Effect of an in-hospital medication self-management intervention (SelfMED) on medication adherence in polypharmacy patients postdischarge: protocol of a pre-post intervention study.

INTRODUCTION: Healthcare providers usually manage medication for patients during hospitalisation, although patients are expected to self-manage their medication after discharge. A lack of self-management competencies is found to be associated with low adherence levels and medication errors harming patients' health. Currently, patients seldom receive support or education in medication self-management. When self-management is allowed during hospitalisation, it is rarely provided using a structured, evidence-based format. Therefore, an in-hospital medication self-management intervention (ie, SelfMED) was developed based on current evidence. To date, empirical data demonstrating the effect of SelfMED on medication adherence are lacking. This study primarily aims to evaluate the effect of the SelfMED intervention on medication adherence 2 months postdischarge in polypharmacy patients, as compared with usual care. METHODS AND ANALYSIS: A multicentre pre-post intervention study will be conducted. The study will start with a control phase investigating usual care (ie, medication management entirely provided by healthcare providers), followed by an intervention period, investigating the effects of the SelfMED intervention. SelfMED consists of multiple components: (1) a stepped assessment evaluating patients' eligibility for in-hospital medication self-management, (2) a monitoring system allowing healthcare providers to follow up medication management and detect problems and (3) a supportive tool providing healthcare providers with a resource to act on observed problems with medication self-management. Polymedicated patients recruited during the control and intervention periods will be monitored for 2 months postdischarge. A total of 225 participants with polypharmacy should be included in each group. Medication adherence 2 months postdischarge, measured by pill counts, will be the primary outcome. Secondary outcomes include self-management, medication knowledge, patient and staff satisfaction, perceived workload and healthcare service utilisation. ETHICS AND DISSEMINATION: The ethics committee of the Antwerp University Hospital approved the study (reference no: B3002023000176). Study findings will be disseminated through peer-reviewed publications, conference presentations and summaries in layman's terms. TRIAL REGISTRATION NUMBER: ISRCTN15132085.

COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol.

BACKGROUND: During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology. METHODS AND ANALYSIS: A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis. RESULTS: Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted. CONCLUSION: Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program. PRACTICE IMPLICATIONS: Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.

Development of a competency framework for advanced practice nurses: A co-design process.

AIMS: The aim of the study was to develop a comprehensive competency framework for advanced practice nurses in Belgium. DESIGN: A co-design development process was conducted. METHODS: This study consisted of two consecutive stages (November 2020-December 2021): (1) developing a competency framework for advanced practice nurses in Belgium by the research team, based on literature and (2) group discussions or interviews with and written feedback from key stakeholders. 11 group discussions and seven individual interviews were conducted with various stakeholder groups with a total of 117 participants. RESULTS: A comprehensive competency framework containing 31 key competencies and 120 enabling competencies was developed based on the Canadian Medical Education Directions for Specialists Competency Framework. These competencies were grouped into seven roles: clinical expert and therapist, organizer of quality care and leader in innovation, professional and clinical leader, collaborator, researcher, communicator and health promoter. CONCLUSION: The developed competency framework has resemblance to other international frameworks. This framework emphasized the independent role of the advanced practice nurse and provided guidance in a clear task division and delegation to other professionals. It can provide a solid foundation for delivering high-quality, patient-centred care by advanced practice nurses in the years to come. IMPLICATIONS FOR THE PROFESSION: This competency framework can guide further development of advanced practice nursing education in Belgium and represents a starting point for future evaluation of its feasibility and usability in education and clinical practice. Advanced practice nurses and healthcare managers can also use the framework as an instrument for personal and professional development, performance appraisal, and further alignment of these function profiles in clinical practice. Finally, this framework can inform and guide policymakers towards legal recognition of advanced practice nursing in Belgium and inspire the development of advanced practice nursing profiles in countries where these profiles are still emerging. IMPACT: What problem did the study address? The absence of a detailed competency framework for advanced practice nurses complicates legal recognition, role clarification and implementation in practice in Belgium. A rigorously developed competency framework could clarify which competencies to integrate in future advanced practice nursing education, mentorship programs and practice. What were the main findings? The competency framework outlined seven roles for advanced practice nurses: clinical expert and therapist, organizer of quality care and leader in innovation, professional and clinical leader, collaborator, researcher, communicator, and health promoter. Differentiation from other expert nursing profiles and clinical autonomy of advanced practice nurses were pivotal. Where and on whom will the research have impact? The comprehensive competency framework for advanced practice nurses and the collaborative methodology used can inspire other countries where these profiles are still emerging. The competency framework can be used as an instrument for role clarification, performance appraisals, continuous professional development, and professional (e-)portfolios. The competency framework can guide policymakers when establishing Belgian's legal framework for advanced practice nurses. REPORTING METHOD: The authors have adhered to CONFERD-HP: recommendations for reporting COmpeteNcy FramEwoRk Development in health professions. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution in the design of the study. A patient advisory panel commented on the developed competency framework.

