The impact of socio-economic status on health related quality of life for children and adolescents with heart disease

Cassedy, Amy; Drotar, Dennis; Ittenbach, Richard F.; Hottinger, S; Wray, Jo; Wernovsky, Gil; Newburger, Jane W.; Mahony, Lynn; Mussatto, Kathleen A.; Cohen, Mitchell I.; Marino, Bradley S.

doi:10.1186/1477-7525-11-99

Cited by 69 publications

(60 citation statements)

References 32 publications

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“…Recently, societal factors such as poverty, medical insurance, and maternal education have emerged as predictors of adverse outcomes in children with complex congenital heart disease (CHD) and may explain some of the difference in survival between children with similar clinical characteristics 9. Specifically, low socioeconomic status (SES) in children with SV physiology has been associated with higher early mortality6, 8 and lower quality of life10 after surgery, and other studies have found similar associations in the larger CHD population 11, 12, 13, 14, 15, 16. Nevertheless, existing studies examining SES have been limited by cross‐sectional or case–control study designs,14, 15 single center populations,7, 9, 10, 14, 15 or limited outcome assessment 6, 8.…”

Section: Introductionmentioning

confidence: 99%

Neighborhood Socioeconomic Status and Outcomes Following the Norwood Procedure: An Analysis of the Pediatric Heart Network Single Ventricle Reconstruction Trial Public Data Set

Bucholz

Sleeper

Newburger

2018

JAHA

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BackgroundChildren with single ventricle heart disease require frequent interventions and follow‐up. Low socioeconomic status (SES) may limit access to high‐quality care and place these children at risk for poor long‐term outcomes.Methods and ResultsData from the SVR (Pediatric Heart Network Single Ventricle Reconstruction Trial Public Use) data set were used to examine the relationship of US neighborhood SES with 30‐day and 1‐year mortality or cardiac transplantation and length of stay among neonates undergoing the Norwood procedure (n=525). Crude rates of death or transplantation at 1 year after Norwood were highest for patients living in neighborhoods with low SES (lowest tertile 37.0% versus middle tertile 31.0% versus highest tertile 23.6%, P=0.024). After adjustment for patient demographics, birth characteristics, and anatomy, patients in the highest SES tertile had significantly lower risk of death or transplant than patients in the lowest SES tertile (hazard ratio 0.62, 95% confidence interval, 0.40, 0.96). When SES was examined continuously, the hazard of 1‐year death or transplant decreased steadily with increasing neighborhood SES. Hazard ratios for 30‐day transplant‐free survival and 1‐year transplant‐free survival were similar in magnitude. There were no significant differences in length of stay following the Norwood procedure by SES.ConclusionsLow neighborhood SES is associated with worse 1‐year transplant‐free survival after the Norwood procedure, suggesting that socioeconomic and environmental factors may be important determinants of outcome in critical congenital heart disease. Future studies should investigate aspects of SES and environment amenable to intervention.Clinical Trial RegistrationURL:http://www.clinicaltrials.gov> http://www.clinicaltrials.gov. Unique identifier: NCT00115934.

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Section: Introductionmentioning

confidence: 99%

Neighborhood Socioeconomic Status and Outcomes Following the Norwood Procedure: An Analysis of the Pediatric Heart Network Single Ventricle Reconstruction Trial Public Data Set

Bucholz

Sleeper

Newburger

2018

JAHA

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“…[4][5][6][7][8][10][11][12] In Sweden, HF hospitalisation rates were 45% higher in individuals on low income than those on high income. [10] In the First National Health and Nutrition Examination Survey in the United States, low education was associated with high HF hospitalisation.…”

Section: Discussionmentioning

confidence: 99%

“…In a study of 1,383 patients (695 children and 688 adolescents) with heart disease from seven large paediatric cardiac centres in the United States, Cassedy et al [4] found that family income was the strongest predictor of health related quality of life for the patients. In a review, Calvillo-King et al [5] reported that low income and low education increased the risk for readmission among HF patients.…”

Section: Introductionmentioning

confidence: 99%

Variations in heart failure hospitalisation rates by socioeconomic status, Victoria, Australia

