The cost of long-term follow-up of high-risk infants for research studies.

AIMS: Neonatal intensive care is expensive, and thus it is essential that its long-term outcomes are measured. The costs of follow-up studies for high-risk children who survive are unknown. This study aims to determine current costs for the assessment of health and development of children followed up in our research programme. METHODS: Costs were determined for children involved in the research follow-up programme at the Royal Women's Hospital, Melbourne, over the 6-month period between 1st January 2012 and 30th June 2012. The time required for health professionals involved in assessments in early and later childhood was estimated, and converted into dollar costs. Costs for equipment and data management were added. Estimated costs were compared with actual costs of running the research follow-up programme. RESULTS: A total of 134 children were assessed over the 6-month period. The estimated average cost per child assessed was $1184, much higher than was expected. The estimated cost to assess a toddler was $1149, whereas for an 11-year-old it was $1443, the difference attributable to the longer psychological and paediatric assessments. The actual average cost per child assessed was $1623. The shortfall of $439 between the actual and estimated average costs per child arose chiefly because of the need to pay staff even when participants were late or failed to attend. CONCLUSIONS: The average costs of assessing children at each age for research studies are much higher than expected. These data are useful for planning similar long-term follow-up assessments for high-risk children.

Long term follow up of high risk children: who, why and how?

BACKGROUND: Most babies are born healthy and grow and develop normally through childhood. There are, however, clearly identifiable high-risk groups of survivors, such as those born preterm or with ill-health, who are destined to have higher than expected rates of health or developmental problems, and for whom more structured and specialised follow-up programs are warranted. DISCUSSION: This paper presents the results of a two-day workshop held in Melbourne, Australia, to discuss neonatal populations in need of more structured follow-up and why, in addition to how, such a follow-up programme might be structured. Issues discussed included the ages of follow-up, and the personnel and assessment tools that might be required. Challenges for translating results into both clinical practice and research were identified. Further issues covered included information sharing, best practice for families and research gaps. SUMMARY: A substantial minority of high-risk children has long-term medical, developmental and psychological adverse outcomes and will consume extensive health and education services as they grow older. Early intervention to prevent adverse outcomes and the effective integration of services once problems are identified may reduce the prevalence and severity of certain outcomes, and will contribute to an efficient and effective use of health resources. The shared long-term goal for families and professionals is to work toward ensuring that high risk children maximise their potential and become productive and valued members of society.

Adult psychiatric outcomes of very low birth weight survivors.

BACKGROUND: Childhood studies have identified relationships between low birth weight and a variety of psychological disorders. However, very few studies have prospectively followed VLBW survivors into adulthood and none have examined adult psychiatric disorders in this population. OBJECTIVE: This exploratory study sought to determine the rates and nature of psychiatric disorders in very low birth weight (VLBW, birth weight < 1500 g) adults. METHOD: 117 VLBW participants and 32 normal birth weight (NBW, birth weight > 2499 g) controls, born 1977-1982, were assessed in early adulthood (24-29 years). Participants were first screened for psychopathology using the Symptoms Checklist (SCL-90-R). Participants who were elevated on this measure were eligible for a Structured Clinical Interview for DSM-IV-TR (SCID-I/NP) to determine a formal psychiatric diagnosis. RESULTS: VLBW adults were more likely than controls to be elevated on the Global Severity Index (odds ratio (OR) = 4.29, 95% confidence interval (CI) = 0.96, 19.14) and the depression (OR = 5.17, 95%CI = 1.17, 23.00), paranoid ideation (OR = 4.08, 95%CI = 0.91, 18.23), hostility (relative risk (RR) = 1.34, 95%CI = 1.21, 1.49), and interpersonal sensitivity (OR = 3.80, 95%CI = 1.08, 13.32) subscales of the SCL-90-R. VLBW adults were also more likely to be diagnosed with a current mood disorder than NBW adults (RR = 1.36, 95%CI = 1.22, 1.51). CONCLUSIONS: VLBW adults are at greater risk of psychopathology than NBW peers.

