Parent-Reported Quality of Preventive Care for Children At-Risk for Developmental Delay

doi:10.1016/j.acap.2012.05.003

Academic Pediatrics

Volume 12, Issue 5, September–October 2012, Pages 384-390

https://doi.org/10.1016/j.acap.2012.05.003 Get rights and content

Abstract

Objective

To compare preventive care quality for children at risk and not at risk for developmental, behavioral, or social delays.

Methods

Using the 2007 National Survey of Children’s Health (n = 22,269), we used the Parents’ Evaluation of Developmental Status (PEDS) questionnaire to identify children ages 10 months to 5 years who were at risk for delays. We examined parent-reported quality measures to evaluate whether care was comprehensive, coordinated, family-centered, effective in providing developmental surveillance and screening, and provided within a medical home. Bivariate and multivariate analyses were used.

Results

Twenty-eight percent of children were at-risk for delay, with 17% at moderate risk and 11% at high risk. Greater proportions of children at high, moderate, and no/low risk had a usual source of care (89%–96%) and a personal doctor/nurse (91%–94%); smaller proportions of children underwent a standardized developmental screening (16%–23%) and had parental developmental concerns elicited from their doctor (47%–48%). In adjusted analyses, moderate-risk and high-risk children were less likely than no/low-risk children to receive needed care coordination (adjusted odds ratio [AOR] for high risk 0.33, 95% confidence interval [95% CI] 0.24–0.46) and referrals (high risk AOR 0.40, 95% CI 0.25–0.65), family-centered care (high-risk AOR 0.47, 95% CI 0.36–0.62), and to have a medical home (high-risk AOR 0.41, 95% CI 0.32–0.54).

Conclusions

Our findings may reflect either poorer quality of care provided to at-risk children, or higher level of parental need that routine visits are not currently meeting. For at-risk children, enhanced screening and detection followed by targeted increases in communication and follow-up may help clinicians better anticipate families’ needs.

Introduction

Preventive care visits during the first 5 years of a child’s life are critical. These visits may be the only opportunity to identify and address important developmental, behavioral, and social (henceforth referred to as simply developmental) delays before a child enters school. Poor quality of preventive care may hinder early identification of children at-risk for developmental delays (DD). At-risk children should be identified through surveillance and standardized screening at preventive visits and receive appropriate and timely intervention.1, 2, 3, 4, 5

The quality of preventive care provided to U.S. children suffers various deficiencies in its structures (eg, organization, personnel) and processes (eg, provision of care, receipt of care). For example, just one-half of parents nationwide report that their doctors ask about their developmental concerns, and less than one-fifth of children receive a standardized screening for DD.6, 7 One-third of children do not receive care that is family-centered at visits—parents report that doctors don’t spend enough time, listen carefully, or provide them with needed information during visits.⁸ More than 40% of children do not receive comprehensive and coordinated care through a medical home.⁸ These key elements of quality are important for all children and may be critical to reducing the missed opportunities in care for children with or at risk for DD. Studies have documented significant delays in the diagnosis of DD and in the receipt of services for many of these children.9, 10, 11, 12, 13, 14, 15, 16 Children at risk for delay may have greater need for services at preventive visits. In a sample of South Carolina Medicaid children, mean age at first diagnosis of DD was 4.08 to 4.27 years, with more than 25% diagnosed after their fifth birthday, creating a missed opportunity for early intervention.¹⁵ Among a national sample of children, just 10% of children with DD were receiving intervention services.¹⁷

Few data, however, are available on specific aspects of quality that are deficient in the care of children at risk for DD. That is, do children who are at risk for DD receive high-quality preventive care that can help ensure that their developmental needs are met? If not, what specific aspects of quality are most in need of attention for this population of children? These data could help us design preventive care to more adequately meet the needs of children at risk for DD.

In this article, we compare the quality of preventive care for children at risk and not at risk for DD. In examining quality, we focus on structures and processes of care in preventive visits, including having care that is comprehensive, coordinated, family-centered, and effective in providing recommended developmental screening and surveillance. Because the medical home has been shown to be a key contributor to high-quality care and a potential vehicle for reducing disparities in care, we will also compare the existence of a medical home for children at risk and not at risk for DD.8, 18

Section snippets

Procedures

We used data from the 2007 National Survey of Children’s Health (NSCH),¹⁹ a telephone survey sponsored by the U.S Department of Health and Human Services Maternal and Child Health Bureau and conducted by the National Center for Health Statistics. It uses the State and Local Area Integrated Telephone Survey system; the dataset provides detailed representative data at national and state levels on the health and well-being of U.S. children.

The NSCH is a random digit-dial sample of U.S. households

At Risk for DD

Twenty-eight percent of children were at risk for DD, with 17% at moderate risk and 11% at high risk. There were significant differences by child and family characteristics for children at risk (moderate or high risk) versus not risk (no/low risk; Table 1). Nonwhite race/ethnicity, poverty, lower parental educational level, non-English primary language households, male gender, older child age, special health care needs, and public insurance were all associated with being at risk for delay.

Elicitation of Parental Developmental Concerns and Developmental Screening

Discussion

The quality of preventive care provided to U.S. children at-risk for DD varied widely. Receipt of standardized developmental screening and elicitation of parental developmental concerns were quite low for children at all DD risk levels; however, children at moderate and high risk were significantly less likely than those at no/low risk to receive family-centered care and its individual components or to receive effective care coordination and problem-free referrals when they were needed. Because

Acknowledgment

Dr. Coker was supported by a Eunice Kennedy Shriver National Institute of Child Health and Human Development K23 mentored patient-oriented research career development award.

References (33)

J.S. Palfrey et al.
Early identification of children's special needs: A study in five metropolitan communities
J Pediatr
(1987)
D.S. Mandell et al.
Race differences in the age at diagnosis among Medicaid-eligible children with autism
J Am Acad Child Adolesc Psychiatry
(2002)
J.R. Mann et al.
Does race influence age of diagnosis for children with developmental delay?
Disability Health J
(2008)
C.D. Bethell et al.
A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations
Acad Pediatr
(2011)
C.D. Bethell et al.
Identifying children with special health care needs: development and evaluation of a short screening instrument
Ambul Pediatr
(2002)
K.E. Zuckerman et al.
Household language, parent developmental concerns, and child risk for developmental disorder
Acad Pediatr
(2009)
A.D. Guerrero et al.
An update on assessing development in the pediatric office: has anything changed after two policy statements?
Acad Pediatr
(2010)
J.L. Raphael et al.
Racial and ethnic disparities in indicators of a primary care medical home for children
Acad Pediatr
(2009)
Bright Futures Steering Committee. Recommendations for preventive pediatric health care
Pediatrics
(2007)

American Academy of Family Physicians. Policy Recommendations for Periodic Health Examinations. rev 6.0 ed. Leawood,...

US Preventive Services Task Force, ed. Guide to Clinical Preventive Services. 3rd ed. Rockville, MD: Agency for...

Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening

Pediatrics

(2006)

A.D. Guerrero et al.

Disparities in provider elicitation of parents' developmental concerns for US children

Pediatrics

(2011)

C. Bethell et al.

Rates of parent-centered developmental screening: disparities and links to services access

Pediatrics

(2011)

B.B. Strickland et al.

The medical home: health care access and impact for children and youth in the United States

Pediatrics

(2011)

Cited by (19)