Ore¹

2015

JER

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This paper analyses variations in heart failure (HF) hospitalisation rates by community socioeconomic status (SES) in Victoria, from 1 July 2011 to 30 June 2014. The data was taken from the Victorian Admitted Episodes Dataset, the Australian Bureau of Statistics' Estimated Resident Population and Index of Relative Socioeconomic Disadvantage and the Victorian Population Health Survey. There were over 38,000 HF hospitalisations over the period. The age-standardised HF rates per 10,000 population varied inversely (r = -0.362, p<.01) with SES across 79 Local Government Areas (LGA). The coefficient of variation for HF hospitalisation rates was 0.35 and 0.14 for all admissions, indicating that HF hospitalisations have a greater variation by LGA. Communities with high HF rates also had high rates of current smokers (r = 0.24), chronic obstructive pulmonary disease (r = 0.57), renal failure (r = 0.54), diabetes (r = 0.24), musculoskeletal malignant neoplasms (r = 0.35) and Disability Support Pension recipients (r = 0.38). The average 30-day HF readmission rate was 25.5%, the second highest of all admission categories. The HF readmission rates also varied inversely (r = -0.38, p<.01) with SES. Investigating variations in HF by SES may uncover modifiable pathways. Given the high readmission rates, comorbidities and population ageing, there is a case for improving health outcomes for HF patients.

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“…Stress in terms of finances, emotional drain, and family member burden are reported in the literature [39][40][41]. Based on practical experience over greater than 20 years of nursing experience, the CHD ISSN: 2380-0534 families of today comprise a mixture of dual income households with more financial health care coverage concerns and often less extended family in close proximity.…”

Section: Conclusion Changing Population Of Chdmentioning

confidence: 99%

Lifetime Impact of Congenital Heart Disease on a Family from the Perspective of a Third in Birth Order Sibling

2016

J Paediatr Child Care

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Background: Congenital heart disease (CHD) is the number one birth defect reported by the Centers for Disease Control and Prevention [1]. Patients are surviving and thriving into teen and adult years. The evolution of care since the late 1960's for patients and families include routine and unexpected clinic visits, hospitalizations, and procedures. Transitions into acute care systems and subsequent return to chronic care systems are part of the process. This care is required in addition to normal routine health surveillance and illnesses impacting patients, families, resources, and support systems.Recognition of the healthy sibling impact and relationship with chronic health disease is present in the literature with inconsistent results across many diseases. The quality of life literature in CHD is progressing through the years, particularly for patients; however, lifetime healthy sibling impact of CHD continues to be void in the literature. Sibling relationships span the longest time period in a lifetime, typically longer than parents and spouses [2]. Focus on sibling impact of chronic illness is essential to understanding the family dynamics, sibling relationships, roles, and family coping mechanisms when faced with a life-threatening illness like CHD.Method: A Midwestern nuclear intact family is the focus in this case study. In 1968, an infant, second in birth order of 4 siblings, was postnatally diagnosed with complex univentricular CHD requiring repeat surgical and medical follow up throughout his lifetime. This single family review retrospectively spans over four and a half decades from the perspective of third in birth order sibling. Utilizing interviews and personal accounts, a developmental perspective of the impact growing up with an ill sibling throughout childhood and adulthood is reported.Results: Normal developmental milestones of adulthood were achieved by all four siblings including: graduating high school, moving out of the home, marrying, childrearing, and pursuing productive careers. Divorce was not present in the nuclear family and respective adult families. Three of the four siblings graduated with a college degree and a first for our generation.Conclusion: CHD and the acute life threatening issues associated with surgical and medical follow up impacts the family system. Compassion and empathy evolved throughout the lifespan for one sibling. Exposure to emotional, mental, and physical stressors while providing quality health care can be significant. The development of professional compassion fatigue [3] and nursing burnout in the third in birth order sibling was identified.Family resilience was critical to positively moving forward. Eight positive resilience factors were identified as key to maintain a positive focus and live life to the fullest capacity. These included: consistent positive family support, spiritual support, family financial stability, quality health care, strong work ethic, presence of humor, focus on quality of life and normalcy, and drive for adventure and new exp...

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The impact of socio-economic status on health related quality of life for children and adolescents with heart disease

Cited by 69 publications

References 32 publications

Neighborhood Socioeconomic Status and Outcomes Following the Norwood Procedure: An Analysis of the Pediatric Heart Network Single Ventricle Reconstruction Trial Public Data Set

Neighborhood Socioeconomic Status and Outcomes Following the Norwood Procedure: An Analysis of the Pediatric Heart Network Single Ventricle Reconstruction Trial Public Data Set

Variations in heart failure hospitalisation rates by socioeconomic status, Victoria, Australia

Lifetime Impact of Congenital Heart Disease on a Family from the Perspective of a Third in Birth Order Sibling

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