Philip Moons

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

AIMSnGeographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.nnnMETHODS AND RESULTSnAssessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.nnnCONCLUSIONSnThis international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.

Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES)

Purpose Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES). Methods The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III. Results The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385–0.941. A second-order model had an adequate fit to the data. Cronbach’s alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609–0.858. Conclusions GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons’ empowerment.

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation

OBJECTIVEnFirst, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL.nnnDESIGNnCross-sectional observational study.nnnSETTINGnTwenty-four cardiology centers from 15 countries across five continents.nnnPATIENTSnFour hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years.nnnOUTCOME MEASURESnQOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively.nnnRESULTSnPatients with a Fontan circulation reported lower QOL (Wald Z = -3.59, pu2009=u2009<.001) and more negative perceptions of their CHD (Wald Zu2009=u2009-7.66, pu2009<u2009.001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβu2009=u20090.15, pu2009=u2009.002, 95% CIu2009=u20090.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions.nnnCONCLUSIONSnThe Fontan samples more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

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 which congenital heart disease is integrated into ones identity, has not yet been investigated in association with healthcare use. Hence, the purpose of the study is to examine the predictive value of illness identity for healthcare use. Methods and Results In this ambispective analytical observational cohort study, 216 adults with congenital heart disease were included. The self‐reported Illness Identity Questionnaire was used to assess illness identity states: engulfment, rejection, acceptance, and enrichment. After 1 year, self‐reported healthcare use for congenital heart disease or other reasons over the past 6 months was assessed including hospitalizations; visits to general practitioner; visits to medical specialists; and emergency room visits. Binary logistic and negative binomial regression analyses were conducted, adjusting for age, sex, disease complexity, and depressive and anxious symptoms. The more profoundly the heart defect dominated ones identity (ie, engulfment), the more likely this person was to be hospitalized (odds ratio=3.76; 95% confidence interval=1.43–9.86), to visit a medical specialist (odds ratio=2.32; 95% confidence interval=1.35–4.00) or a general practitioner (odds ratio=1.78; 95% confidence interval=1.01–3.17), because of their heart defect. Conclusions Illness identity, more specifically engulfment, has a unique predictive value for the occurrence of healthcare encounters. This association deserves further investigation, in which the directionality of effects and the contribution of illness identity in terms of preventing inappropriate healthcare use should be determined.

Thirty-day readmissions in surgical and transcatheter aortic valve replacement: A systematic review and meta-analysis

BACKGROUNDnThe 30-day all-cause readmission rate after surgical aortic valve replacement (SAVR) and transcatheter aortic valve replacement (TAVR) vary substantially. We conducted a systematic review and meta-analysis to examine the overall incidence, causes, and risk factors of 30-day all-cause readmission rate after SAVR and TAVR.nnnMETHODSnEight medical research databases were searched; Cochrane, Medline, Embase, UpToDate, PROSPERO, National Guideline Clearinghouse, SweMed and Oria. We followed The Preferred Reporting Items for Systematic reviews and Meta-analysis (PRISMA) for this study.nnnRESULTSnThirty-three articles were included in the systematic review, 32 of which were appropriate for the meta-analysis. Overall, 17% (95% CI: 16-18%) of patients in the SAVR group, and 16% (95% CI: 15-18%) in the TAVR groups were readmitted within 30u202fdays. Heart failure, arrhythmia, infection, and respiratory problems were the most frequent causes of all-cause readmission after SAVR and TAVR. Most frequent reported prior risk factors for all-cause readmission following TAVR were diabetes, chronic lung disease/chronic obstructive pulmonary disease, atrial fibrillation, kidney problems, and transapical approach/nonfemoral access. For SAVR, no risk factors for 30-day all-cause readmission were reported in the literature to date.nnnCONCLUSIONnIn conclusion, the overall proportion of 30-day all-cause readmission after SAVR and TAVR are high. Interventions to prevent avoidable readmissions ought to be developed and implemented.

