Long term follow up of high risk children: who, why and how? (original) (raw)
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Clinical outcomes of high-risk infant follow-up program in a tertiary care centre
Iranian Journal of Nursing and Midwifery Research, 2017
Background:High-risk infant follow-up (HRIF) program is necessary for early detection, timely intervention, and promotion of health outcomes in vulnerable infants, ethically. The present study was carried out to assess the clinical outcomes of the HRIF Program in Alzahra hospital as a tertiary care centre, in Iran.Materials and Methods:In this cohort study, 5840 neonates were born at Alzahra hospital, from June 1, 2011 to 30th February 2012. Among those who were admitted to neonatal intensive care unit (NICU), 253 infants were recruited by census according to HRIs criteria. After doing necessary measurements and family education, information was recorded in HRI health certificate and then entered in the access database for analysis.Results:From 253 eligible HRIs registered, 241 (95%) infants attended the follow-up clinic after discharge. A total of180 cases were recalled for further visits, 110 of which attended the clinic. Anthropometric indices had an increasing trend in the first 6 months of life. There was no significant relation between ages and stages questionnaire (ASQ) results and infant birth weight, height, and head circumference. The ratios of intraventricular hemorrhage (IVH) and retinopathy of prematurity (ROP) were 8.7% and 3.1%, respectively. The incidence of congenital hypothyroidism was 2:341 in HRIs.Conclusions:Although some outcomes, such as ROP, improved in our study compared to similar studies, the findings indicate an impairment of the current follow-up processes and highlight the necessity to modify the current HRIF program. Ethically, we insist on integrating HRIF program in child health services to promote early childhood development.
Follow-up of high risk neonates
Indian journal of pediatrics, 2008
The improvement in perinatal care has led to increase in survival as well as reduction of morbidity in sick newborns. These babies need to be followed up regularly to assess growth and neurodevelopmental outcome and for early stimulation and rehabilitation. We present a protocol describing the various components of a follow up program, and services.
Which high-risk infants should we follow-up and how should we do it?
Journal of Paediatrics and Child Health, 2012
Early detection of neurodevelopmental delay and appropriate intervention has been associated with improved academic and social outcomes. Identifying those who are at high risk and might benefit is not straightforward. Approximately 2% of infants are admitted to a neonatal intensive care unit after birth and these babies are known to be at high risk of developmental impairment. While it is well recognised that the extreme preterm infant is at high risk of developmental impairment, there is increasing evidence of a risk in late preterm infants as well as those undergoing major cardiac and non-cardiac surgery. Not all infants are enrolled in multidisciplinary follow-up clinics with easy access to early intervention. These clinics are expensive to run with both limited and conflicting data on their long-term value. This review will concentrate on identifying which infants are at risk, reviewing the aetiology of the risk factors and the efficacy of follow-up clinics.
Child: Care, Health and Development, 2019
Background: With improving neonatal intensive care, more preterm babies or those with hypoxic-ischaemic encephalopathy are surviving the newborn period. These babies are at high risk of neurodevelopmental delay. No studies to date have looked at the views of parents and professionals in relation to the processes of follow-up for these infants. Methods: We conducted a qualitative study in order to understand the views of parents of preterm babies or those with hypoxic-ischaemic encephalopathy as well as the views of professionals who manage and support these families. Parents were recruited through general neonatal follow-up clinics, neonatal nurse liaison services and community child health clinics and professionals through the neonatal unit and neurodevelopmental paediatrics services. We conducted in-depth interviews using an open-ended topic guide, which were audio recorded, transcribed and coded. We conducted a thematic content analysis where themes were inductively highlighted and grouped by consensus in order to conclude on major themes and subthemes. Results: Three major themes were identified for parents and professionals. These were the following: (a) What is the future, (b) What is the journey and (c) Who can help me? Parents wanted better information earlier about the prognosis and diagnoses through face to face, honest consultations with follow-up information available on the Internet. The most important requirements for follow-up clinics were honesty, reassurance, consistent pathways of follow-up and the need for a lead professional in the process. Alongside the follow-up process, there was a need for support groups and psychological support Conclusions: This study highlights the desire by parents for early information on the likely long-term outlook for their babies but the need to ensure that the information and support, which is given, is provided appropriately and with consideration in order to provide the best care of the whole family.
