Eva Goossens

Research Foundation Flanders | FWO

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 p...

Background Although many adults with congenital heart disease (CHD) still die prematurely, end-of-life care for these patients receives limited attention. There are indications that current care provision at the end of life is burdensome, expensive, and not in line with patients' needs and preferences. We sought to analyse end-of-life care in adult...

Introduction and aims The transition towards adult-focused healthcare comprises a complex process through which adolescents with congenital heart disease (CHD) should be carefully guided. Various task forces encourage implementing person-tailored transition programs, but detailed data on adolescents' preferences regarding disease-related informatio...

Background and 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...

The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40–59 years and 18–39 years. Adjusted for demogr...

Funding Acknowledgements Type of funding sources: Foundation. Main funding source(s): Research Foundation Flanders (to PM, EG, and LVB) European Society of Cardiology (Nursing Training Grant to LVB) Background Heart failure (HF) is a common cause of morbidity and mortality in patients with congenital heart disease (CHD). Although limited in scope,...

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...

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...

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 unnotice...

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 sch...

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 healthcar...

In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated. Objective This qualitative...

AimTo scrutinize the economic impact of different care levels, such as shared care, in the follow-up of adult congenital heart disease (ACHD) patients.Methods The BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC) was analyzed. Patients (N = 6579) were categorized into five care levels based on their car...

Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): This work was supported by Research Foundation Flanders [grant numbers G097516N to PM, 12E9816N to EG and 1154719N to LVB]; the King Baudouin Foundation (Fund Joseph Oscar Waldmann-Berteau & Fund Walckiers Van Dessel); the National Foun...

Although systematic reviews are the method of choice to synthesize scientific evidence, they can take years to complete and publish. Clinicians, managers, and policy-makers often need input from scientific evidence in a more timely and resource-efficient manner. For this purpose, rapid reviews are conducted. Rapid reviews are performed using an acc...

Background: Influenza vaccination is the most commonly recommended immune prevention strategy. However, data on influenza vaccination in patients with congenital heart disease (CHD) is scarce. In this study, our goals were to (i) measure vaccination coverage rates (VCR) for influenza in a large cohort of children, adolescents and adults with CHD,...

Aims Life-long follow-up is vital for patients with congenital heart disease (CHD) to safeguard longevity. Missing scheduled appointments might be prodromal to subsequent care gaps, but our understanding of their occurrence and impact is limited. This study determined the occurrence and predictors of missed appointments (MA), assess its predictive...

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 s...

Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital h...

Objective: Cost-of-illness studies in Adult Congenital Heart Disease (ACHD) have mainly been limited to hospitalizations. This is the first paper to provide a comprehensive overview from a societal perspective including inpatient and outpatient medical costs, and absenteeism- and unemployment-related societal costs. Methods: A retrospective longitu...

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 planni...

Objectives Presenting the Belgian new framework for Advanced Practice Nursing (APN) – ‘Verpleegkundig Specialist [VS]’/”Infirmier de pratique avancée [IPA]” outlined in the Law of 22 April 2019, followed by a discussion of the lack of clarity, the current challenges and future opportunities. Methods The framework was analyzed by an expert in healt...

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...

Background Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researche...

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 compar...

Background Risk stratification for adults with congenital heart disease is usually based on the anatomic complexity of the patients’ defect. The 2018 American Heart Association/American College of Cardiology guidelines for the management of adults with congenital heart disease proposed a new classification scheme, combining anatomic complexity and...

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. Current...

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 inve...

Background: Providing continuous follow-up care to patients with congenital heart disease (CHD) remains a challenge in many settings. Previous studies highlight that patients with CHD experience discontinuation of follow-up care, but mainly describe a single-centre perspective, neglecting inter-institutional variations. Hospital-related factors ab...

Objectives: In selected single ventricle patients, a Glenn procedure (SV-Glenn) may be considered as definitive palliation. Either the patient is unsuited to progress to a Fontan circulation or a SV-Glenn circulation is preferred. This study aimed at describing the clinical course, and long-term mortality/morbidity of SV-Glenn patients. Methods:...

Purpose: To determine the amount, type, and evidence level of published literature on transfer and/or transition of young people with chronic conditions (CCs) and to describe the characteristics of such studies. Methods: Databases including PubMed, CINAHL, Web of Science, and Scopus were searched for publications in English, French, Spanish, Dut...

Objective: Patient-centred care (PCC) is the cornerstone for healthcare professionals (HCP) to promote high quality care for patients with cardiovascular conditions. It is defined as 'Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisi...

Background: Disease severity and functional indices are widely used for risk stratification of patients with congenital heart disease (CHD). The predictive value of these classification systems for assessing long-term mortality is unknown. We aimed to determine and compare the predictive value of disease severity and functional indices for 15-year...

Background:: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countr...

The developmental transition from childhood to adulthood is a complex process in the life of every youngster. This developmental process appears to be, however, more challenging and complex for children who are born with a congenital heart disease (CHD), because they not only have to deal with dynamics, changes, and difficulties characterizing adol...

The population of adults with congenital heart disease (CHD) is rapidly growing as extensive improvements in congenital cardiology and heart surgery have created new groups of children surviving into adolescence and adulthood. With improvement of clinical outcomes, involvement of nurses in research and quality initiatives has expanded over the past...

This book provides the theoretical and practical basis of technical nursing in congenital heart disease; it is intended for nurses and nursing students, and for anyone involved in the treatment of these patients. The improvements in diagnosis and management of patients with congenital heart disease (CHD) are due to the recent advances in cardiac su...

Objective. 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). Methods. Self-report questionnaires on illness identity, psychological and physical...

