Chronic Conditions, Functional Limitations, and Special Health Care Needs in 10- to 12-Year-Old Children Born at 23 to 25 Weeks' Gestation in the 1990s: A Swedish National Prospective Follow-up Study
BACKGROUND. Children born extremely immature (gestational age <26 weeks' gestation) increasingly reach school age. Information on their overall functioning and special health care needs is necessary to plan for their medical and educational services. This study was undertaken to examine neurosensory, medical, and developmental conditions together with functional limitations and special health care needs of extremely immature children compared with control subjects born at term.
METHODS. We studied 11-year-old children born before 26 completed weeks of gestation in all of Sweden from 1990 through 1992. All had been evaluated at 36 months' corrected age. Identification of children with chronic conditions lasting ≥12 months was based on a questionnaire administered to parents. Neurosensory impairments were identified by reviewing health records. Information regarding other specific medical diagnoses and developmental disabilities was obtained by standard parent and teacher questionnaires.
RESULTS. Of 89 eligible children, 86 (97%) were studied at a mean age of 11 years. An equal number of children born at term served as controls. Logistic-regression analyses adjusting for social risk factors and gender showed that significantly more extremely immature children than controls had chronic conditions, including functional limitations (64% vs 11%, respectively), compensatory dependency needs (59% vs 25%), and services above those routinely required by children (67% vs 22%). Specific diagnoses or disabilities with higher rates in extremely immature children than in controls included neurosensory impairment (15% vs 2%), asthma (20% vs 6%), poor motor skills of >2 SDs above the mean (26% vs 3%), poor visual perception of >2 SDs above the mean (21% vs 4%), poor learning skills of >2 SDs above the mean (27% vs 3%), poor adaptive functioning with T scores of <40 (42% vs 9%), and poor academic performance with T score <40 (49% vs 7%).
CONCLUSIONS. Children born extremely immature have significantly greater health problems and special health care needs at 11 years of age. However, few children have severe impairments that curtail major activities of daily living.
Significant advances in perinatal and neonatal care during the1990s resulted in increased survival of extremely immature (EI) infants born at <26 weeks' gestation.1–5 This increase in survival has not been accompanied by a decrease in the prevalence rates of neonatal complications and early childhood disability, which remain high.5–8 Studies of school-age outcomes in infants with an extremely low birth weight (ELBW; birth weight < 1000 g) who were born in the1980s indicated that these children had a substantially high prevalence of low-severity neuropsychological deficits, behavioral problems, and school difficulties.9–12 Except for 1 report from the United States,13 information on school-age outcomes in ELBW infants born in the 1990s is mainly restricted to neurobehavioral and developmental status.14,15 There is little information on how these children function at school age or on their health care needs.
As part of an ongoing longitudinal investigation we examined comprehensive health outcomes in a Swedish national cohort of 11-year-old EI children born in the1990s. The outcomes are reported as functional limitations and special health care needs in combination with more traditional measures such as neurologic status, developmental problems, and adaptive functioning at school. Our aim was to obtain a more clear understanding of the functional capacities of these vulnerable children and the possibilities of ameliorative interventions as a basis for planning for and provision of services for this growing population.
For the Swedish national study, data were collected prospectively on all ELBW infants (gestational age ≥ 23 weeks and birth weight < 1000 g) who were born from March 1990 through April 1992 in the whole of Sweden. A total of 633 ELBW infants were born alive, and 370 (63%) survived to discharge home (Fig 1). The short-term outcome and 3-year follow-up in these children have been described previously.16,17 Of these 633 ELBW infants, 247 were born at <26 completed weeks' gestation (EI), 89 (36%) of whom survived through the neonatal period (all of whom were known to be alive at 3 years of age). These 89 EI children were identified and alive at the age of 11 years and were eligible for our study. The database generated from the previous studies in this longitudinal investigation was established at the national epidemiologic center of the Swedish National Board of Health and Welfare. Permission was obtained to access the database. The names and addresses of the EI children and their families, including those who had moved abroad, were traced from the Swedish national tax board, where we also confirmed that the child was alive at the time of this assessment. A letter was then sent to the pediatrician who was caring for the EI child to ask if he or she thought it appropriate for the family to be contacted. Three families who had moved to other countries were traced and approached. Once the family was located and with the pediatrician's permission, the research nurse wrote to the parents requesting their written permission to send questionnaires to the child's school teacher and the parents themselves. Parents of EI children were also asked for permission to review the pediatric case records and records from other specialist health services to identify neurosensory impairment (NSI). In the case of the controls, if the parents reported that their child had been seen by specialist services, we asked their permission to approach these specialists for additional information. Once the EI and control families had given written permission to participate in the study, they were contacted by the research nurse, who explained the procedures in filling out the questionnaires. With the permission of the parents, questionnaires were sent to the child's class teacher, enclosing a letter with the relevant instructions for filling out the questionnaires. Questionnaires from all respondents were returned to the study coordinator at the University of Umeå. Two reminders were sent to nonrespondents, and when possible, an approach was also made by telephone. Missing data from the returned questionnaire were followed up in the same way.