Developmental Disability at School Age and Difficulty Obtaining Follow-up Data.

BACKGROUND: The relationship of developmental disability rates with difficulty obtaining follow-up data is unclear. With this study, we aimed to determine if children who attended research follow-up assessments with more difficulty had more disability at school age, compared with those who attended with less difficulty, and to establish the relationship between follow-up and disability rates. METHODS: Two groups, comprising 219 consecutive survivors born at <28 weeks' gestation or at <1000 g birth weight in the state of Victoria, Australia, in 2005, and 218 term-born, normal birth weight controls were assessed at 8 years of age for neurodevelopmental disability (any of IQ <-1 SD, cerebral palsy, blindness, or deafness). Children were classified as either more or less difficult to get to attend by research nurses involved in the study. RESULTS: The follow-up rate was 87% for both groups. Overall, children who attended with more difficulty had higher rates of neurodevelopmental disability (42%; 19 of 45) than those who attended with less difficulty (20%; 66 of 328) (odds ratio: 3.09, 95% confidence interval: 1.58 to 6.01; P = .001). As the follow-up rate rose among the 3 individual hospitals involved in the assessments, so did the rate of neurodevelopmental disability (P = .025). CONCLUSIONS: Children who attend with more difficulty have higher rates of neurodevelopmental disability at school age than those who attend with less difficulty, and disability rates rise with higher follow-up rates. Rates of neurodevelopmental disability will be underestimated if researchers are not persistent enough to obtain high follow-up rates.

Lung function in adult survivors of very low birth weight, with and without bronchopulmonary dysplasia.

INTRODUCTION: The lung function outcome of cohorts of very low birth weight (VLBW; birth weight <1501 g) survivors born in the late 1970s or early 1980s into adulthood at an age when lung growth would be expected to have ceased is not well described. The aim of this study was to report lung function data in adulthood of VLBW survivors compared with normal birth weight controls (>2499 g), and in those who had bronchopulmonary dysplasia (BPD) compared with those without BPD. MATERIALS AND METHODS: Spirometry and lung volumes were measured according to standard guidelines when subjects were in their mid-20s; there were 47 survivors of birth weight <1000 g, 40 of birth weight 1000-1500 g, and 20 controls of birth weight >2499 g. Results were converted to z-scores. RESULTS: Both subgroups with birth weight <1501 g had significant reductions in airflow compared with controls, but not compared with each other. There were no significant differences between groups in variables reflecting air trapping. Within the VLBW cohort, those with BPD (n = 24) had reductions in airflow, including the z-score for the forced expired volume in 1 sec (FEV1 ), compared with those without BPD (n = 63). Within the VLBW cohort, there were positive relationships between FEV1 measurements earlier in childhood with those obtained at 25 years of age; these relationships were stronger in those who had BPD in the newborn period, and increased over time. CONCLUSIONS: VLBW survivors continue to have airways obstruction in their mid-20s compared with controls, particularly those who had BPD in the newborn period.

Bronchopulmonary dysplasia in very low birth weight subjects and lung function in late adolescence.