Background: The long-term evolution of pulmonary vascular resistance (PVR) after ventricular septal defect (VSD) repair is unknown. This study serially evaluated resting and exercise PVR after VSD repair in childhood. Methods: Patients were enrolled from the outpatient Adult Congenital Heart Disease clinic of the University Hospitals Leuven and...

As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood [1]. Effective transfer and transition programs assure that patients with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting...

Background: To optimize healthcare use of adults with congenital heart disease, all important predictors of healthcare utilization should be identified. Clinical and psychological characteristics (eg, age and depression) have been found to be associated with healthcare use. However, the concept of illness identity, which assesses the degree to whi...

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....

Table S1. Univariate Analyses: Association Between Illness Identity and the Occurrence of Healthcare Encounters (Yes/No) Table S2. Univariate Analyses: Association Between Illness Identity and Amount of Healthcare Use

Objective: The increasing importance of peers in adolescence and emerging adulthood has been widely acknowledged. However, longitudinal research linking the peer context to diabetes management and outcomes is scarce. The present longitudinal study in a large sample of youths with type 1 diabetes related both positive and negative peer variables to...

Background: Life-long specialized care is of the utmost importance to safeguard longevity as well as the quality of life in children diagnosed with a chronic condition (CC). Provision of life-long care, however, infers transfers to different settings in line with person's development status. Young people with CC (10-25 years) will transfer care fr...

Lifelong specialized care is indispensable to optimize life expectancy and quality of life for a growing number of chronic conditions including congenital cardiac conditions. Provision of seamless continuous care along the patients’ life spectrum, from birth until death, is challenging. Transfers of care from pediatric, over adolescent, to adult-fo...

The prevalence of chronic health conditions in childhood has increased substantially in Western countries as a result of improved medical therapies and diagnostic tools, which resulted in better survival rates for infants with life-threatening conditions, such as congenital heart disease (CHD). Since most young people with CHD are at risk for devel...

Introduction: There is increasing evidence supporting the relationship between family support and patient outcomes. Therefore, involving families in the care of cardiovascular patients is expected to be beneficial for patients. The quality of the encounter with families highly depends on the attitudes of nurses towards the importance of families i...

Context: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps. Objective: To ascertain det...

Objective: Antonovsky coined sense of coherence (SOC) as the central concept of his salutogenic theory focusing on the origins of well-being. SOC captures the degree to which one perceives the world as comprehensible, manageable, and meaningful. Life events and resources are considered to be the building blocks of a person's SOC. However, mainly q...

Purpose. This study aimed (1) to identify different personality types in adolescents with congenital heart disease (CHD); and (2) to relate these personality types to psychosocial functioning and several domains of perceived health, both concurrently and prospectively. Hence, this study aimed to expand previous research by adopting a person-centere...

Purpose: Because life expectancy of patients with congenital heart disease (CHD) has increased substantially, assessment of patient-reported health is seen as an important component in the follow-up. Therefore, we (1) examined patient-reported health status of young people with CHD from a longitudinal perspective; (2) compared patient-reported hea...

Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and pa...

Research has consistently demonstrated that contextual support is crucial towards the psychological functioning of adolescents with chronic conditions. However, the literature has predominantly focused on parental support instead of adopting an integrated approach to parental and peer support. The present manuscript with two longitudinal studies in...

Improved surgical care during the last decades, together with advances in medical management, led to a remarkable increase in survival of patients with congenital heart disease (CHD). However, aging of the CHD population brings new challenges, and loss of follow-up of adolescents and adults with CHD is a major concern. It is crucial to optimize the...

Although different guidelines on adult congenital heart disease (ACHD) care advocate for lifetime cardiac follow-up, a critical appraisal of the guideline implementation is lacking. We investigated the implementation of the American College of Cardiology/American Heart Association 2008 guidelines for ACHD follow-up by investigating the type of heal...

Patient-reported outcomes (PROs) have been found to play a role in the development of clinical complications. Hence, it is crucial to understand why some patients do well in terms of PROs and others do not and to identify these groups of patients. Sense of coherence (SOC), capturing a person's outlook on life, is associated with PROs in adolescents...

Background: In order to prevent cardiac complications, young people with congenital heart disease (CHD) should conduct heart-healthy behaviours. Therefore, they are assumed to have a good understanding of their disease. However, empirical data on the relationship between disease-related knowledge and health behaviours in this population is lacking....

Over the past decades, survival of children born with congenital heart disease has increased significantly. This has resulted in an exponential growth in the number of adult patients, which brings challenges to the organization of adult congenital heart disease care. Since patients with congenital heart disease are prone to develop late complicatio...

The present study examined associations between parenting and perceived health in adolescents with congenital heart disease (CHD) using a longitudinal trajectory approach. Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven. A total of 429 adolescents (M age = 16 at T1) part...

Objective. The present study examined associations between parenting and perceived health in adolescents with congenital heart disease (CHD) using a longitudinal trajectory approach. Methods. Adolescents with CHD were selected from the database of pediatric and congenital cardiology of the University Hospitals Leuven. A total of 429 adolescents (Ma...

To describe (1) the content of a transition programme for young people with juvenile idiopathic arthritis (JIA) designed as a brief intervention, (2) the rationale and design of a mixed-methods study evaluating the clinical impact of this transition programme and (3) to provide baseline data of the intervention group. An 'embedded experimental' des...

Purpose: Acquiring close peer relationships is an important developmental task in adolescence. This task may be particularly demanding for adolescents with congenital heart disease (CHD), who face disease-specific challenges putting them at risk for social isolation and loneliness. This study compared cross-sectional levels of loneliness in adoles...