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.

Breathing across ages: a systematic review on challenges and components of transitional care for young people with asthma.

Introduction: Asthma is a chronic condition that affects millions of adolescents and young adults (AYA) worldwide. The transition from pediatric to adult care presents unique challenges for this population, affecting their self-management, quality of life and overall health outcomes. This systematic review aims to consolidate the available evidence on challenges encountered by AYA with asthma during the transition period from child to AYA and on the key elements of transitional care for AYAs with asthma including the outcomes achieved, ultimately enhancing outcomes. Methodology: A systematic literature search was performed in PubMed, Embase, Medline, Scopus, and Web of Science from their inception to October 2, 2023, to provide an overview of currently available literature. Primary quantitative and qualitative studies, published in peer-reviewed journals that focused on AYA with a confirmed diagnosis of asthma were considered if they focused on challenges encountered by AYA with asthma during the transition process and/or components of transitional care and their outcomes assessed. Results: A total of 855 studies were initially identified and 6 articles were included in this systematic literature review. Several challenges experienced by AYA with asthma were identified including maintaining medication adherence, the need to take responsibility and being involved, understanding their condition and its severity, feeling left out of the care system, and experiencing a lack of engagement. The identified transitional care components included a standardized form for medical data transmission, a joint consultation and to offer several longer consultations. Conclusion: Several international guidelines for asthma care recommend implementing transition programs in the care for AYA with asthma. Such transition programs should include a comprehensive and individualized approach addressing several challenges faced, to ensure optimal outcomes post-transition. However, to date, data on effective components of transitional care facilitating good outcomes were found to be limited. This systematic review underscores the need for larger studies evaluating the effect of the components of transition programs.

Evaluation of methods measuring medication adherence in patients with polypharmacy: a longitudinal and patient perspective.

PURPOSE: To explore patients' willingness to have medication adherence measured using different methods and evaluate the feasibility and validity of their combination (i.e., pill counts, a medication diary and a questionnaire assessing adherence two months post-discharge). METHODS: (1) A cross-sectional evaluation of the willingness of patients with polypharmacy to have their medication adherence measured post-discharge. (2) Medication adherence was monitored during two months using pill counts based on preserved medication packages and a diary in which patients registered their adherence-related problems. During a home visit, the Probabilistic Medication Adherence Scale (ProMAS) and a questionnaire on feasibility were administered. RESULTS: A total of 144 participants completed the questionnaire at discharge. The majority was willing to communicate truthfully about their adherence (97%) and to share adherence-related information with healthcare providers (99%). More participants were willing to preserve medication packages (76%) than to complete a medication diary (67%) during two months. Most participants reported that preserving medication packages (91%), completing the diary (99%) and the ProMAS (99%) were no effort to them. According to the majority of participants (60%), pill counts most accurately reflected medication adherence, followed by the diary (39%) and ProMAS (1%). Medication adherence measured by pill counts correlated significantly with ProMAS scores, but not with the number of diary-reported problems. However, adherence measured by the medication diary and ProMAS correlated significantly. CONCLUSION: Combining tools for measuring adherence seems feasible and can provide insight into the accordance of patients' actual medication use with their prescribed regimen, but also into problems contributing to non-adherence.

Managing Pediatric Asthma Exacerbations: The Role of Timely Systemic Corticosteroid Administration in Emergency Care Settings-A Multicentric Retrospective Study.

