Introduces a multidimensional framework for examining the development and adaptation of children with chronic illness, encompassing biomedical, psychological, and socio-ecological factors. Illnesses discussed are asthma, cancer, cystic fibrosis, diabetes, sickle cell disease and spina bifida.

Adaptation to Chronic Childhood Illness

We examined the neonatal mortality rates of low-birth-weight infants (501 to 2250 g) born between 1976 and 1978 in three kinds of hospitals in New York City: those with newborn-intensive-care units (Level 3), those with capabilities for the care of most premature infants (Level 2), and those without any special facilities for premature newborns (Level 1). Among 13,560 singleton low-birth-weight infants, the adjusted neonatal mortality rate for Level 3 hospitals was 128.5 per thousand live births — significantly lower (P<0.001) than the rates for both Level 2 (168.1) and Level 1 units (163.0). The association of level of care with mortality could not be accounted for by differences between groups in social or demographic status, in prenatal care, or in medical complications of pregnancy. We infer that birth at a Level 3 center lowers neonatal mortality in low-birth-weight infants. However, only 34 per cent of the patients in this study were born in such units. (N Engl J Med. 1982; 307:149–55.)

Newborn intensive care and neonatal mortality in low-birth-weight infants: a population study.

. Neonatal follow-up studies of school age children, published in the last decade, were critically reviewed. Nine studies examined extremely low birthweight infants (≤1000 g) and 16 involved very low birthweight infants (≤1500 8). The majority of children had age appropriate I.Q. scores, however, there was a greater variability of test scores. There was an increased need for special education or remedial therapy. Visual-motor integration deficits were frequently reported. Behavioural difficulties were described. Fine and gross motor incoordination was identified. There was no conclusive correlation between perinatal course and school outcome. Gender did appear to influence outcome, in the small percent of studies which examined this variable, with females generally faring better. Low socioeconomic status was the most frequently reported predictor of poor outcome. Identified methodological limitations included heterogeneous samples, lack of control groups, high attrition, variable diagnostic criteria and lack of consensus regarding correction for prematurity.

Neonatal follow-up of very low birthweight/extremely low birthweight infants to school age: a critical overview.

Status and Prestige in Australia.

The educational, motor, and behavioural performance of a hospital based cohort of 51 children aged 8 years with birth weights of 1250 g or less is reported, as part of a longitudinal study. Compared with age, race and sex matched classmates, who were examined at school at the same visit, the very low birthweight (VLBW) group performed less well on the basic mathematics test A, the Schonell spelling test, and the test of motor impairment. Reading performance was also poorer in this group. Twenty three (45%) VLBW children were having difficulty with one or more school subjects compared with 11 (19%) controls, and 15 (26%) had difficulties in two or more areas, compared with three (5%) controls. Parents of VLBW children reported a similar frequency of behavioural problems to controls but teachers identified characteristics typical of emotional disorders and overactivity more frequently among the VLBW group. Motor testing at 6 years of age was the best predictor of school problems at 8 years, correctly identifying 15/16 children with multiple problems with a low (33%) positive predictive value but a high (98%) negative predictive value. Children with birth weights of 1250 g or less and no major impairment have a high frequency of learning difficulties that become more apparent with advancing age. Such problems may be predicted at an earlier age by detailed motor testing.