Positive Parenting Matters in the Face of Early Adversity
2019, American Journal of Preventive Medicine
Citation Excerpt :
The NSCH-version includes nine questions from the clinical PEDS but omits all open-ended comments. Comparable with past work,19,20,27,28 this study uses the NSCH codebook criteria for PEDS scoring to create a binary indicator for developmental delay risk (DDR) that differentiates low or no risk from moderate or high risk. The NSCH 2011/2012 included flourishing items developed by a subgroup of the Child and Adolescent Health Measurement Initiative–led, Technical Expert Panel that set forth a framework, domains, and candidate items from which a condensed set was later selected after vetting combined input from public commentary and subject matter experts.27,29,30
A negative relationship between adverse childhood experiences and both physical and mental health in adulthood is well established, as is the positive impact of parenting on child development and future health. However, few studies have investigated unique influences of adverse childhood experiences and positive parenting together within a large, diverse early childhood sample.
The study used data on all children aged 0–5 years (n=29,997) from the National Survey of Children's Health 2011/2012 to examine effects of positive parenting practices and adverse childhood experiences on early childhood social–emotional skills and general development. All analyses were performed in 2017 and 2018.
More than a third of the sample reported experiencing at least one adverse childhood experience. More than a fourth (26.7%) met study criteria for social–emotional deficits, and 26.2% met criteria for developmental delay risks. The number of adverse childhood experiences exhibited negative marginal associations with social–emotional deficits and developmental delay risks, whereas the number of positive parenting practices showed independent protective effects. Risks associated with an absence of positive parenting were often greater than those of four or more adverse childhood experiences, even among no/low adversity families. The population attributable fractions for social–emotional deficits and developmental delay risks were 17.3% and 13.9% (translating to prevalence reductions of 4.5% and 3.6%) when adopting all positive parenting practices and 4.5% and 7.2% (prevalence reductions of 1.2% and 1.9%) when eliminating adverse childhood experiences.
The number of adverse childhood experiences was associated with both social–emotional deficits and developmental delay risks in early childhood; however, positive parenting practices demonstrated robust protective effects independent of the number of adverse childhood experiences. This evidence further supports promotion of positive parenting practices at home, especially for children exposed to high levels of adversity.
Supporting Families as They Transition Home
2016, Newborn and Infant Nursing Reviews
Citation Excerpt :
A family's experience and resources for transitioning home from the NICU will vary tremendously from state to state, community to community, and provider to provider. The critical importance of having a strong proactive medical home for these very vulnerable families cannot be overstated, and yet is inconsistently available.5 Some infants will benefit from more comprehensive developmental evaluation, which typically is available in a specialty developmental medicine follow-up clinic.19
For families who are leaving the neonatal intensive care unit (NICU) or other intensive care and going home with their child, the transition is often accompanied by intense and complex emotions. NICU discharge readiness for infants reflects attainment of physiological maturity. However, discharge readiness for parents is defined as the masterful attainment of technical skills and knowledge, emotional comfort, and confidence with infant care at the time of discharge. Discharge preparation is the process of facilitating comfort and confidence as well as the acquisition of knowledge and skills to successfully transition home. A comprehensive approach to discharge/transition planning that includes psycho-social support and a focus on the caregiver–child relationship offers families the support they need and deserve at a critical time in their lives. After discharge, follow-up should occur in a medical home and be supported by the wide range of programs and services available to babies and families when they leave the NICU or other intensive care unit. It is important for hospital and community programs to establish strong relationships with each other and to be knowledgeable about each other's systems and services so that families can experience a safe and smooth transition home.
Developmental Screening: What Every Nurse Practitioner Needs to Know
2016, Journal for Nurse Practitioners
Citation Excerpt :
It is estimated that approximately 45% of children eligible for early intervention services would be missed if only clinical impression was used to assess development.8 Studies have evaluated the developmental screening practices of providers.9-13 However, the majority of these studies were based on physician screening practices.
Developmental screening is performed to identify quickly and reliably those children whose developmental level is below normal for their age and who may benefit from further investigation. Nurse practitioners are uniquely positioned to offer routine developmental screening, leading to early identification, referral for diagnostic evaluation, and early intervention services when appropriate. The purpose of this article to inform nurse practitioners of the importance of employing evidence-based recommendations for developmental screening in primary care. Current screening recommendations from the American Academy of Pediatrics are discussed, and validated developmental screening instruments are highlighted.
Developmental Screening in the Primary Care Setting: A Qualitative Integrative Review for Nurses
2016, Journal of Pediatric Nursing
Standardized developmental screening leads to the identification of children with developmental delays who may benefit from early intervention. Many children with developmental delays are not identified early in life. An integrative review was performed to synthesize and critically analyze qualitative studies on the developmental screening experiences of parents and providers to develop a deeper understanding of the developmental screening gaps in clinical practice and increase awareness among healthcare professionals who care for children.