BACKGROUND: Asthma is the most prevalent chronic respiratory condition in children. An asthma exacerbation (AE) is a frequent reason for emergency department (ED) visits. An important step in the management of a moderate to severe AE is the administration of systemic corticosteroids (SCS) within 1 h after ED presentation. This study aimed to determine the timing of SCS administration and correlate this with the length of stay and oxygen therapy duration and to explore factors predicting timely administration. METHODS: This study used a retrospective multicenter observational design based on electronic medical records review. Children aged < 18 years, presenting to the ED with a moderate to severe AE were included. RESULTS: 205 patients were included. Only 28 patients received SCS within 60 min after ED arrival. The median time to SCS administration was 169 min (Q1 92-Q3 380). A correlation was found between timing and oxygen treatment duration (r = 0.363, p < 0.001) and length of stay (r = 0.368, p < 0.001). No patient characteristics predicted timely SCS administration. CONCLUSIONS: Three in four children who presented with a moderate to severe AE at the ED did not receive SCS within the first hour. A prolonged timing of SCS administration correlated with a prolonged length of stay and extended need for oxygen support.

Evaluation of a nurse-led multi-component transition program for adolescents with congenital heart disease.

OBJECTIVE: To evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) 'Transition With a Heart' (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up. METHODS: A study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed. A multivariable regression analysis explored the outcomes' determinants. RESULTS: In the intervention group, 28 adolescents and 25 parents were included, and 53 adolescents and 18 parents as controls. Adolescents' knowledge significantly increased after completing TWAH (from 59.8% to 75.7%;p < 0.01). Their knowledge was positively correlated with TWAH (ß = +13.3;p < 0.01). Adolescents' transition experiences were also positively related to TWAH (general experience: ß = +5.5;p < 0.01; transfer satisfaction: ß = +0.8; p < 0.01). Adolescents' QoL was mainly determined by CHD complexity and not by TWAH. No one showed gaps in follow-up. TWAH was not associated with parents' transition experiences. CONCLUSION: Implementing TWAH substantially improved adolescents' disease-related knowledge and transition experiences. PRACTICE IMPLICATIONS: The results regarding transition experiences need to be confirmed by further research. The TWAH design with the person-tailored educational program, skills training, and the transition coordinator can be used in settings with other chronic diseases.

Acquired cardiovascular disease in adults with congenital heart disease.

Rates of successful surgical repair and life expectancy for patients with congenital heart disease have increased dramatically in recent decades. Thanks to advances in diagnosis, treatment, and follow-up care, an ever-increasing number of individuals with congenital heart disease are reaching advanced age. The exposure to cardiovascular risk factors during their lifetime is modifying the outlook and late clinical trajectory of adult congenital heart disease (ACHD). Their disease burden is shifting from congenital to acquired, primarily atherosclerotic cardiovascular disease (ASCVD) with worrisome consequences. In addition, the complex background of ACHD often curbs appropriate preventive strategies by general practitioners or adult cardiologists. Comprehensive guidance for the prevention and management of acquired heart disease in ACHD patients is currently not available, as this topic has not been covered by the European Society of Cardiology (ESC) guidelines on cardiovascular disease prevention or the ESC guidelines for the management of ACHD. In this document, a state-of-the-art overview of acquired heart disease in ACHD patients and guidance on ASCVD prevention for both ACHD specialists and non-ACHD cardiologists are provided. The aim is to provide a clinical consensus statement to foster the development of a sustainable strategy for the prevention of ASCVD in a practical and simple-to-follow way in this ever-growing cardiovascular cohort, thus reducing their cardiovascular burden.

Comparing youth with and without type 1 diabetes on perceived parenting and peer functioning: a propensity weighting approach.

The premise of this study was to gain more insight into whether type 1 diabetes (T1D) can impact how youth perceive parents and peers. To address limitations of previous observational studies comparing youth with T1D to control youth, propensity weighting was used to mimic a randomized controlled trial. A total of 558 youth with T1D and 426 control youth (14-26y) completed questionnaires on parental responsiveness, psychological control, overprotection, friend support, extreme peer orientation, and a host of background and psychological functioning variables. The groups were statistically weighted to become as comparable as possible except for disease status. The analysis plan and hypotheses were preregistered on the open science framework. Youth with T1D perceived their mothers to be more overprotective, perceived fewer friend support, and were less extremely oriented toward peers than control youth. There were no group differences for paternal overprotection and paternal and maternal responsiveness and psychological control. Mothers of youth with T1D seem at risk to practice overprotective parenting and clinicians could play an important role in making mothers aware of this risk. However, the absence of group differences for the maladaptive parenting dimension of psychological control and adaptive dimension of responsiveness are reassuring and testify to the resilient nature of youth with T1D and their families. Additionally, there is accumulating evidence that T1D could interfere with engaging in supportive friendships.