Advanced care planning in adult congenital heart disease: Transitioning from repair to palliation and end-of-life care

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 them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia [2]. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues.

Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe

AIMSnReligion and spirituality can be resources for internal strength and resilience, and may assist with managing lifes challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.nnnMETHODS AND RESULTSnAPPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in ones life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.nnnCONCLUSIONnReligiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.

Eating Disorder Symptomatology and Identity Formation in Adolescence: A Cross-Lagged Longitudinal Approach

Introduction: Eating disorder symptomatology, comprising both psychological and behavioral aspects of subclinical eating concerns, constitutes a clear precursor of developing eating disorders. It is crucial to investigate its antecedents and correlates to subsequently inform eating disorder prevention programs. The present study focused on identity formation, a core developmental task in adolescence, that has increasingly been linked to eating disorder development. Our main aim was to examine the temporal sequence between eating disorder symptomatology and identity formation. Methods: Data on eating disorder symptomatology and identity formation were collected in 530 high school students (at Time 1: mean age = 15 years; SD = 1.84; range: 12–18 years; 50.6% females) using self-report questionnaires at three annual measurement points. Cross-lagged structural equation modeling was performed to examine the directionality of effects. Results: Results indicated bidirectional effects between eating disorder symptomatology and identity formation. Identity confusion seemed to increase vulnerability to body dissatisfaction and bulimia symptoms, whereas identity synthesis seemed to protect against their development. Additionally, identity synthesis seemed to protect against the development of drive for thinness as well. At the same time, body dissatisfaction and bulimia symptoms positively predicted identity confusion and negatively predicted identity synthesis over time. Conclusion: The present study adds to the growing body of literature on identity and eating disorders by focusing on their temporal interplay in a community sample of adolescents. As bidirectional effects emerged, a greater emphasis on identity formation in eating disorder prevention programs is advocated.

Self-efficacy as a predictor of patient-reported outcomes in adults with congenital heart disease

Objective: Self-efficacy is a known predictor of patient-reported outcomes in individuals with acquired diseases. With an overall objective of better understanding patient-reported outcomes in adults with congenital heart disease, this study aimed to: (i) assess self-efficacy in adults with congenital heart disease, (ii) explore potential demographic and medical correlates of self-efficacy and (iii) determine whether self-efficacy explains additional variance in patient-reported outcomes above and beyond known predictors. Methods: As part of a large cross-sectional international multi-site study (APPROACH-IS), we enrolled 454 adults (median age 32 years, range: 18–81) with congenital heart disease in two tertiary care centres in Canada and Switzerland. Self-efficacy was measured using the General Self-Efficacy (GSE) scale, which produces a total score ranging from 10 to 40. Variance in the following patient-reported outcomes was assessed: perceived health status, psychological functioning, health behaviours and quality of life. Hierarchical multivariable linear regression analysis was performed. Results: Patients’ mean GSE score was 30.1 ± 3.3 (range: 10–40). Lower GSE was associated with female sex (p = 0.025), not having a job (p = 0.001) and poorer functional class (p = 0.048). GSE positively predicted health status and quality of life, and negatively predicted symptoms of anxiety and depression, with an additional explained variance up to 13.6%. No associations between self-efficacy and health behaviours were found. Conclusions: GSE adds considerably to our understanding of patient-reported outcomes in adults with congenital heart disease. Given that self-efficacy is a modifiable psychosocial factor, it may be an important focus for interventions targeting congenital heart disease patients’ well-being.

Why some people do well and others don’t. The role of sense of coherence in disease adaptation:

In 2006, the European Journal of Cardiovascular Nursing published a discussion paper entitled: ‘Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis’.1 The driver for this discussion paper was the observation that young adults with congenital heart disease reported a better quality of life than individuals from the general population.2 In the meantime, this hypothesis has been extensively investigated and confirmed.3–8 The discussion paper was also the start of a series of publications on sense of coherence in the European Journal of Cardiovascular Nursing. Sense of coherence is a construct that has been advanced and developed by Aaron Antonovsky, a medical sociologist. Sense of coherence is defined as: