Current state of high-risk infant follow-up care in the United States: results of a national survey of academic follow-up programs.
ABSTRACT High-risk infant follow-up programs have the potential to act as multipurpose clinics by providing continuity of clinical care, education of health care trainees and facilitating outcome data research. Currently there are no nationally representative data on high-risk infant follow-up practices in the United States. The objective of this study is to collect information about the composition of high-risk infant follow-up programs associated with academic centers in the United States, with respect to their structure, function, funding resources and developmental assessment practices, and to identify the barriers to establishment of such programs.
Staff neonatologists, follow-up program directors and division directors of 170 Neonatal Intensive Care Units (NICU) associated with pediatric residency programs were invited to participate in an anonymous online survey from October 2009 to January 2010.
The overall response rate was 84%. Ninety three percent of the respondents have a follow-up program associated with their NICU. Birth weight, gestational age and critical illness in the NICU were the major criteria for follow-up care. Management of nutrition and neurodevelopmental assessments was the most common service provided. Over 70% have health care trainees in the clinic. About 75% of the respondents have the neurodevelopmental outcome data available. Most of the respondents reported multiple funding sources. Lack of personnel and funding were the most common causes for not having a follow-up program.
High-risk infant follow-up programs associated with academic centers in the United States are functioning as multidisciplinary programs providing clinical care, trainee education and facilitating outcomes research.
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ABSTRACT: Background Despite the benefits of Neonatal Follow-Up (NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' (HCP) perspectives.Methods In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis.ResultsThe predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources.Conclusions Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation – a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions.Child Care Health and Development 10/2014; DOI:10.1111/cch.12202 · 1.83 Impact Factor
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ABSTRACT: Objective:A mandate exists that all level III neonatal intensive care units (NICUs) provide a means to assess and follow their high-risk neonates after discharge. However, no standardized guidelines exist for the follow-up services provided. To determine trends of structure and care provided in NICU follow-up clinics in both the academic and private clinical setting.Study Design:We sent an Internet survey to NICU follow-up clinic directors at both academically affiliated and private centers. This study received institutional review board exemption.Result:We received 89 surveys from academic institutions and 94 from private level III follow-up programs. These responses represent 55% of academic programs and 40% of private programs in the United States. Similar to academic institutions, 18% of private NICU follow-up clinics provide primary care services to patients. In both settings, the hospital supports 60% of the funding required for clinic activities. Forty-five percent of NICU graduates seen in both private and academic follow-up clinics have public aid as their primary insurance. Eighty-five percent of NICUs in both settings have guidelines outlining requirements for referrals to the follow-up clinic. Academic programs find feeding difficulties the most difficult, whereas private programs find bronchopulmonary dysplasia and feeding difficulties equally as difficult.Conclusion:The care and struggles of NICU follow-up clinics are similar in both the academic affiliated and private settings. Similar referrals, clinical evaluation and medical care occur with varying struggles.Journal of Perinatology advance online publication, 31 October 2013; doi:10.1038/jp.2013.136.Journal of perinatology: official journal of the California Perinatal Association 10/2013; DOI:10.1038/jp.2013.136 · 2.35 Impact Factor
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ABSTRACT: To determine rates and factors associated with referral to the California Children's Services high-risk infant follow-up (HRIF) program among very low birth weight (BW) infants in the California Perinatal Quality of Care Collaborative. Using multivariable logistic regression, we examined independent associations of demographic and clinical variables, neonatal intensive care unit (NICU) volume and level, and California region with HRIF referral. In 2010-2011, 8071 very low BW infants were discharged home; 6424 (80%) were referred to HRIF. Higher odds for HRIF referral were associated with lower BW (OR 1.9, 95% CI 1.5-2.4; ≤ 750 g vs 1251-1499 g), higher NICU volume (OR 1.6, 1.2-2.1; highest vs lowest quartile), and California Children's Services Regional level (OR 3.1, 2.3-4.3, vs intermediate); and lower odds with small for gestational age (OR 0.79, 0.68-0.92), and maternal race African American (OR 0.58, 0.47-0.71) and Hispanic (OR 0.65, 0.55-0.76) vs white. There was wide variability in referral among regions (8%-98%) and NICUs (<5%-100%), which remained after risk adjustment. There are considerable disparities in HRIF referral, some of which may indicate regional and individual NICU resource challenges and barriers. Understanding demographic and clinical factors associated with failure to refer present opportunities for targeted quality improvement initiatives. Copyright © 2014 Elsevier Inc. All rights reserved.Journal of Pediatrics 11/2014; DOI:10.1016/j.jpeds.2014.10.038 · 3.74 Impact Factor