https://adc.bmj.com/content/archdischild/68/3_Spec_No/286.full.pdf

Outcome at 8 years for children with birth weights of 1250 g or less

A cohort of 169 very low-birthweight infants (800 to 1500g) was followed prospectively to the age of eight years. Information on 159 of the children was available at that age, and for a further five to the age of six years. A comparison group of 67 normal-birthweight children was also followed, but only 43 of these children were seen at the age of eight years. Eight of the very low-birthweight (VLBW) children were attending special schools and 156 attended normal schools: placement of the remaining five was unknown. Of the VLBW children who were adequately assessed, 15.9 per cent were either not reading or were retarded by more than 18 months. Mean VLBW full-scale IQ was 88.8, compared with 98.8 for the normal-birthweight group. A subgroup of 10 VLBW children with birthweights under 1000g had lower mean scores on all three WISC-R scales compared with those with birthweights between 1000 and 1500g. Of the adequately assessed VLBW children, 3.7 per cent had epilepsy, 3.7 per cent had significant sensorineural deafness and 2.4 per cent suffered from cerebral palsy. One or more visual defects were detected in 31.4 per cent of the children, though in only 3.8 per cent was the defect serious. At eight years, growth dimensions for the VLBW children were below the 10th percentile for 11.0 per cent in weight, 16.1 per cent in height and 15.0 per cent in head circumference. Degrees of handicap in the VLBW children were profound in 5.1 per cent, severe in 10.8 per cent and significant in 40.5 per cent: handicap was minimal or absent in the remaining 43.6 per cent. For the normal-birthweight group the percentages were 2.3, 0, 25.6 and 72.1 respectively. The VLBW children with minimal or no handicap were considered to have a satisfactory outcome. This was significantly correlated with the following: gestation over 30 weeks; birthweight over 1199g; no major apnoeic attacks; lowest postnatal weight before six days; return to birth weight before 21 days; peak serum bilirubin not exceeding 255 mumol/litre; and parental social-class between 2 and 5 on the seven-point Congalton Scale.

A Longitudinal Study of Very Low‐birthweight Infants. IV: An Overview of Performance at Eight Years of Age

Of 456 consecutive infants born in a tertiary maternity centre in 1966-70 and of birthweight under 1501 g, 171 (37.5%) survived their primary hospitalization. Subsequently three children died and the outcome of 142 (90.5%) of the remaining children presumably still alive were reviewed at a mean age of 14.5 years. Four children had cerebral palsy although only one child was legally blind, 31.6% (48/152) had an existing or corrected visual impairment; visual impairments occurred significantly more frequently in those of birthweight under 1251 g or those born before 29 weeks gestation. Six children required hearing aids and three others were still epileptic. Four children were chronic asthmatics and one had rheumatoid arthritis. None had disabling malformations and there was no delay in pubertal changes. The distributions of weight, height and head circumference percentiles were not significantly different from a standard Australian population. For children in the cohort, weights and heights were under the 10th percentile in 13.4% and 14.1%, respectively. Of the 30 children with birthweights under the 10th percentile and who were reviewed as teenagers, only eight (26.7%) were still in this weight category.

Longitudinal study of very low birthweight infants: impairments, health and distance growth to 14 years of age.

SUMMARY

A group of 238 infants, weighing between 1000g and 1500g and born consecutively in one hospital between 1966 and 1970, were entered in a controlled trial in an attempt to determine whether intensive care of very low-birthweight (VLBW) infants affects long-term survival and the incidence of severe handicap. The infants were allotted on an alternate basis to either intensive care or routine care. The methods of intensive and routine care are described in detail. All the VLBW infants received the same basic nursery care.



The 160 infants discharged home are being reviewed up to the age of eight years by a multidisciplinary team. Two of these infants have died, one unexpectedly and the other from a congenital defect.



Infants with respiratory distress who were treated intensively in the latter part of the study had an increased survival rate and the possible reasons for this are discussed. The study also shows that the unexpected death of a VLBW infant after discharge from hospital is not now a common occurrence.



RESUME

Etude longitudinale de nourrissons de tres faible poids de naissance



Un groupe de 238 nourrissons, pesant a la naissance entre 1000g et 1500g, nes sequentiellement dans un meme hopital entre 1966 et 1970, ont fait l'objet d'un examen de controle dans le but d'etablir si des soins intensifs aux nourrissons de tres faible poids de naissance (TFPN) modifient la survie a long terme et la frequence des handicaps severes. Les nourrissons ont ete classes sur l'opposition soins intensifs—soins de routine. Les methodes de soins intensifs et de soins de routine sont decrits en detail. Tous les nourrissons TFPN recurent les memes soins de pouponniere.