OBJECTIVES: The purpose of this work was to determine the relationship between lung function in late adolescence and bronchopulmonary dysplasia, to establish whether lung function changed more from earlier in childhood in those with bronchopulmonary dysplasia, and to assess the effect of different definitions of bronchopulmonary dysplasia on respiratory outcome. METHODS: Subjects were composed of 147 survivors of birth weight <1500 g from the Royal Women's Hospital (Melbourne, Australia) born during 1977-1982 and who had lung function tests at a mean age of 18.9 years. Of the 147 subjects, 33 (22%) had bronchopulmonary dysplasia in the newborn period. Lung function was measured according to American Thoracic Society guidelines. RESULTS: All of the lung function variables reflecting airflow were substantially diminished in the bronchopulmonary dysplasia group, but lung volumes were not significantly different. More subjects in the bronchopulmonary dysplasia group had reductions in airflow in the clinically significant range (eg, forced expired volume in 1 second/forced vital capacity ratio <75%; bronchopulmonary dysplasia: 42.4% [14 of 33]; and no bronchopulmonary dysplasia: 16.4% [18/114]). Results were not substantially affected after adjustment for confounding variables, including intrauterine growth restriction or birth weight. Compared with earlier in childhood, the forced expired volume in 1 second/forced vital capacity ratio deteriorated more in bronchopulmonary dysplasia subjects between 8 and 18 years. Lung function results varied little with different definitions of bronchopulmonary dysplasia. CONCLUSIONS: Subjects of very low birth weight with bronchopulmonary dysplasia in the newborn period have poorer lung function in late adolescence than those without bronchopulmonary dysplasia, and their lung function may be deteriorating at a more rapid rate.

Blood pressure in late adolescence and very low birth weight.

OBJECTIVES: To determine whether blood pressure (BP) differed between very low birth weight (VLBW; birth weight 2499 g) subjects in late adolescence, and to determine whether growth restriction in utero was related to BP in VLBW survivors at this age. METHODS: This was a cohort study of 210 preterm survivors with birth weights <1501 g born from January 1, 1977, to March 31, 1982, and 60 randomly selected NBW subjects from the Royal Women's Hospital, Melbourne. BP was measured at 18+ years of age in 156 (74%) VLBW subjects and 38 (63%) NBW subjects with both a standard mercury sphygmomanometer and an ambulatory BP monitor. RESULTS: VLBW subjects had higher sphygmomanometer systolic and diastolic BPs than NBW subjects (mm Hg; mean difference [95% confidence interval]; systolic, 8.6 [3.4, 13.9]; diastolic, 4.3 [1.0, 7.6]). VLBW subjects also had significantly higher mean systolic ambulatory BPs (mm Hg; mean difference [95% confidence interval]) for the 24-hour period (4.7 [1.4, 8.0]), and for both the awake (5.0 [1.6, 8.5]) and asleep (3.6 [0.04, 7.1]) periods. There were no significant differences between the birth weight groups for any ambulatory diastolic BPs. Within the VLBW subjects, there was no significant relationship between birth weight standard deviation score and any measure of BP. CONCLUSIONS: BP was significantly higher in late adolescence in VLBW survivors than in NBW subjects. Growth restriction in utero was not significantly related to BP in VLBW survivors.

Adverse effects of smoking on respiratory function in young adults born weighing less than 1000 grams.

OBJECTIVE: To determine whether active smoking has an adverse impact on respiratory function of young adults of extremely low birth weight (ELBW; birth weight <1000 g). METHODS: This was a cohort study of 60 consecutive ELBW survivors who were born during 1977-1980 at Royal Women's Hospital, Melbourne, Australia. Respiratory function was measured on 44 (73%) of the subjects at a mean age of 20.2 years (standard deviation: 1.0 year). Respiratory function had also been measured on 42 of the 44 subjects at 8 years of age. Respiratory function was compared between the 14 smokers and the 30 nonsmokers. RESULTS: Several respiratory function variables reflecting airflow (the forced expired volume in 1 second [FEV(1)]/forced vital capacity [FVC] ratio; flow rates at 75%, 50%, and 25% of vital capacity; and mid-expiratory flow from 25% to 75% of vital capacity) were significantly diminished in smokers. The proportion with a clinically important reduction in the FEV(1)/FVC ratio (<75%) was significantly higher in smokers (64%) than in nonsmokers (20%). There was a significantly larger decrease in the FEV(1)/FVC ratio between ages 8 and 20 years in the smokers (mean change: -8.2%; 95% confidence interval: -14.1% to -2.4%) CONCLUSIONS: Active smoking by young adult survivors of ELBW is associated with reduced respiratory function.