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.

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.

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.

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.

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.

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.

Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac Society of Australia and New Zealand (CSANZ), the International Society for Adult Congenital Heart Disease (ISACHD), the World Heart Federation (WHF), the European Congenital Heart Disease Organisation (ECHDO), and the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH).

The vast majority of children with congenital heart disease (CHD) in high-income countries survive into adulthood. Further, paediatric cardiac services have expanded in middle-income countries. Both evolutions have resulted in an increasing number of CHD survivors. Expert care across the life span is necessitated. In adolescence, patients transition from being a dependent child to an independent adult. They are also advised to transfer from paediatrics to adult care. There is no universal consensus regarding how transitional care should be provided and how the transfer should be organized. This is even more challenging in countries with low resources. This consensus document describes issues and practices of transition and transfer of adolescents with CHD, accounting for different possibilities in high-, middle-, and low-income countries. Transitional care ought to be provided to all adolescents with CHD, taking into consideration the available resources. When reaching adulthood, patients ought to be transferred to adult care facilities/providers capable of managing their needs, and systems have to be in place to make sure that continuity of high-quality care is ensured after leaving paediatric cardiology.

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.

Diabetes-specific friend support in emerging adults with type 1 diabetes: Does satisfaction with support matter?

Youth with type 1 diabetes (T1D) must adhere to a complex treatment regimen to prevent health complications. Friends may provide diabetes-specific support to help youth manage diabetes, but evidence on whether youth benefit from diabetes-specific friend support is inconclusive. The present study first investigated whether satisfaction with friend support was linked to psychological distress and diabetes management. Second, it was investigated whether self-esteem mediated these relations. To this end, 324 Dutch-speaking emerging adults (17-28 years) with T1D completed questionnaires on diabetes-specific friend support, self-esteem, diabetes-specific distress, depressive symptoms, and self-care. HbA1c values were obtained from patients' physicians. Receiving diabetes-specific support from friends was associated with more diabetes-specific distress, but not for youth who were satisfied with the received support. Diabetes-specific friend support was not associated with other outcomes. Self-esteem did not mediate these relations. These results suggest that associations between diabetes-specific friend support and diabetes management are limited and that support satisfaction should be taken into consideration when examining the role of friend support for youth with T1D.

Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components.

BACKGROUND: A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as "lost to follow-up", "lapses in care" and "care gaps", are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC's; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions. METHODS: A systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey. RESULTS: In total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: "No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care"; Gap in follow-up care: "Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care"; and Untraceability: "Failure to make contact due to lack of contact information". CONCLUSION: By creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs.

Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC Working Group of Adult Congenital Heart Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD).

Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.

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.

A Person-Centered Perspective on the Role of Peer Support and Extreme Peer Orientation in Youth with Type 1 Diabetes: A Longitudinal Study.

BACKGROUND: Despite clear evidence that peers are crucial for youth development, research on the role of peers for youth with Type 1 diabetes (T1D) is scarce. PURPOSE: The present study identified trajectory classes of perceived peer functioning in youth with T1D, based on peer support and extreme peer orientation (EPO). Further, classes were compared with respect to their trajectories of depressive symptoms, diabetes-specific distress, treatment adherence, and HbA1c values. METHODS: Five hundred and fifty-nine youth (14-25 years) with T1D completed questionnaires at baseline, 1, 2, and 3 years later. Latent class growth analysis identified classes of perceived peer functioning. Multigroup latent growth curve modelling assessed whether these classes were characterized by different trajectories of general and diabetes-specific functioning. RESULTS: A socially normative class (48%) was characterized by trajectories of high support and low EPO over time. A socially reserved class (29%) was characterized by low support and EPO, and a socially oriented class (17%) by high support and EPO. Finally, a socially vulnerable class (6%) was characterized by low support and high EPO. The normative class functioned significantly better over time than the other classes. The vulnerable class functioned significantly worse compared to the reserved class, despite experiencing equally low levels of support. CONCLUSIONS: The results underscore the need to take youths' orientation toward the peer context into account alongside support when tapping into the role of peers, because individuals with low levels of support and EPO functioned substantially better than individuals with similar low levels of support but high levels of EPO.

Development of a transition program for adolescents with congenital heart disease.