Les 160 nourrissons renvoyes chez eux ont ete examines a l'âge de huit ans par une equipe multidisciplinaire. Deux de ces enfants etaient morts, l'un de facon inattendue et l'autre d'une anomalie congenitale.



Les nourrissons avec detresse respiratoire, traites intensivement durant la derniere periode de l'etude, ont un taux de survie accru et les raisons en sont discutees. L'etude montre egalement que la mort inattendue d'un nourrisson TFPN apres la sortie hospitaliere n'est pas actuellement un fait frequent.



ZUSAMMENFASSUNG

Langzeitstudie von Kindern mit sehr niedrigem Geburtsgewicht



238 Sauglinge mit einem Gewicht von 1000 bis 1500g, die von 1966 bis 1970 in einem Krankenhaus geboren worden waren, wurden in einer kontrollierten Studie zusammen gefasst. Ziel dieser Untersuchung war es herauszufinden, ob die Intensivpflege bei Kindern mit sehr niedrigem Geburtsgewicht (VLBW) einen Einfluss auf die Langzeituberlebenschance und auf das Vorkommen von Behinderungen hat. Die Kinder wurden alternierend der Intensivepflegeeinheit oder der Routinepflegeeinheit zugeteilt. Die Durchfuhrung der Intensiv- und der Routineversorgung wird im Einzelnen dargestellt. Alle VLBW-Kinder bekamen dieselbe allgemeine pflegerische Betreuung.



Die 160 Kinder, die nach Hause entlassen wurden, werden bis zum achten Lebensjahr durch ein Untersuchungsteam verschiedener Disziplinen nachuntersucht. Zwei dieser Kinder sind gestorben, eins unerwartet, das andere auf Grund angeborener Missbildungen.



Sauglinge mit Atemproblemen, die in den letzten Jahren intensiv versorgt wurden, hatten eine erhohte Uberlebensrate; die moglichen Grunde dafur werden diskutiert. Die Studie zeigt ausserdem, dass der plotzliche Tod eines VLBW-Kindes nach der Entlassung aus dem Krankenhaus nicht mehr sehr haufig vorkommt.



RESUMEN



Estudio longitudinal de lactantes con muy bajo peso al nacer



Un grupo de 238 lactantes, pesando de 1000 at 1500g, y nacidos consecutivamente en un hospital entre 1966 y 1970, fueron integrados en un ensayo de control con el intento de determinar si los cuidados intensivos aplicados a ninos con muy bajo peso al nacer (PMBN) afectan a la supervivencia a largo plazo y a la incidencia de minusvalidos graves. Los ninos fueron incluidos en uno de dos grupos: con cuidados intensivos o con tratamiento rutinario. Se describen con detalle los metodos de tratamiento de rutina e intensivo. Todos los ninos con PMBN recibieron los mismos cuidados basicos de enfermeria.



Los 160 ninos dados de alta estan siendo revisados hasta los ocho anos de edad por un equipo multidisciplinario. Dos de los ninos fallecieron, uno de forma inesperada y otro por un defecto congenito.



Los lactantes con distress respiratorio que fueron tratados intensivamente en la ultima parte del estudio tuvieron un margen de supervivencia mayor y, las posibles razones de ello son objeto de discusion. El estudio muestra tambien que la muerte inesperada de un lactante con PMBN despues de dado de alta no es hoy en dia un hecho corriente.

A longitudinal study of very low-birthweight infants. I: study design and mortality rates.

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A Longitudinal Study of Very Low‐birthweight Infants. IV: An Overview of Performance at Eight Years of Age

Longitudinal study of very low birthweight infants: impairments, health and distance growth to 14 years of age.

A longitudinal study of very low-birthweight infants. I: study design and mortality rates.