Qualitative studies written in English that focused on developmental screening in children from birth to school age and that included registered nurses, advanced practice nurses, pediatric or family physicians, or parents were considered.
Ten studies met the inclusion criteria.
The analysis resulted in four main themes: developmental screening behaviors, developmental screening barriers, developmental screening facilitators, and parent interactions.
Positive parent interactions and practice-wide engagement facilitated successful implementation of standardized developmental screening in primary care settings. Barriers associated with developmental screening included time, lack of reimbursement, poor communication with parents, and unfamiliarity with developmental screening instruments. A limited number of studies have examined developmental screening methods used by advanced practice nurses. Only two studies in the review included advanced practice nurses.
The developmental screening experiences of providers and parents increases awareness about the challenges associated with conducting developmental screening in primary care. Recommendations for future research are offered with a focus on advanced practice nurses in primary care.
Identification of neurodevelopmental disabilities in underserved children using telehealth (INvesT): Clinical trial study design
2015, Contemporary Clinical Trials
Citation Excerpt :
Early intervention has also been shown to increase positive functional outcome for children with diagnosed neurodevelopmental disabilities [14]; however, a novel approach for the initial step of identification prior to accessing early intervention is needed, especially for groups with document disparity in access to care [9]. Telehealth (AKA: Telemedicine, telepractice) is a service delivery method that could improve health care delivery for this population [15]. Telehealth involves the provision of professional services using telecommunications technology (e.g., Internet, videoconferencing), operating with an assortment of approaches, tools, and service delivery schedules.
Children living in poverty are at high risk for delays in development of language and behavior and they experience a discrepancy in diagnosis and access to intervention services. This gap is partially caused by barriers in access as well as traits that are specific to each child and family. The Identification of Neurodevelopmental Disabilities in Underserved Children using Telehealth (INvesT) trial is a novel intervention approach that was specifically designed to address these barriers.
The INvesT trial has three primary aims: 1) to reduce the age of identification of neurodevelopmental disability for high-risk, low-income children. 2) To validate the INvesT protocol as a service delivery model that will decrease age of identifications of neurodevelopmental disability for high-risk, low-income children; and 3) to identify important child-specific factors, family-specific factors, and environmental factors that impact feasibility and success of the INvesT trial for high-risk, low-income children.
The INvesT trial is an open-label, double-blinded, placebo-controlled multi-level study that includes telehealth risk assessment, telehealth screening, traditional full assessment, and follow through to enrollment in early intervention. The trial is conducted in partnership with an urban community health clinic that largely serves a low-income patient population.
The results of the INvesT trial will provide evidence for the use of a telehealth service delivery model to improve access to care for neurodevelopmental disabilities for high-risk, low-income children.
Training pediatric residents to provide parent education: A randomized controlled trial
2014, Academic Pediatrics
We evaluated the effect of Primary Care Positive Parenting Program (Triple P) training on pediatric residents and the families they serve to test 2 hypotheses: first, training would significantly improve resident skill in identifying and addressing discrete parenting and child behavior problems; and second, parents would report an improvement in their sense of self-efficacy, use of positive discipline strategies, and their child's behavior.
Study participants included pediatric residents from 3 community clinics of a pediatric residency program, as well as English-speaking parents of children aged 18 months to 12 years without a diagnosed behavior disorder cared for by study residents. Residents were randomized to receive Primary Care Triple P training either at the beginning or end of the study period. The measured resident outcomes were self-assessed confidence and skills in giving parenting advice. The measured family outcomes were parent sense of self-efficacy, child externalizing behavior, and discipline strategies.
Primary Care Triple P training had a positive, significant, and persistent impact on residents' parenting consultation skills (mean increase on Parent Consultation Skills Checklist 48.11, 95% confidence interval [CI] 40.07, 57.36). Parents visiting intervention-trained residents demonstrated improved disciplinary practices compared to parents visiting control residents (mean change in Child Discipline Survey 0.322, 95% CI 0.02, 0.71), with stronger differential effects for parents with lower baseline skills (mean Child Discipline Survey change 0.822, 95% CI 0.48, 1.83). No differences were found for child behavior or parenting sense of confidence.
Training residents in Primary Care Triple P can have a positive impact on consultation skills and parent disciplinary practices. This finding adds strength to the call for increased residency training in behavioral pediatrics.

View all citing articles on Scopus

View full text

Primary Care and Medical HomeParent-Reported Quality of Preventive Care for Children At-Risk for Developmental Delay

Abstract

Objective

Methods

Results

Conclusions

Introduction

Section snippets

Procedures

At Risk for DD

Elicitation of Parental Developmental Concerns and Developmental Screening

Discussion

Acknowledgment

J Pediatr

J Am Acad Child Adolesc Psychiatry

Disability Health J

Acad Pediatr

Ambul Pediatr

Acad Pediatr

Acad Pediatr

Acad Pediatr

Bright Futures Steering Committee. Recommendations for preventive pediatric health care

Pediatrics

Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening

Pediatrics

Disparities in provider elicitation of parents' developmental concerns for US children

Pediatrics

Rates of parent-centered developmental screening: disparities and links to services access

Pediatrics

The medical home: health care access and impact for children and youth in the United States

Pediatrics

Primary Care and Medical Home
Parent-Reported Quality of Preventive Care for Children At-Risk for Developmental Delay