oversimplified the texts by omitting up to 83% of the content. Despite the present limitations, developers of patient information are encouraged to employ large language models, preferably ChatGPT, to optimize their materials.

What if your patient switches from Dr. Google to Dr. ChatGPT? A vignette-based survey of the trustworthiness, value, and danger of ChatGPT-generated responses to health questions.

ChatGPT is a new artificial intelligence system that revolutionizes the way how information can be sought and obtained. In this study, the trustworthiness, value, and danger of ChatGPT-generated responses on four vignettes that represented virtual patient questions were evaluated by 20 experts in the domain of congenital heart disease, atrial fibrillation, heart failure, or cholesterol. Experts generally considered ChatGPT-generated responses trustworthy and valuable, with few considering them dangerous. Forty percent of the experts found ChatGPT responses more valuable than Google. Experts appreciated the sophistication and nuances in the responses but also recognized that responses were often incomplete and sometimes misleading.

Exploring the full potential of the electronic health record: the application of natural language processing for clinical practice.

The electronic health record contains valuable patient data and offers opportunities to administer and analyze patients' individual needs longitudinally. However, most information in the electronic health record is currently stored in unstructured text notations. Natural Language Processing (NLP), a branch of artificial intelligence that enables computers to understand, interpret, and generate human language, can be used to delve into unstructured text data to uncover valuable insights and knowledge. This article discusses different types of NLP, the potential of NLP for cardiovascular nursing, and how to get started with NLP as a clinician.

The Temperature Feature of ChatGPT: Modifying Creativity for Clinical Research.

More clinicians and researchers are exploring uses for large language model chatbots, such as ChatGPT, for research, dissemination, and educational purposes. Therefore, it becomes increasingly relevant to consider the full potential of this tool, including the special features that are currently available through the application programming interface. One of these features is a variable called temperature, which changes the degree to which randomness is involved in the model's generated output. This is of particular interest to clinicians and researchers. By lowering this variable, one can generate more consistent outputs; by increasing it, one can receive more creative responses. For clinicians and researchers who are exploring these tools for a variety of tasks, the ability to tailor outputs to be less creative may be beneficial for work that demands consistency. Additionally, access to more creative text generation may enable scientific authors to describe their research in more general language and potentially connect with a broader public through social media. In this viewpoint, we present the temperature feature, discuss potential uses, and provide some examples.

Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.

OBJECTIVE: This longitudinal study explores the relationship between illness identity and well-being in emerging adults with congenital heart disease (CHD), aiming to understand the factors contributing to well-being in individuals with CHD. METHOD: Dutch-speaking emerging adults with CHD (N = 254, age range = 24-28 years) participated in a three-wave study, which is part of the I-DETACH 2 project. Cross-lagged analyses examined the directionality of effects between illness identity and well-being. Multivariate latent class growth analysis identified developmental trajectory classes of illness identity. Multigroup latent growth curve modeling investigated differences in the development of well-being among these classes. RESULTS: Bidirectional associations were uncovered between illness identity and well-being. For instance, acceptance predicted better quality of life and less depressive symptoms over time. Three trajectory classes of illness identity were identified: high (i.e., as compared to the sample mean) acceptance and enrichment with low rejection and engulfment (Class 1), high rejection with low levels in the other dimensions (Class 2), and high rejection and engulfment along with high enrichment and low acceptance (Class 3). Individuals in Class 3 experienced the worse well-being. In addition, individuals with complex heart defects were strongly represented in this class. CONCLUSIONS: This study demonstrates the significance of illness identity in understanding individual differences in well-being among emerging adults with CHD. Additionally, this study provided valuable insight in the development of illness identity and its longitudinal relationship with well-being. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A rapid review on current and potential uses of large language models in nursing.

