Social independence of adult congenital heart disease patients in Japan

Ochiai, Ryota; Ikeda, Yukitaka; Kato, Hitoshi; Shiraishi, Isao

doi:10.1111/ped.13260

Cited by 8 publications

(3 citation statements)

References 9 publications

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“…Of those who were employed, less than half (48%) were working full time. Many subjects in this study pointed out the need for understanding in the workplace, as well as employment and financial support 40 . It was also reported that employment, quality of life, and patient satisfaction are related in patients with congenital heart disease 41 .…”

Section: Transition From Pediatric To Adult Social and Welfare Servicesmentioning

confidence: 71%

“…Many subjects in this study pointed out the need for understanding in the workplace, as well as employment and financial support. 40 It was also reported that employment, quality of life, and patient satisfaction are related in patients with congenital heart disease. 41 From these results, it is ideal for ACHD patients to be able to fully reach their potential, contribute to society, and secure an income.…”

Section: Transfer Of the Patientsmentioning

confidence: 98%

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Transition in cardiology 1: Pediatric patients with congenital heart disease to adulthood

Yamamura¹,

Nagata²,

Sakamoto

et al. 2022

Pediatrics International

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With advances in medical care, the majority of infants and children with chronic diseases are now able to reach adulthood. However, many of them still need special health care because of their original diseases, sequelae, and complications. The transition from the child health care system to the adult health care system is a crucial step for these patients. The goal of transitional care is to maximize the lifelong function and potential of these patients by uninterruptedly providing appropriate health‐care services. To achieve this goal, we should (i) coordinate the transfer to adequate medical institutions and departments for adults, (ii) educate patients to improve self‐management, and (iii) support the transition to social and welfare services for adults. Transitional care in pediatric cardiology has been a step ahead of such care in other diseases because of the relatively high incidence and the long history of adult congenital heart disease. Education of the patients to establish autonomy reduces dropping out and unexpected hospitalizations and it is the most important part of transitional care. To achieve this goal, we should provide explanations to pediatric patients according to their age and level of understanding from their first visit, rather than waiting until they reach a certain age. Tools for education and readiness checks are also being developed. To achieve a situation in which pediatric patients with chronic disease can take care of their own health and fully utilize their abilities at the growing step, transitional care plays a crucial role not only in pediatric cardiology but also in other subspecialties.

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Section: Transition From Pediatric To Adult Social and Welfare Servicesmentioning

confidence: 71%

Section: Transfer Of the Patientsmentioning

confidence: 98%

Transition in cardiology 1: Pediatric patients with congenital heart disease to adulthood

Yamamura¹,

Nagata²,

Sakamoto

et al. 2022

Pediatrics International

View full text Add to dashboard Cite

show abstract

“…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. [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).…”

mentioning

confidence: 99%

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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Parental readiness for the transition to adulthood of children with a chronic disease

Ozawa¹,

Shibayama²,

Hiraga³

et al. 2023

Journal of Pediatric Nursing

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Social independence of adult congenital heart disease patients in Japan

Abstract: Because financial issues can adversely affect the psychological profiles of adult CHD patients, enhancement of social welfare and employment support may improve their social independence.

Cited by 8 publications

References 9 publications

Transition in cardiology 1: Pediatric patients with congenital heart disease to adulthood

Transition in cardiology 1: Pediatric patients with congenital heart disease to adulthood

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

Parental readiness for the transition to adulthood of children with a chronic disease

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