The Development of Recommendations for Healthcare Providers to Support Patients Experiencing Medication Self-Management Problems.

Medication self-management problems such as the inability to correctly obtain, understand, organize, administer or monitor medication can result in negative patient outcomes. However, supportive tools for healthcare providers to assist patients with medication self-management problems are lacking. This study aimed to develop recommendations for healthcare providers to support patients with polypharmacy who experience medication self-management problems. A three-phase study was conducted starting with (1) the mapping of medication self-management problems, followed by (2) a scoping review providing a list of relevant interventions and actions for each respective problem and (3) a three-round modified e-Delphi study with experts to reach consensus on the relevance and clarity of the recommended interventions and actions. The cut-off for consensus on the relevance and clarity of the recommendations was set at 80% expert agreement. Experts could propose additional recommendations based on their professional experience and expertise. The experts (n = 23) involved were healthcare professionals (i.e., nurses, pharmacists, and physicians) with specific expertise in medication management of patients with polypharmacy. Simultaneous with the second e-Delphi round, a panel of patients with polypharmacy (n = 8) evaluated the usefulness of recommendations. Results obtained from the patient panel were fed back to the panel of healthcare providers in the third e-Delphi round. Descriptive statistics were used for data analysis. Twenty medication self-management problems were identified. Based on the scoping review, a list of 66 recommendations for healthcare providers to support patients with the identified medication self-management problems was composed. At the end of the three-round e-Delphi study, the expert panel reached consensus on the relevance and clarity of 67 recommendations, clustered according to the six phases of the medication self-management model by Bailey et al. In conclusion, this study resulted in a guidance document including recommendations that can serve as a resource for healthcare providers to support patients with polypharmacy in case of medication self-management problems. Future research should focus on the evaluation of the feasibility and user-friendliness of the guide with recommendations in clinical practice.

Preferences for disease-related information and transitional skills among adolescents with congenital heart disease in the early transitional stage.

PURPOSE: The transition towards adult-focused healthcare comprises a complex process requiring careful, individualized guidance of adolescents with congenital heart disease (CHD). Detailed data on their preferences regarding disease-related information and acquirable transitional skills are mostly lacking. We examined the preferences of CHD adolescents in the early transition stage. METHODS: A cross-sectional descriptive study was performed with adolescents recruited from a transition program. Two questionnaires assessing needs for information and transitional skills were used. Only questionnaires completed in the early transition stage were included. RESULTS: Forty-nine adolescents participated (mean age 15.9 ± 1.2 years, 43% girls). 59% requested information about their heart and previous and/or future surgeries/interventions, 45% about sports and medication, and a maximum of 27% about psychosocial topics. More girls than boys requested surgical information (76% versus 46%; p = 0.04). Adolescents with severely complex CHD more often requested information about medication than those with moderately complex CHD (63% versus 28%; p = 0.02). Older adolescents were less likely to request surgical information (OR = 0.53; 95%CI [0.26-0.88]; p = 0.03). Up to 83% of the adolescents perceived their skills as insufficient, but less than 14% was interested in acquiring skills.    Conclusion: Adolescents were mainly interested in medical topics, followed by lifestyle information. The informational needs tended to decrease with age. Timely gauging individual needs and delivering information, ideally in the early teens, appear important when providing person-tailored transitional care in CHD. Paradoxically, although the transitional skills were low-perceived, there was limited motivation to improve them. This paradox requires further investigation to better tailor transition interventions.     Clinical trial registration: Not applicable. WHAT IS KNOWN: • Transition towards adult life and care requires careful patient guidance. A person-tailored approach is strongly encouraged. However, details on preferences regarding disease-related information and transitional skills are scarce in adolescents with CHD. WHAT IS NEW: • This study showed that adolescents with CHD in early transition mainly need medical-related information. Their informational needs tend to decrease with age necessitating timely gauging for interest and delivering information. Adolescents report a low need to acquire transitional skills despite low self-esteemed skills levels.

Shared decision making on medication use between nurses and patients in an oncology setting: A qualitative descriptive study.