BACKGROUND: The application of large language models across commercial and consumer contexts has grown exponentially in recent years. However, a gap exists in the literature on how large language models can support nursing practice, education, and research. This study aimed to synthesize the existing literature on current and potential uses of large language models across the nursing profession. METHODS: A rapid review of the literature, guided by Cochrane rapid review methodology and PRISMA reporting standards, was conducted. An expert health librarian assisted in developing broad inclusion criteria to account for the emerging nature of literature related to large language models. Three electronic databases (i.e., PubMed, CINAHL, and Embase) were searched to identify relevant literature in August 2023. Articles that discussed the development, use, and application of large language models within nursing were included for analysis. RESULTS: The literature search identified a total of 2028 articles that met the inclusion criteria. After systematically reviewing abstracts, titles, and full texts, 30 articles were included in the final analysis. Nearly all (93 %; n = 28) of the included articles used ChatGPT as an example, and subsequently discussed the use and value of large language models in nursing education (47 %; n = 14), clinical practice (40 %; n = 12), and research (10 %; n = 3). While the most common assessment of large language models was conducted by human evaluation (26.7 %; n = 8), this analysis also identified common limitations of large language models in nursing, including lack of systematic evaluation, as well as other ethical and legal considerations. DISCUSSION: This is the first review to summarize contemporary literature on current and potential uses of large language models in nursing practice, education, and research. Although there are significant opportunities to apply large language models, the use and adoption of these models within nursing have elicited a series of challenges, such as ethical issues related to bias, misuse, and plagiarism. CONCLUSION: Given the relative novelty of large language models, ongoing efforts to develop and implement meaningful assessments, evaluations, standards, and guidelines for applying large language models in nursing are recommended to ensure appropriate, accurate, and safe use. Future research along with clinical and educational partnerships is needed to enhance understanding and application of large language models in nursing and healthcare.

Anxiety and Depression in Adults With Congenital Heart Disease.

BACKGROUND: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample. OBJECTIVES: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease-International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms. METHODS: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category. RESULTS: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001). CONCLUSIONS: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603).

Frailty and Cognitive Function in Middle-Aged and Older Adults With Congenital Heart Disease.

BACKGROUND: Life expectancy of patients with congenital heart disease (CHD) has increased rapidly, resulting in a growing and aging population. Recent studies have shown that older people with CHD have higher morbidity, health care use, and mortality. To maintain longevity and quality of life, understanding their evolving medical and psychosocial challenges is essential. OBJECTIVES: The authors describe the frailty and cognitive profile of middle-aged and older adults with CHD to identify predictor variables and to explore the relationship with hospital admissions and outpatient visits. METHODS: Using a cross-sectional, multicentric design, we included 814 patients aged ≥40 years from 11 countries. Frailty phenotype was determined using the Fried method. Cognitive function was assessed by the Montreal Cognitive Assessment. RESULTS: In this sample, 52.3% of patients were assessed as robust, 41.9% as prefrail, and 5.8% as frail; 38.8% had cognitive dysfunction. Multinomial regression showed that frailty was associated with older age, female sex, higher physiologic class, and comorbidities. Counterintuitively, patients with mild heart defects were more likely than those with complex lesions to be prefrail. Patients from middle-income countries displayed more prefrailty than those from higher-income countries. Logistic regression demonstrated that cognitive dysfunction was related to older age, comorbidities, and lower country-level income. CONCLUSIONS: Approximately one-half of included patients were (pre-)frail, and more than one-third experienced cognitive impairment. Frailty and cognitive dysfunction were identified in patients with mild CHD, indicating that these concerns extend beyond severe CHD. Assessing frailty and cognition routinely could offer valuable insights into this aging population.

Profiles of patients referred to specialized palliative care from the cardiology department at a university hospital: an 11-year longitudinal retrospective study.

BACKGROUND: Although the majority of patients with cardiovascular diseases (CVD) have a significant symptom burden and progressive course towards the end of life, only a small proportion of patients currently receive palliative care. The current referral practices to palliative care from the cardiology department need to be scrutinized. The current study aimed to examine: 1) the clinical profile; 2) time between referral to palliative care and death; and 3) place of death for CVD patients who were referred to palliative care from a cardiology department. METHODS: This retrospective descriptive study included all patients who were referred to the mobile palliative care team from the cardiology unit in the University Hospital of Besançon in France between January 2010 and December 2020. Information was extracted from the medical hospital files. RESULTS: A total of 142 patients were included, of whom 135 (95%) died. The mean age at the time of death was 76±14 years. The median time between referral to palliative care and death was 9 days. Most patients had chronic heart failure (54%). A total of 17 patients (13%) died at home. CONCLUSIONS: This study showed that referral of patients to palliative care from the cardiology department is suboptimal and a large proportion of patients die in the hospital setting. Further prospective studies are warranted to investigate whether these dispositions correspond to patients' wishes and end-of-life care needs, and should investigate how the integration of palliative care into the care of cardiovascular patients can be improved.

Research Electronic Data Capture (REDCap): tackling data collection, management, storage, and privacy challenges.

