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

. 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.

Growth and neurodevelopmental outcome of very low birth weight infants with intrauterine growth retardation: Comparison with control subjects matched by birth weight and gestational age

Amblyopia Preferred Practice Pattern

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

SUMMARY

Between 1966 and 1970, infants with birthweights between 1000 and 1500g entered a randomized controlled trial to determine the short-term and long-term results of neonatal intensive care. Of 158 long-term survivors, five were lost to follow-up, but the multidisciplinary research team prospectively followed 143 children up to the age of eight years. Useful data were available for the other 10 children. Of the long-term survivors 74 had received routine, and 84 had received intensive nursery care.



At eight years of age there were no statistically significant differences in the frequencies of a variety of individual abnormalities; fewer of the intensively managed children had cerebral palsy, but sensorineural deafness and ocular abnormalities occurred more frequently.



Individual children were graded into four carefully defined groups: (a) profound handicap (4-4 per cent of entire study group); (b) severe handicap (10-1 per cent); (c) significant handicap (37-3 per cent); and (d) trivial or no handicap (41-8 per cent). Inadequate data were available for 6-3 per cent of the children.



It was apparent that the improved survival attributed to intensive neonatal care was achieved at the expense of additional severely handicapped children, and this feature is discussed.



RESUME

Etude longitudinale des nourrissons de tres faible poids de naissance: II: Resultats d'une tentative controlee de soins intensifs et frequence des handicaps



Entre 1966 et 1970, des nourrissons d' un poids de naissance entre 1000 et 1500 g furent l'objet d'une tentative controlee pour determiner les resultats immediats et a long terme de soins intensifs neonataux. Sur 158 survivants a long terme, cinq ne purent etre suivis, mais l'equipe de recherche multidisciplinaire put suivre 143 enfants jusqua l'âge de huit ans. Des donnees utilisable existent pour les dix autres enfants. Parmi les survivants a long terme, 74 avaient beneficie d'un traitement de routine et 84 de soins intensifs perinataux.



A l'âge de huit ans, il n'y avait pas de diffErence significative dans la frequence des differentes varietes d'anomalies individuelles; le pourcentage d'infirmite motrice cere-brale etait plus faible dans le groupe de soins intensifs, mais la surdite centrale et les anomalies oculaires etaient plus frequentes.



Individuellement, les enfants furent regroupes en quatre groupes soigneusement definis: (a) handicap extreme (4,4 pour cent du groupe entier; (b) handicap severe (10,1 pour cent); (c) handicap reel (37,3 pour cent); et (d) handicap lEger ou nul (41,8 pour cent). Pour 6,3 pour cent des enfants, les donnees etaient inadequates.



II apparait done que l'amelioration de survie attribuee aux soins intensifs neonataux est obtenue aux depens d'un nombre accru d'enfants gravement handicapes; cette analyse est discutee.



ZUSAMMENFASSUNG

Eine Langzeitstudie an Kindern mit sehr niedrigem Geburtsgewicht. II: Ergebnisse einer kontrollierten Studie uber Intensivpflege und Haufigkeit von Defekten



In den Jahren von 1966 bis 1970 wurden Neugeborene mit einem Geburtsgewicht von 1000 bis 1500g in eine Kontrollstudie aufgenommen, um fruhe und spate Ergebnisse der neonatalen Intensivpflege beurteilen zu konnen. Von 158 Uberlebenden konnten funf nicht langfristig kontrolliert werden. Im Rahmen dieser multidisziplinaren prospektiven Studie wurden 143 Kinder bis zum Alter von acht Jahren nachuntersucht. Wichtige Daten liegen von weiteren zehn Kindern vor. Von den langfristig Uberlebenden waren 74 auf der allgemeinen Neugeborenenstation behandelt worden und 84 auf der Intensivpflegesta-tion.