The control group was recruited for this assessment from the national birth register by selecting a term, normal birth weight child who was born at the same hospital, of the same gender, and nearest in birth date (±7 days) to the EI child. We identified 3 control participants for every index child. Because we aimed to have 1 control for every EI child, we initially contacted the first of the control families. If the family did not respond or refused to participate, we then approached the second family and, if necessary, the third family. Recruiting the control families was a slow process, which resulted in a control group that was, on average, 8 months older than the EI children. The control group was approached and examined in the same way as the study population.
Measures (11-Year Study Protocol)
As part of an overall assessment of health, growth, functioning, neuropsychological outcome, and school performance, questionnaires concerning all the children were sent to the parents and teachers. The Questionnaire for Identifying Children With Chronic Conditions (QuICCC) was administered to a parent or primary caregiver, usually the mother.18 Interviews were conducted by Dr Farooqi. Sixty-two percent of the parents of the EI children and 24% of those of the control participants were interviewed in their homes, whereas 23% and 21%, respectively, were interviewed at the pediatric research center of Umeå University Hospital. The interviews with the remaining parents in the 2 groups were conducted by telephone. The QuICCC incorporates the consequences of chronic health conditions that have a physical, psychological, or cognitive basis and have lasted or are expected to last for ≥12 months. It has 39 question sequences divided into 3 domains: functional limitations, with 16 items concerning physical, emotional, cognitive, and social development; dependence on compensatory aids, which has 12 items regarding use of medications, special diet, assistive devices at home or at school, and personal assistance; and need for services above those routinely needed by the children, which has 11 items concerning medical, psychological, and educational services and special treatments and arrangements at school or at home. Most questions in the QuICCC have multiple parts. The first part of each question sequence concerns ≥1 specific consequences of having a chronic health condition. If the respondent reports that a child experiences the consequence, the interviewer moves to the second level of the sequence, which asks whether the consequence is the result of a medical, behavioral, or other health condition. If the second part of the question elicits an affirmative response, the interviewer proceeds to the final part of the question, which applies to the duration (or expected duration) criterion of ≥12 months. To be identified as having a chronic condition, a child must qualify in each component of at least 1 question sequence.19 We asked the parents about additional details of the reported conditions and therapies that were provided. Detailed interviews were conducted, and if the need arose, we had ≥1 or more follow-up interviews with the families during the study period. We did not use the item pertaining to an individual educational plan in the domain of service above routine because it was not applicable to the Swedish school system. However, all children with special educational arrangements were encompassed by other relevant items in the QuICCC, such as “special arrangements in school” and “full-time special class instructions or special schools.” In the functional-limitation domain, we added 1 sequence in the final part of the item “physical delay” by asking whether the children ever had serious growth delay; however, we also maintained the original algorithm of the item. In the domain of compensatory dependency we added an item by asking whether the child uses prescription glasses. The QuICCC was not validated before use.
The Nordic Health and Family Questionnaire20 includes items that identify and measure the severity of children's chronic medical, behavioral, or other psychiatric conditions. There are 14 items that identify specific health conditions that have been diagnosed by a medical specialist or child psychologist. There is also an open question about any other specific health condition. Respondents were instructed to check the answer only if the condition had persisted or was expected to last for a period of ≥12 months. A positive response was categorized as mild, moderate, or severe. The Nordic Health and Family Questionnaire also includes socioeconomic variables such as parent's educational level, family's disposable income, and family structure. The mother's education was classified into 3 groups: >12, 10–12, and ≤9 years. The cutoff point for high/low education was the last group and the others. The family's disposable income was classified into 6 groups. The cutoff point for high/low-income groups was between the 2 highest groups and the others. The family structure was defined as a 1- or 2-parent family. Any social risk was defined as single-parent family, mother's educational level ≤9 years, or low family income. In the analysis, social risk factors were studied separately or as a single categorical variable (ie, any social risk versus none). The Nordic Health and Family Questionnaire includes 3 satisfaction measures regarding the perceived quality of care provided by the health care system. These items consist of responses to questions such as (1) quality of medical care provided, (2) professional support to the family and children in need both at school and otherwise, and (3) extra out-of-pocket expenditure incurred on parents as a result of children's health problems. The questions concerning satisfaction measures have 5 graded alternatives from “not at all satisfied” to “very satisfied.” The cutoff point was between “neither satisfied nor dissatisfied” and “dissatisfied.”