High Risk Infants Follow-Up: A Case Study in Iran
International Journal of Pediatrics, 2015
Background. A follow-up program for high risk infants was initiated in Alzahra Maternity Hospital in Tabriz city, Iran, in 2013. The aim of this paper is to give a brief report of the program.Material and Methods. Two groups of high risk neonates were studied. The first group comprising 509 infants received services in Alzahra Maternity Hospital implemented by the follow-up program. This included a full package for family to look after high risk infant and periodic clinical evaluation at two and four weeks after birth and then two, three, four, five, and six months later again. The second group including 131 infants in Taleqani Maternity Hospital received routine services after birth with no specific follow-up care.Results. Some anthropometric indices showed a significant improvement in the intervention hospital compared to control group. These included the following: head circumference at first and second months; weight in the first, fourth, fifth, and sixth months; and height in s...
Archives of Disease in Childhood - Fetal and Neonatal Edition, 2000
Objectives-To compare outcomes of care in selected neonatal intensive care units (NICUs) for very low birthweight (VLBW) or preterm infants in Scotland and Australia (study 1) and perinatal care for all VLBW infants in both countries (study 2). Design-Study 1: risk adjusted cohort study; study 2: population based cohort study. Subjects-Study 1: all 2621 infants of < 1500 g birth weight or < 31 weeks' gestation admitted to a volunteer sample of hospitals comprising eight of all 17 Scottish NICUs and six of all 12 tertiary NICUs in New South Wales and Queensland in 1993-1994; study 2: all 5986 infants of 500-1499 g birth weight registered as live born in Scotland and Australia in 1993-1994. Main outcomes-Study 1: (a) hospital death; (b) death or cerebral damage, each adjusted for gestation and CRIB (clinical risk index for babies); study 2: neonatal (28 day) mortality. Results-Study 1. Data were obtained for 1628 admissions in six Australian NICUs, 775 in five Scottish tertiary NICUs, and 148 in three Scottish non-tertiary NICUs. Crude hospital death rates were 13%, 22%, and 22% respectively. Risk adjusted hospital mortality was about 50% higher in Scottish than in Australian NICUs (adjusted mortality ratio 1.46, 95% confidence interval (CI) 1.29 to 1.63, p < 0.001). There was no diVerence in risk adjusted outcomes between Scottish tertiary and nontertiary NICUs. After risk adjustment, death or cerebral damage was more common in Scottish than Australian NICUs (odds ratio 1.9, 95% CI 1.5 to 2.5). Both these risk adjusted adverse outcomes remained more common in Scottish than Australian NICUs after excluding all infants < 28 weeks' gestation from the comparison. Study 2. Population based neonatal mortality in infants of 500-1499 g was higher in Scotland (20.3%) than Australia (16.6%) (relative risk 1.22, 95% CI 1.08 to 1.39, p = 0.002). In a post hoc analysis, neonatal mortality was also higher in England and Wales than in Australia. Conclusions-Study 1: outcome was better in the Australian NICUs. Study 2: perinatal outcome was better in Australia. Both results may be consistent, at least in part, with diVerences in the organisation and implementation of neonatal care.
