Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019
Background Disabilities have implications for health, well‐being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among the 2016–20...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-11-01
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| Series: | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| Subjects: | |
| Online Access: | https://www.ahajournals.org/doi/10.1161/JAHA.121.022440 |
| _version_ | 1797884448247644160 |
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| author | Karrie F. Downing Matthew E. Oster Scott E. Klewer Charles E. Rose Wendy N. Nembhard Jennifer G. Andrews Sherry L. Farr |
| author_facet | Karrie F. Downing Matthew E. Oster Scott E. Klewer Charles E. Rose Wendy N. Nembhard Jennifer G. Andrews Sherry L. Farr |
| author_sort | Karrie F. Downing |
| collection | DOAJ |
| description | Background Disabilities have implications for health, well‐being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among the 2016–2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being) population‐based sample of 19‐ to 38‐year‐olds with CHD from 3 US locations. Methods and Results Prevalence of disability types (hearing, vision, cognition, mobility, self‐care, living independently) were compared with similarly aged adults from the general population as estimated by the American Community Survey and standardized to the CH STRONG eligible population to reduce nonresponse bias and confounding. Health‐related quality of life (HRQOL) was measured via Patient‐Reported Outcomes Measurement Information System Global Health Scale T‐scores standardized to US 18‐ to 34‐year‐olds. Separate multivariable regression models assessed associations between disability and HRQOL. Of 1478 participants, 40% reported disabilities, with cognition most prevalent (29%). Of those reporting disability, 45% ever received disability benefits and 46% were unemployed. Prevalence of disability types were 5 to 8 times higher in adults with CHD than the general population. Those with ≥1 disability had greater odds of being female, and of having non‐Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies. On average, adults with CHD and cognition, mobility, and self‐care disabilities had impaired mental HRQOL and those with any disability type had impaired physical HRQOL. Conclusions Two of 5 adults with CHD may have disabilities, which are associated with impaired HRQOL. These results may inform healthcare needs and services for this growing population. |
| first_indexed | 2024-04-10T04:06:45Z |
| format | Article |
| id | doaj.art-f95b0e4ac3dc4ff08cae4eb11cfe82dd |
| institution | Directory Open Access Journal |
| issn | 2047-9980 |
| language | English |
| last_indexed | 2024-04-10T04:06:45Z |
| publishDate | 2021-11-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| spelling | doaj.art-f95b0e4ac3dc4ff08cae4eb11cfe82dd2023-03-13T05:24:49ZengWileyJournal of the American Heart Association: Cardiovascular and Cerebrovascular Disease2047-99802021-11-01102110.1161/JAHA.121.022440Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019Karrie F. Downing0Matthew E. Oster1Scott E. Klewer2Charles E. Rose3Wendy N. Nembhard4Jennifer G. Andrews5Sherry L. Farr6National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta GANational Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta GADepartment of Pediatrics University of Arizona Tucson AZNational Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta GADepartment of Epidemiology Fay W Boozman College of Public Health and the Arkansas Center for Birth Defects Research and Prevention University of Arkansas for Medical Sciences Little Rock ARDepartment of Pediatrics University of Arizona Tucson AZNational Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Atlanta GABackground Disabilities have implications for health, well‐being, and health care, yet limited information is available on the percentage of adults with congenital heart defects (CHD) living with disabilities. We evaluated the prevalence of disability and associated characteristics among the 2016–2019 CH STRONG (Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being) population‐based sample of 19‐ to 38‐year‐olds with CHD from 3 US locations. Methods and Results Prevalence of disability types (hearing, vision, cognition, mobility, self‐care, living independently) were compared with similarly aged adults from the general population as estimated by the American Community Survey and standardized to the CH STRONG eligible population to reduce nonresponse bias and confounding. Health‐related quality of life (HRQOL) was measured via Patient‐Reported Outcomes Measurement Information System Global Health Scale T‐scores standardized to US 18‐ to 34‐year‐olds. Separate multivariable regression models assessed associations between disability and HRQOL. Of 1478 participants, 40% reported disabilities, with cognition most prevalent (29%). Of those reporting disability, 45% ever received disability benefits and 46% were unemployed. Prevalence of disability types were 5 to 8 times higher in adults with CHD than the general population. Those with ≥1 disability had greater odds of being female, and of having non‐Hispanic Black maternal race and ethnicity, severe CHD, recent cardiac care, and noncardiac congenital anomalies. On average, adults with CHD and cognition, mobility, and self‐care disabilities had impaired mental HRQOL and those with any disability type had impaired physical HRQOL. Conclusions Two of 5 adults with CHD may have disabilities, which are associated with impaired HRQOL. These results may inform healthcare needs and services for this growing population.https://www.ahajournals.org/doi/10.1161/JAHA.121.022440adultcongenital heart defectdisabilityhealth‐related quality of life |
| spellingShingle | Karrie F. Downing Matthew E. Oster Scott E. Klewer Charles E. Rose Wendy N. Nembhard Jennifer G. Andrews Sherry L. Farr Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease adult congenital heart defect disability health‐related quality of life |
| title | Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 |
| title_full | Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 |
| title_fullStr | Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 |
| title_full_unstemmed | Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 |
| title_short | Disability Among Young Adults With Congenital Heart Defects: Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being 2016–2019 |
| title_sort | disability among young adults with congenital heart defects congenital heart survey to recognize outcomes needs and well being 2016 2019 |
| topic | adult congenital heart defect disability health‐related quality of life |
| url | https://www.ahajournals.org/doi/10.1161/JAHA.121.022440 |
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