Im Alter von acht Jahren fanden sich keine statistisch signifikanten Unterschiede im Hinblick auf die Haufigkeit einzelner Abnormitaten; von den Kindern der Intensivp-flegestation hatten weniger eine Cerebralparaese, dagegen waren sensorische Taubheit und okulare Misbildungen bei ihnen haufiger.



Die einzelnen Kinder wurden in vier sorgfaltig definierte Gruppen eingeteilt: (a) sehr schwere Behinderungen (4.4 Prozent der gesamten Studiengruppe); (b) schwere Behin-derungen (101 Prozent); (c) signifikante Behinderungen (37-3 Prozent); und (d) unbedeutende oder keine Behinderungen (41-8 Prozent). Von 6-3 Prozent der Kinder waren die Daten unzureichend.



Es war offensichtlich, das aufgrund der verbesserten Uberlebenschancen durch die neonatale Intensivpflege die Zahl der schwer behinderten Kinder ansteigt. Dieses Problem wird diskutiert.



RESUMEN

Estudio longitudinal de lactantes con peso de nacimiento muy bajo. II: Resultados de una prueba controlada de cuidado intensivo e incidencia de minusvalias.



una prueba controlada para determinar los resultados a corto y largo plazo de un cuidado



intensivo neonatal.



Entre 1966–1970 lactantes con bajo peso al nacer de 1000 a 1500 gr.fueron incluidos en



De 158 supervivientes a largo plazo, cinco se perdieron en el curso postnatal, pero el equipo multidisciplinario de investigacion siguio prospectivamente a 143 ninos hasta la edad de ocho anos. En otros diez ninos es posible obtener datos utiles. Dentro de los supervivientes a largo plazo, 74 recibieron un cuidado rutinario y 84 un cuidado intensivo de enfermeria.



A los ocho anos no habian diferencias estadisticamente significativas en la frecuencia de una variedad de anomalias individuales; eran mas pocos dentro de los cuidados intensivamente que presentaban paralisis cerebral pero eran mas frecuentes la sordera sensorioneural y las anomalias oculares.



Los ninos fueron individualmente agrupados en cuatro grupos cuidadosamente definidos: (a) minusvalia profunda (4,4 por ciento del grupo total); (b) minusvalia grave (10,1 por ciento); (c) minusvalia significativa (37,7 por ciento); y (d) alteracion banal o sin minusvalencia (41,8 por ciento). En un 6,3 por ciento de los ninos se obtuvieron datos no adecuados.



Quedo aparente que la majoria en la supervivencia atribuida a un cuidado neonatal intensivo se consiguio a expensas de la adicion de ninos gravemente minusvalentes. Se discute este hecho.

A longitudinal study of very low-birthweight infants. II: Results of controlled trial of intensive care and incidence of handicaps.

Data on growth patterns for a consecutive series of very low-birthweight infants followed to the age of eight years are presented. Of 158 long-term survivors who weighed between 1000 and 1500g at birth, reliable information on physical growth is available for 145 children. At birth 19.6 per cent of the sample were small for gestational age, but by eight years only 7.6 per cent remained below the 10th percentile for weight. Similar patterns were noted for length and for head circumference. Correlations between perinatal variables and postnatal growth were ascertained. The most important positive correlations were the percentiles at birth for weight, height and head circumference, maternal height and the use of neonatal intensive care. Gestational age had a negative correlation. There were 14 factors, including social class and most perinatal complications, which were not correlated with subsequent physical growth. Very low-birthweight babies, even if small for dates, had good prospects of satisfactory growth to the age of eight years.

A longitudinal study of very low-birthweight infants. III: Distance growth at eight years of age.

A Longitudinal Study of Very Low-Birthweight Infants. II: Results of Controlled Trial of Intensive Care and Incidence of Handicaps

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

A longitudinal study of very low-birthweight infants. II: Results of controlled trial of intensive care and incidence of handicaps.

A longitudinal study of very low-birthweight infants. III: Distance growth at eight years of age.

A Longitudinal Study of Very Low-Birthweight Infants. II: Results of Controlled Trial of Intensive Care and Incidence of Handicaps