Outcomes for high risk New Zealand newborn infants in 1998–1999: a population based, national study
2003
Objective: To determine short term morbidity and mortality outcomes, provision of care, and treatments for a national cohort of high risk infants born in 1998-1999 and admitted to New Zealand neonatal intensive care units (NICUs). Setting: All level III (six) and level II (13) NICUs in New Zealand. Methods: Prospective audit by the Australian and New Zealand Neonatal Network (ANZNN) of all infants defined as "high risk" (born at < 32 weeks gestation or < 1500 g birth weight, or received assisted ventilation for four hours or more, or had major surgery). Data were collected from birth until discharge home or death. Results: There were 3368 high risk infants (3.0% of all live births), comprising 1241 (37%) < 32 weeks gestation, 1084 (32%) < 1500 g, 3156 (94%) who received assisted ventilation, and 243 (7%) who received major surgery (categories overlap). Most infants (87%) received some care in tertiary hospitals, and 13% were cared for entirely in non-tertiary hospitals. Survival was 91% for infants < 32 weeks gestation, 97% for infants > 32 weeks gestation who received assisted ventilation, and 92% for infants > 32 weeks gestation who had major surgery. The proportion of very preterm infants who survived free of early major morbidity was 11%, 28%, 53%, 81%, and 90% for infants born at < 24, 24-25, 26-27, 28-29, and 30-31 weeks gestation respectively. Conclusions: These unique population based national data provide contemporary information on the care and early morbidity and mortality outcomes for all high risk infants, whether cared for in hospitals with level III or level II NICUs.
Turkish Neonatal Society guideline on the follow-up of high-risk newborn infants
Türk Pediatri Arşivi
Developments in perinatal and neonatal care have increased the survival rate of high-risk newborns but led to a rise in chronic diseases seen in these infants. A significant number of them attend primary and secondary health care centers after discharge; however, there are very few standard protocols for the long-term follow-up of these babies. Therefore, we aimed to establish a follow-up guideline that emphasizes on universal screening schemes and takes into consideration national data. The guide presented here provides brief recommendations for physicians in light of evidence-based data for the follow-up of high-risk newborn infants. The steps taken to monitor and solve the problems of all high-risk infants may vary. We hope the use of such a standard approach in evaluating each infant in daily routine will improve the life quality of these highrisk infants.
Participant retention in follow-up studies of prematurely born children
BMC Public Health, 2019
Background: Follow-up studies of infants born prematurely are essential to understand the long-term consequences of preterm birth and the efficacy of interventions delivered in the neonatal period. Retention of participants for followup studies, however, is challenging, with attrition rates of up to 70%. Our aim was to examine retention rates in two follow-up studies of prematurely born children and identify participant or study characteristics that were associated with higher attrition, and to discuss retention strategies with regard to the literature. Methods: Data from children recruited at birth to one of two studies of prematurely born infants were assessed. The two studies were the United Kingdom Oscillation Study (UKOS, a randomised study comparing two modes of neonatal ventilation in infants born less than 29 weeks of gestational age (GA)), and an observational study examining the impact of viral lower respiratory tract infections in infancy in those born less than 36 weeks of GA (virus study). The UKOS participants, but not those in the virus study, had regularly been contacted throughout the follow-up period. UKOS subjects were followed up at 11 to 14 years of age and subjects in the virus study at 5-7 years of age. At follow up in both studies, pulmonary function and respiratory morbidity were assessed. Retention rates to follow-up in the two studies and baseline characteristics of those who were and were not retained were assessed. Results: Retention was significantly higher in UKOS than the virus study (61% versus 35%, p < 0.0001). Subjects lost to UKOS follow up had greater deprivation scores (p < 0.001), a greater likelihood of intrauterine tobacco exposure (p = 0.001) and were more likely to be of non-white ethnicity (p < 0.001). In the virus study, those lost to follow-up had higher birth weights (p = 0.036) and were less likely to be oxygen dependent at hospital discharge (p = 0.003) or be part of a multiple birth (p = 0.048). Conclusions: Higher retention was demonstrated when there was regular contact in the follow-up period. Both social factors and initial illness severity affected the retention into follow-up studies of prematurely born infants, though these factors were not consistent across the two studies.