Why do children with severe bronchopulmonary dysplasia not attend neonatal follow‐up care? Parental views of barriers

Brady, Jennifer M.; Pouppirt, Nicole; Bernbaum, Judy; D’Agostino, Jo Ann; Gerdes, Marsha; Hoffman, Casey; Cook, Noah; Hurt, Hallam; Kirpalani, Haresh; DeMauro, Sara B.

doi:10.1111/apa.14265

Cited by 15 publications

(10 citation statements)

References 18 publications

(23 reference statements)

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“…[13][14][15] Similar factors have been identified as barriers to outpatient care in studies of children with asthma and both healthy and high-risk newborns. [16][17][18] Another recent study showed that children with specialized health care needs who were disproportionately affected by socioeconomic burdens were less likely to receive adequate access to care coordination, often worsening financial struggles already experienced by these families. 19 However, our study did not find that completing recommended follow-up among children with CCCs varied according to patient social or demographic characteristics, including patient age, sex, race/ethnicity, family receipt of social services, or distance from the hospital.…”

Section: Discussionmentioning

confidence: 99%

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Brown

Quaile

Morris

et al. 2021

Clin Pediatr (Phila)

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Objective To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. Methods We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children’s hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. Results Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission ( P = .020) and prolonged length of stay ( P = .004) were associated with decreased likelihood of completing recommended follow-up. Conclusions Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.

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Section: Discussionmentioning

confidence: 99%

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Brown

Quaile

Morris

et al. 2021

Clin Pediatr (Phila)

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“…19,27,28 As many as 10% of families who are lost to follow-up do not understand the need for early developmental intervention programs. 19…”

Section: Discussionmentioning

confidence: 99%

“…25,26 Beyond missed opportunities for EI referrals, other studies have identified parental perceptions about neonatal follow-up programs as a key component to successful provision of comprehensive postdischarge care. 19,27,28 As many as 10% of families who are lost to follow-up do not understand the need for early developmental intervention programs. 19 Both neonatal care teams and primary care physicians are responsible for educating parents about the importance and benefits of comprehensive multidisciplinary developmental follow-up for high-risk infants.…”

Section: Discussionmentioning

confidence: 99%

“…19,27,28 As many as 10% of families who are lost to follow-up do not understand the need for early developmental intervention programs. 19 Both neonatal care teams and primary care physicians are responsible for educating parents about the importance and benefits of comprehensive multidisciplinary developmental follow-up for high-risk infants.…”

Section: Discussionmentioning

confidence: 99%

“…This study is a secondary analysis of an observational prospective case series of 50 infants with sBPD at 1 quaternary (Children's Hospital of Philadelphia [CHOP]) and 2 tertiary (Hospital of the University of Pennsylvania and Pennsylvania Hospital) neonatal intensive care units (NICUs) in Philadelphia, Pennsylvania. Subjects were recruited between March 2014 and February 2015 as described by Brady et al 19 The primary study objective was to assess barriers to neonatal follow-up services among infants with sBPD. The study was approved by the institutional review board at CHOP, and a parent provided consent for each child's participation.…”

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Timing of Referral to Early Intervention Services in Infants With Severe Bronchopulmonary Dysplasia

Martin

Brady

Wade

et al. 2019

Clin Pediatr (Phila)

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This study is a secondary analysis of an observational prospective case series of 50 infants with severe bronchopulmonary dysplasia that describes patient factors associated with the time between initial hospital discharge and referral to early intervention (EI) services. It also evaluates associations between (1) timing of EI referral and reception of EI services and (2) early referral to EI and developmental outcomes at 18 to 36 months corrected age. The results demonstrated that a referral from a neonatologist versus a pediatrician was associated with fewer days between discharge and EI referral. Earlier EI referrals were associated with a shorter time to intake evaluation and service initiation. The Bayley-III (Bayley Scales of Infant and Toddler Development, 3rd Edition) scores at 24 months corrected age (n = 28) were not associated with timing of EI referral. In conclusion, an early referral to EI promoted earlier evaluation and initiation of EI services and should be standard for high-risk infants.

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Racial/Ethnic and Insurance Status Disparities in Distance Traveled to Access Children’s Hospital Care for Severe Illness: the Case of Children with Leukodystrophies

Grineski

Morales

Collins

et al. 2020

J. Racial and Ethnic Health Disparities

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Families of children with special health care needs may travel substantial distances to access specialized healthcare. However, it is not known how race/ethnicity, insurance status, and access to disease-specific specialty care affect travel distances. This analysis examines patients aged 18 years or younger who were discharged from a Pediatric Health Information System (PHIS) children's hospital (n=52) with a diagnosis of an inherited leukodystrophy between October 1, 2015 through September 30, 2018 (n=950 patients). Leukodystrophies are rare but very serious neurological illnesses, with elevated mortality and morbidity rates. Bivariate and hierarchical generalized linear models reveal that white children, privately-insured children, and children visiting leukodystrophy specialist centers travel farther for children's hospital care. These findings indicate that socially privileged families travel greater distances to obtain specialized health care, which could affect clinical outcomes.Terms of use and reuse: academic research for non-commercial purposes, see here for full terms. http://www.springer.com/gb/openaccess/authors-rights/aam-terms-v1 *

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Why do children with severe bronchopulmonary dysplasia not attend neonatal follow‐up care? Parental views of barriers

Cited by 15 publications

References 18 publications

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Timing of Referral to Early Intervention Services in Infants With Severe Bronchopulmonary Dysplasia

Racial/Ethnic and Insurance Status Disparities in Distance Traveled to Access Children’s Hospital Care for Severe Illness: the Case of Children with Leukodystrophies

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