PURPOSE: (i) To explore patients' and nurses' experiences with medication-related shared decision making (SDM) (i.e., familiarity with the concept, application of medication-related SDM, barriers and facilitators towards its application) and (ii) to explore their role perceptions, respectively. METHODS: A qualitative study was conducted in which seven interviews with oncological patients and a focus group interview with six nurses were performed. Prior to the interviews, observations of the application of shared decision making were conducted using the OPTION-12 scale. The observations were used exclusively to trigger the group discussion. Data were collected from November 2020 until March 2021. RESULTS: According to participants, the application of SDM regarding medication by nurses in oncology is limited. Barriers mentioned were health status, medication-related knowledge, the therapeutic nurse-patient relationship, time pressures and workload. Patients valued nurses' contribution to SDM regarding medication and perceived them as key persons because of their advocating, informative, facilitating and supportive role. Individual and contextual factors determined patients' desire for involvement in medication-related decisions. DISCUSSION: Participants solely concentrated on SDM concerning drug choice and management of therapeutic and adverse effects. The patients' and nurses' experiences and perceptions towards SDM in other domains of pharmaceutical care need further investigation.

Nurse-led care after ablation of atrial fibrillation: a randomized controlled trial.

AIMS: The added value of advanced practitioner nurse (APN) care after ablation of atrial fibrillation (AF) is unknown. The present study investigates the impact of APN-led care on AF recurrence, patient knowledge, lifestyle, and patient satisfaction. METHODS AND RESULTS: Sixty-five patients undergoing AF ablation were prospectively randomized to usual care (N = 33) or intervention (N = 32) group. In addition to usual care, the intervention consisted of an educational session, three consultations spread over 6 months and telephone accessibility coordinated by the APN. Primary outcome was the AF recurrence rate at 6-month follow-up. Secondary outcomes were lifestyle factors (alcohol intake, exercise, BMI, smoking), patient satisfaction and AF knowledge measured at 1 and 6 months between groups and within each group. Study demographics at 1 month were similar, except AF knowledge was higher in the intervention group (8.6 vs. 7, P = 0.001). At 6 months, AF recurrence was significantly lower in the intervention group (13.5 vs. 39.4%, P = 0.014). Between groups, patient satisfaction and AF knowledge were significantly higher in the intervention group, respectively, 9.4 vs. 8.7 (P < 0.001) and 8.6 vs. 7.0 out of 10 (P < 0.001). Within the intervention group, alcohol intake decreased from 3.9 to 2.6 units per week (P = 0.031) and physical activity increased from 224.4 ± 210.7 to 283.8 ± 169.3 (P = 0.048). No changes occurred within the usual care group. Assignment to the intervention group was the only protective factor for AF recurrence [Exp(B) 0.299, P = 0.04] in multivariable-adjusted analysis. CONCLUSION: Adding APN-led care after ablation of AF improves short-term clinical outcome, patient satisfaction and physical activity and decreases alcohol intake.

The present study investigates the added value of advanced practitioner nurse (APN)-led care consisting of an educational session, three consultations spread over 6 months and telephone accessibility coordinated by the APN in patients after ablation of atrial fibrillation (AF). Main findings are The addition of nurse-led care after ablation of AF improves short-term clinical outcome, patient satisfaction and physical activity and decreases alcohol intake.Our study shows that integrating nurse-led care in the post-AF ablation setting is a relatively simple to implement, low-cost intervention with a major impact on patient outcomes and quality of care. These findings encourage including nurse-led care into routine AF ablation follow-up.

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.

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.

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.

Beliefs about medication after hospital discharge in geriatric patients with polypharmacy.

OBJECTIVES: To describe beliefs about medication in geriatric patients with polypharmacy post-discharge and to evaluate the impact of discharge management on patients' medication beliefs. METHODS: A cross-sectional study was conducted between November 2019 and March 2020 in twelve general hospitals in Belgium. Four hundred geriatric patients with polypharmacy were surveyed at hospital discharge and two to five days post-discharge using the Beliefs about Medicines Questionnaire and self-developed questionnaires. RESULTS: According to participants, the benefits of medication outweighed the disadvantages as the mean necessity score (19.4/25) outweighed the mean concern score (11.9/25). Patients receiving help with medication management post-discharge had stronger necessity-, concern- and overuse-related beliefs. No patient- or discharge management-related factors were significant predictors of medication beliefs. CONCLUSIONS: Assessing patients' medication beliefs and identifying and addressing patients' concerns, can be an opportunity to improve medication use, to prevent non-adherence and to enhance safe medication practices at home.

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.