Thanks to advances in care, most children with congenital heart disease nowadays survive into adulthood. The majority of patients remain at high risk for future complications. Hence, life-long follow-up is mandatory. Care needs of patients evolve, especially when reaching adulthood. A structured transition period to adult care is advocated. Currently, a fully detailed and structured transition program is not available for patients with congenital heart disease. The aim is to describe the development and design of a multicomponent transition program for adolescents with congenital heart disease, called "Transition with a heart." Transition with a heart was developed based on the Dutch program "On your own feet," starting at the age of 12 years and continuing after transfer. The most vital core components include a general and individualized flowchart, adolescent-centered communication, a joined transfer consultation, and an appointed transition coordinator. Adolescents are gradually informed about their condition and potential late consequences in adult life and stimulated to take medical care in their own hands.Conclusion: Transition with a heart is a practical, multicomponent, comprehensive transition program developed to cover the essential aspects of transitional care for adolescents with congenital heart disease (i.e., continuity of care, disease knowledge, and self-management skills). Interventions were selected from the highest sources of scientific evidence currently available.Clinical trial registration: Not applicableWhat is Known:• Transition towards adult life and health care is a complex process, requiring careful patients' guidance. Various task forces have described the need and potential benefits of transition programs in young people with chronic conditions. Details about the practical development and content of such programs in congenital heart disease are, however, currently lacking.What is New:• This method paper presents the development and design of a person-centered multicomponent transition program for adolescents with congenital heart disease comprising interventional components covering the most important aspects of transitional care: promoting autonomy, disease knowledge, and continuity of care.

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.

Leadership in Nursing Excellence: The Magnet Recognition® Journey Experiences in Europe.

Improving work conditions and the provision of high-quality care and patient safety is an issue in European hospitals. Inspired by a US program for nursing excellence, Magnet Recognition, a Belgian hospital shared their experiences by organizing a summer school in 2019 with nurses of 21 hospitals from 9 countries. This article explains the hospital's research program, the link between the journey and the content of the summer school, lessons learned, and the extent to which participants of European hospitals were interested in nursing excellence and Magnet designation.

The Social Context and Illness Identity in Youth with Type 1 Diabetes: A Three-Wave Longitudinal Study.

Youth with type 1 diabetes are confronted with the challenging task of integrating diabetes into their identity. This integration process, referred to as illness identity, may play an important role in how youth with type 1 diabetes cope with normative and illness-specific challenges. In line with socio-ecological theorizing, the present study investigated the longitudinal interplay between illness identity and two important social contexts for youth, the parent and peer contexts. A total of 559 (54.5% female; mean age = 18.8 years) adolescents (14-17 years) and emerging adults (18-25 years) with type 1 diabetes completed questionnaires at three time-points with intervals of one year. A total of 98% of these participants had the Belgian nationality, and all of them spoke Dutch. At each time point, illness identity (i.e., acceptance, enrichment, rejection, and engulfment), peer support, extreme peer orientation, parental responsiveness, parental psychological control, and parental overprotection were self-assessed. The present findings show that overprotective parenting may lead to youth feeling engulfed by their diabetes. Further, when type 1 diabetes becomes adaptively integrated into youth's identity, the data suggest that youth may be better prepared to engage in healthy peer relationships. Thus, the present findings show that illness identity may be affected by the social context, and in turn may have an impact on parent and peer relationships as well. In general, the present findings underscore the importance of adaptive illness integration for youth with type 1 diabetes, and further emphasize the importance of achieving a coherent identity.

Adherence, knowledge, and perception about oral anticoagulants in patients with atrial fibrillation at high risk for thromboembolic events after radiofrequency ablation.

AIMS: This study aimed to: (a) determine adherence rates to oral anticoagulants in atrial fibrillation patients with a high risk for thromboembolic events postradiofrequency ablation; (b) evaluate patients' knowledge and perceptions towards oral anticoagulants; and (c) explore the impact of patients' knowledge and perceptions on treatment adherence. BACKGROUND: Atrial fibrillation is a common arrhythmia associated with an increased risk of developing thromboembolic events such as stroke. Although adherence to oral anticoagulants is crucial to prevent such complications, the relationship between adherence, knowledge and patient perceptions is poorly understood in patients with atrial fibrillation at high risk for thromboembolic events after radiofrequency ablation. DESIGN: A cross-sectional observational survey study was performed in a single centre. METHODS: The levels of adherence, knowledge, and perception towards oral anticoagulants were assessed using the 8-item Morisky Medication Adherence Scale, Knowledge of Oral Anticoagulation Tool, Perception of Anticoagulant Treatment Questionnaire and Benefit-Risk Perception Tool, respectively. Results from these self-reported tools were analysed descriptively. A multivariable binary logistic regression model was used to identify factors associated with levels of adequate adherence. RESULTS: Adequate treatment adherence was found in three-quarters of patients. The total mean knowledge score was low. Participants expressed high ease of use and low burden of treatment. Higher total knowledge and satisfaction scores were significant factors associated with higher levels of adherence. CONCLUSION: There remains a huge unmet need to follow-up and educate patients with atrial fibrillation, focusing on good knowledge and correct perception of the advantages and disadvantages of oral anticoagulants. Our results suggest that increased knowledge and satisfaction rates might have a positive impact on adherence to oral anticoagulants.

Illness Identity in Adults with a Chronic Illness.

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.