Data are the basis of research; without data, there is no research. However, growing internationalization of research, increased complexity of study designs, and stricter legislation make high-quality data collection, management, and storage more important, but also more challenging than ever. This article provides an overview of common challenges clinical researchers face when collecting, managing, and storing data and how REDCap, Research Electronic Data Capture, can be a possible solution to address these challenges.

From new kid on the block to leading journal: a review and reflection on the first 20 years of the European Journal of Cardiovascular Nursing.

BACKGROUND: This year marks the 20th birthday of the European Journal of Cardiovascular Nursing (EJCN). The official journal of the Association of Cardiovascular Nursing and Allied Professionals, is now recognized as one of the leading nursing and allied professional journals. AIMS: This article reflects on the developments and impact of the journal over its 20-year lifespan. METHODS AND RESULTS: We present a descriptive account of the journal from inception (2002) until present day (2021), using data provided by the EJCN editorial office and extracted from published and available information. In the last 20 years, the EJCN has published 20 volumes, 106 issues, and 1320 papers from 79 countries. The volume and quality of papers has been consistently increasing, culminating in a 2020 impact factor of 3.908, the highest in its history, ranking second for nursing science. Papers are predominantly patient focused with a range of research methods that cover an extensive range of cardiovascular conditions. Authors who contributed to the first issue continued their contribution; 293 articles in total. CONCLUSION: The EJCN has evolved into a leading journal of cardiovascular care. As the journal enters its next era, with a new Editor-in-Chief, it is appropriate to have reflected on the phenomenal contribution of the outgoing Editor-in-Chief, and the editorial team, over the last 20 years.

Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?

AIMS: Absence from work or school in patients with congenital heart disease (CHD) is an understudied domain. Illness identity, which is the degree to which a chronic illness is integrated into one's identity, could be hypothesized to be a predictor for absenteeism. This study determined the proportion of young adults with CHD absent from work or school and examined if illness identity dimensions were related to absenteeism. METHODS AND RESULTS: In a cross-sectional study, we included 255 patients with CHD. Data on absence from work or school over the past 12 months were obtained using self-report. The Illness Identity Questionnaire was used, which comprises four illness identity dimensions: rejection, engulfment, acceptance, and enrichment. Linear models with doubly robust estimations were computed after groups were balanced using propensity weighting. Absence from work/school occurred in 69% of young adults with CHD. Absence because of CHD specifically was present in 15% of the patients. Engulfment was significantly related to both all-cause absence and absence for CHD reasons. CONCLUSIONS: Patients who strongly define themselves in terms of their heart disease were more likely to be absent from work or school than those who did not. If this finding can be confirmed in future research, it has the potential to be a target for intervention to influence work/school absence.

The COVID-19 pandemic as experienced by adults with congenital heart disease from Belgium, Norway, and South Korea: impact on life domains, patient-reported outcomes, and experiences with care.

AIMS: The coronavirus disease-2019 (COVID-19) pandemic poses significant challenges to many groups within societies, and especially for people with chronic health conditions. It is, however, unknown whether and how the pandemic has thus far affected the physical and mental health of patient populations. Therefore, we investigated how the pandemic affected the lives of adults with congenital heart disease (CHD), compared pre- and peri-pandemic patient-reported outcome measures (PROMs) and a patient-reported experience measure (PREM), and investigated whether having had COVID-19 impacted pre-/peri-pandemic differences of the PROMs and PREM. METHODS AND RESULTS: As part of the ongoing APPROACH-IS II project, we longitudinally surveyed 716 adults with CHD from Belgium, Norway, and South Korea. Pre-pandemic measures were administered from August 2019 to February 2020 and the peri-pandemic surveys were completed September 2020-April 2021. The majority of patients indicated that their social lives (80%), mental health (58%), and professional lives/education (51%) were negatively impacted by the pandemic. Patients felt worried (65%), were afraid (55%), reported the pandemic felt 'close' to them (53%), and were stressed (52%). However, differences between pre- and peri-pandemic scores on the PROMs and PREM were negligibly small (Cohen's d < 0.20). Across measures, 5.8-15.8% of patients demonstrated changes (improved or worsened scores) that exceeded the minimal clinically important difference. There were no difference-in-differences for PROMs and PREM between patients who did vs. did not have COVID-19. CONCLUSIONS: Although the COVID-19 pandemic has been disruptive in many ways, pre- to peri-pandemic changes in PROMs and PREM of adults with CHD were negligibly small.

Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.

BACKGROUND: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II. METHODS/DESIGN: APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. DISCUSSION: APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.