Social determinants of health and outcomes for children and adults with congenital heart disease: a systematic review

Davey, Brooke; Sinha, Raina; Lee, Ji Hyun; Gauthier, Marissa; Flores, Glenn

doi:10.1038/s41390-020-01196-6

Cited by 90 publications

(62 citation statements)

References 101 publications

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“…Moreover, though we did attempt to account for SES differences in our statistical analyses, the primacy of SES as a key driver of developmental outcomes must be acknowledged. Indeed, our findings are in line with substantial evidence attesting to the broad-based impact of SES on neurobehavioral and psychosocial outcomes among both typically developing and medically complex individuals (Farah, 2017), including children and adolescents with CHD (Bucholz et al, 2018;Davey et al, 2020); and, thus, SES remains an important risk factor to further examine in future studies.…”

Section: Discussionsupporting

confidence: 86%

Performance on the ROCF at 8 Years Predicts Academic Achievement at 16 Years in Individuals with Dextro-Transposition of the Great Arteries

Fasano-McCarron

Bernstein

Waber

et al. 2021

J Int Neuropsychol Soc

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Objective: This study examined longitudinal associations between performance on the Rey–Osterrieth Complex Figure–Developmental Scoring System (ROCF-DSS) at 8 years of age and academic outcomes at 16 years of age in 133 children with dextro-transposition of the great arteries (d-TGA). Method: The ROCF-DSS was administered at the age of 8 and the Wechsler Individual Achievement Test, First and Second Edition (WIAT/WIAT-II) at the ages of 8 and 16, respectively. ROCF-DSS protocols were classified by Organization (Organized/Disorganized) and Style (Part-oriented/Holistic). Two-way univariate (ROCF-DSS Organization × Style) ANCOVAs were computed with 16-year academic outcomes as the dependent variables and socioeconomic status (SES) as the covariate. Results: The Organization × Style interaction was not statistically significant. However, ROCF-DSS Organization at 8 years was significantly associated with Reading, Math, Associative, and Assembled academic skills at 16 years, with better organization predicting better academic performance. Conclusions: Performance on the ROCF-DSS, a complex visual-spatial problem-solving task, in children with d-TGA can forecast academic performance in both reading and mathematics nearly a decade later. These findings may have implications for identifying risk in children with other medical and neurodevelopmental disorders affecting brain development.

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Section: Discussionsupporting

confidence: 86%

Performance on the ROCF at 8 Years Predicts Academic Achievement at 16 Years in Individuals with Dextro-Transposition of the Great Arteries

Fasano-McCarron

Bernstein

Waber

et al. 2021

J Int Neuropsychol Soc

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“…It is only in recent times, and with the growth of the ACHD population, that congenital heart disease has been recognised to be a chronic condition with different disease-based trajectories [ 21 ]. As with other chronic diseases, the trajectories are also influenced by socioeconomic circumstances [ 22 ]. The vision of the World Health Organisation for chronic conditions is that optimal care delivery is achieved through an integrated care approach centred on the patient and family, supported by the community, with expeditious utilisation of healthcare services [ 23 ].…”

Section: Discussionmentioning

confidence: 99%

Ambulatory Care in Adult Congenital Heart Disease—Time for Change?

Coats

Chaudhry

2022

JCM

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Background: The adult congenital heart disease (ACHD) population is growing in size and complexity. This study evaluates whether present ambulatory care adequately detects problems and considers costs. Methods: A UK single-centre study of clinic attendances amongst 100 ACHD patients (40.4 years, median ACHD AP class 2B) between 2014 and 2019 and the COVID-19 restrictions period (March 2020–July 2021). Results: Between 2014 and 2019, there were 575 appointments. Nonattendance was 10%; 15 patients recurrently nonattended. Eighty percent of appointments resulted in no decision other than continued review. Electrocardiograms and echocardiograms were frequent, but new findings were rare (5.1%, 4.0%). Decision-making was more common with the higher ACHD AP class and symptoms. Emergency admissions (n = 40) exceeded elective (n = 25), with over half following unremarkable clinic appointments. Distance travelled to the ACHD clinic was 14.9 km (1.6–265), resulting in 433–564 workdays lost. During COVID 19, there were 127 appointments (56% in-person, 41% telephone and 5% video). Decisions were made at 37% in-person and 19% virtual consultations. Nonattendance was 3.9%; there were eight emergency admissions. Conclusion: The main purpose of the ACHD clinic is surveillance. Presently, the clinic does not sufficiently predict or prevent emergency hospital admissions and is costly to patient and provider. COVID-19 has enforced different methods for delivering care that require further evaluation.

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“…Survival at last follow-up for ACHD transplant recipients and matched non-ACHD controls hospitalization, non-adherence with follow-up appointments, and loss to follow-up. [29][30][31] These disparities are also evident in advanced heart failure: Black and Hispanic patients are sicker at the time of referral for advanced heart failure therapies, 32 worse outcomes are noted in patients of higher psychosocial risk with LVAD support, 33 and Black patients have worse outcomes when bridged with LVAD to HTx. 34 Our observations highlight the inequities in access to HTx faced by ACHD patients, who have to overcome not only the medical challenges of structural disease, but psycho/socioeconomic barriers as well.…”

Section: Discussionmentioning

confidence: 99%

“…Lower SES is associated with lower quality of life not only in the patients with congenital heart disease, but also in their caregivers and family members 28 . Patients with congenital heart disease of lower SES also have increased mortality, unplanned hospitalization, non‐adherence with follow‐up appointments, and loss to follow‐up 29–31 …”

Section: Discussionmentioning

confidence: 99%

Advanced heart failure and heart transplantation in adult congenital heart disease in the current era

Rosa

Singer-Englar

Tompkins

et al. 2021

Clinical Transplantation

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Background: Adults with congenital heart disease (ACHD) may undergo heart transplantation (HTx) despite increased risk of poor short-term outcomes due to factors including surgical complexity and antibody sensitization. We assessed the clinical characteristics and outcomes of patients with ACHD in the current era referred for HTx at a single high-volume transplant center. Methods:From 2010 to 2020, 37 ACHD patients were evaluated for HTx. ACHD HTx recipients were compared to non-ACHD HTx recipients matched for age, sex, listing status, and prior cardiac surgery.Results: Of the 37 patients with ACHD, eight (21.6%) were declined for HTx. Of 29 ACHD patients listed, 19 (65.5%) underwent HTx. Compared with non-ACHD HTx controls, the ACHD HTx recipients had more treated cellular (21.1% vs. 15.8%, P = .010) and antibody-mediated (15.8% vs. 10.5%, P = .033) rejection. There was no difference in hospital readmission or allograft vasculopathy at 1 year. There was a nonsignificant higher 1-year mortality in ACHD HTx recipients (21.1% vs. 7.9%, P = .21). Conclusion:At a high-volume transplant center, ACHD patients undergoing HTx appear to have a marginally higher risk of rejection, but no significant increase in 1year mortality. With careful selection and management, HTx for patients with ACHD may be feasible in the current era.

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Social determinants of health and outcomes for children and adults with congenital heart disease: a systematic review

Cited by 90 publications

References 101 publications

Performance on the ROCF at 8 Years Predicts Academic Achievement at 16 Years in Individuals with Dextro-Transposition of the Great Arteries

Performance on the ROCF at 8 Years Predicts Academic Achievement at 16 Years in Individuals with Dextro-Transposition of the Great Arteries

Ambulatory Care in Adult Congenital Heart Disease—Time for Change?

Advanced heart failure and heart transplantation in adult congenital heart disease in the current era

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