Education as important predictor for successful employment in adults with congenital heart disease worldwide

Sluman, Maayke A.; Apers, Silke; Sluiter, Judith K.; Nieuwenhuijsen, Karen; Moons, Philip; Luyckx, Koen; Kovacs, Adrienne H.; Thomet, Corina; Budts, Werner; Enomoto, Junko; Yang, Hsuan-Chia; Jackson, Jamie L.; Khairy, Paul; Cook, Stephen C.; Subramanyan, Raghavan; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Mattsson, Eva; Mackie, Andrew S.; Menahem, Samuel; Caruana, Maryanne; Gosney, Kathy; Soufi, Alexandra; Fernandes, Susan M.; White, Kamila S.; Callus, Edward; Kutty, Shelby; Bouma, Berto J.; Mulder, Barbara J.M.

doi:10.1111/chd.12747

Cited by 33 publications

(21 citation statements)

References 35 publications

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“…Socio‐demographic data were collected by self‐reports and information on medical history was retrieved by chart reviews. Details on the methodology of APPROACH‐IS have been provided in a methods paper , and numerous papers have described findings obtained from this global sample or from patients from specific countries or regions .…”

Section: Approach‐ismentioning

confidence: 99%

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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Over the past four decades, the number of papers on quality of life (QoL) in congenital heart disease (CHD) has grown exponentially. However, firm conclusions have been hard to draw, because conceptual issues occurred and methodological differences prevented direct comparisons of studies. In general, QoL in CHD patients is good and it can be even better than in healthy peers when measured as life satisfaction. When QoL is measured as physical functioning, patients with complex CHD do worse than patients with moderate or mild defects or healthy individuals. APPROACH-IS was a large-scale international project that confirmed international variations in QoL, with Australian patients reporting the best QoL. Poor QoL was predicted by older age, being a job seeker, unemployed or disabled, never having married and those with worse functional status. Perceived illness and religion and spirituality were also significant predictors for QoL. On the other hand, country-specific characteristics and healthcare system factors did not play a significant role in explaining variances in QoL of patients with CHD around the globe. Future studies should rely on a sound conceptual basis, use longitudinal research designs, be conducted in international, multi-centre settings and evaluate interventions that promote patients' QoL.

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Section: Approach‐ismentioning

confidence: 99%

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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“…7,21 However, prior studies in the United States have frequently been limited by tracking employment only among adults with CHD under cardiology follow-up. 3 With loss to cardiology follow-up becoming increasingly common as adults with CHD age, alternative strategies are needed to produce population-based estimates of employment among adults with CHD, as well as factors affecting employment. Our study used a CHD registry including all encounters with a CHD diagnosis at an academic medical centre where employment status was routinely captured in the electronic medical record.…”

Section: Discussionmentioning

confidence: 99%

“…1 Due to medical and surgical advancements, most children born with CHD are now expected to live well into adulthood, with survival rates over 90%. 2,3 However, adults with CHD require lifelong subspecialty care and are at risk of requiring further surgery or developing heart failure related to their evolving heart disease. From a psychosocial standpoint, adults with CHD may lead more sedentary or cautious lifestyles compared to those without CHD and may experience hesitancy or barriers associated with pursuing education or career goals due to potential risk of becoming unwell.…”

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confidence: 99%

“…8 Adults with CHD may also experience barriers to work participation related to age, sex, comorbidities, social support, and knowledge of the disease. 2,3,[8][9][10][11] Conversely, use of private health insurance, peers' awareness and understanding of CHD and its impact in the workplace, and employer accommodations for physical restrictions can facilitate increased employment for adults with CHD. 8,[10][11][12][13][14] Currently, our knowledge of employment among adults with CHD includes data from clinical registries, single-centre retrospective reviews, and cross-sectional surveys.…”

mentioning

confidence: 99%

“…8,[10][11][12][13][14] Currently, our knowledge of employment among adults with CHD includes data from clinical registries, single-centre retrospective reviews, and cross-sectional surveys. [3][4][5][6]15 However, these studies have been limited by small sample sizes (in single-centre reviews and crosssectional surveys), a bias towards including only patients followed by a cardiology service, and lack of generalisability to United States employment and health care systems (among studies conducted using European population-based registries). While population-based surveys have been conducted in the United States to identify children with CHD, 16 equivalent nationally representative data on adults with CHD are lacking.…”

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confidence: 99%

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Clinical and socio-economic predictors of work participation in adult CHD patients

et al. 2020

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Abstract Background: Adults with CHD have reduced work participation rates compared to adults without CHD. We aimed to quantify employment rate among adult CHD patients in a population-based registry and to describe factors and barriers associated with work participation. Methods: We retrospectively identified adults with employment information in the North Carolina Congenital Heart Defects Surveillance Network. Employment was defined as any paid work in a given year. Logistic regression was used to examine patients’ employment status during each year. Results: The registry included 1,208 adult CHD patients with a health care encounter between 2009 and 2013, of whom 1,078 had ≥1 year of data with known employment status. Overall, 401 patients (37%) were employed in their most recent registry year. On multivariable analysis, the odds of employment decreased with older age and were lower for Black as compared to White patients (odds ratio = 0.78; 95% confidence interval: 0.62, 0.98; p = 0.030), and single as compared to married patients (odds ratio = 0.50; 95% confidence interval: 0.39, 0.63; p < 0.001). Conclusion: In a registry where employment status was routinely captured, only 37% of adult CHD patients aged 18–64 years were employed, with older patients, Black patients, and single patients being less likely to be employed. Further work is needed to consider how enhancing cardiology follow-up for adults with CHD can integrate support for employment.

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Relationship between achieving Sustainable Development Goals and promoting optimal care and prevention of birth defects globally

Kancherla

Roos

Walani³

2022

Birth Defects Research

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Birth defects affect eight million newborns annually worldwide. About 8% of global under‐5 mortality is attributable to birth defects. The United Nations (UN) Sustainable Development Goals (SDGs) have set 17 global goals for human growth and development to be achieved by 2030 using multi‐sectorial approaches. The third goal (SDG‐3) focuses on ensuring healthy lives and promoting well‐being; achieving SDG‐3 improves birth defects care and prevention. However, we aimed to show how achieving other SDGs also influence optimal care and prevention of birth defects. SDGs focused on poverty reduction, access to nutritious food, universal health coverage, equitable education, gender equality, environment, inclusivity through infrastructure innovation, and strengthening social justice is crucial to addressing social determinants of health for individuals and families affected by birth defects. Understanding birth defects in the context of several relevant SDGs will allow practitioners, researchers, and policymakers to leverage the momentum generated by SDGs and make a case for commitment and allocation of funding and resources for advancing birth defects surveillance, care, and prevention. SDGs are built on principles of equity and social justice and we urge policy‐makers to approach birth defects using various SDGs as a catalyst. The synergy between several SDGs helps to optimize birth defect outcomes and prevention. Our effort to present a more comprehensive look at various SDGs and their relationship with birth defects is parallel to several other health advocacy groups conducting a similar mapping exercise, thus bringing to the forefront millions of lives that are impacted by birth defects worldwide.

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Education as important predictor for successful employment in adults with congenital heart disease worldwide

Cited by 33 publications

References 35 publications

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Clinical and socio-economic predictors of work participation in adult CHD patients

Relationship between achieving Sustainable Development Goals and promoting optimal care and prevention of birth defects globally

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