Motor skills, visual perception, and learning skills were assessed with Five to Fifteen, a parent questionnaire for the assessment of attention-deficit/hyperactivity disorders and comorbid conditions.21 The Five to Fifteen questionnaire comprises 181 items that are organized into 8 domains (motor skills, executive functions, memory, learning, language, perception, social skills, and emotional/behavioral problems). The motor-skills domain consists of 17 items, 7 in gross and 10 in fine motor skills. The visual-perception domain assesses responses to 8 items related to visual perception and perception of space and surroundings. The learning-skills domain assesses responses to 28 items related to the child's learning ability in school subjects such as math, reading, and writing and responses to the items assessing daily learning ability and coping in learning. All items are scored as 0 (does not apply), 1 (applies sometimes/to some extent), or 2 (applies definitely). For each domain a mean score of 0 to 2 was calculated. We converted mean domain scores to z scores (SD scores) in relation to the Swedish age- and gender-specific reference population. This questionnaire has been validated, and norms for the Swedish population have been established.21,22 Impairments in motor skills, visual perception, and learning skills were defined in terms of SD scores that were either 2 or 3 SDs above the normative mean, corresponding to moderate (92nd–95th percentile) and severe (>98th percentile) difficulties, respectively. Assessment of academic performance and adaptive functioning at school was based on Achenbach's teacher-report form.23 The raw scores in academic performance and the sum of 4 adaptive characteristics were converted to T scores. Poor academic skills and poor adaptive functioning at school were defined as follows: difficulties in the borderline clinical range, T score of 37–40 (10th–16th percentiles); difficulties in the clinical range, T scores of <37 (<10th percentile).
NSIs in our assessment were identified and characterized by reviewing pediatric and school health records for all EI children and for those control participants whose parents reported that their child had been treated for such impairments. Records from other specialist health services such as habilitation or eye-rehabilitation centers were reviewed for those EI and control participants whose parents reported at the present assessment that their child had received care from these health services. Cerebral palsy (CP) was classified as hemiplegia, diplegia, or quadriplegia. CP was also categorized functionally as mild (no evidence of clinically important functional difficulty related to gait or use of hands), moderate (independent walking but with an abnormal gait), or disabling (not walking, severe motor disability). Severe visual impairment was defined as unilateral or bilateral blindness or visual acuity <20/200 without glasses in at least 1 eye, and hearing disability included those with sensorineural defects requiring hearing aids. Formal psychometric tests were not conducted but had been performed in all children who were receiving full-time special education (EI: 13; control: 4). Major disability was defined as moderate or disabling CP, severe visual impairment including unilateral or bilateral blindness, sensorineural disability requiring a hearing aid, or need for full-time special education in a special school as a measure of severe mental retardation.
Data were collected on standardized forms and encoded for computerized analysis with the use of SPSS 13.0 for Windows (SPSS Inc, Chicago, IL). The assessment data for each EI child were examined before they were combined with the data set from 2 previous main studies16,17 for analysis. Descriptive statistics such as frequency distributions, means, and SDs were used. Continuous outcome measures were compared by unpaired t tests to test the differences between means. Differences in dichotomous outcomes between the groups were analyzed with the χ2 or Fisher's exact test with odds ratios (ORs) and 95% confidence intervals (CIs) when appropriate. Multivariate logistic-regression analyses were performed to examine the differences in dichotomous outcomes between the groups for all measures of functional limitations, compensatory dependency, and service use above routine, when appropriate. Social risk and gender were included as covariates. As measures of socioeconomic status, we analyzed social risk factors such as single-parent family, low income, or mother's education ≤9 years separately and as a single categorical variable (ie, any social risk versus none). We repeated the analyses to compare the outcomes of the EI children and controls who had no NSI. The study was approved by the regional ethical review board at Umeå University.
Sociodemographic and Birth Data
All 89 children in the EI cohort had been assessed in their neonatal period and at 3 years of age.16,17 At the time of our study 1 child had emigrated and was lost to follow-up, and 2 families refused to participate. Thus, 86 children (97%) remained for assessment (mean age: 10.9 years; SD: 0.76 year) (Fig 1). Of the 3 nonparticipating children, 1 had a significant NSI and the other 2 had no disability, with a normal neurosensory and growth outcome at 3 years of age.17 Sociodemographic characteristics collected at the time of our assessment, including years of maternal education, single-parent families, and social class, were similar in the 2 groups (Table 1). One child in each group was in foster care. In the EI cohort, 80 infants (92%) were born at tertiary care centers; 26 (32%) of their mothers received antenatal corticosteroids, and 22 infants (26%) were treated with surfactant. The EI children had a mean birth weight of 765 g (SD: 111 g) and a mean gestational age of 24.6 weeks (SD: 0.7 week). Eight percent of the EI children were small for gestational age,24 and 17% were from multiple births. Thirty-three children (38%) were oxygen dependant at 36 weeks' corrected age, 23 (27%) had severe (stage ≥3) retinopathy of prematurity, and 12 (14%) had either grade 3 or 4 intraventricular hemorrhage, periventricular leukomalacia, or both at discharge home. The control participants were, on average, 8 months older than the EI cohort. The assessment regarding functioning and special health care needs would not be expected to change in relation to this small age difference.
Specific Diagnoses and Disabilities
Table 2 summarizes abnormal neurosensory outcomes and other medical or psychiatric conditions.
At 11 years of age, 13 children (15%) in the EI cohort exhibited 1 or more NSIs: 5 had CP, 10 had severe visual impairment, and 5 required hearing aids. In contrast, 2 children in the control group had NSIs. Of the 5 (6%) children diagnosed with CP, 3 were not walking (disabling CP), and another 2 were walking independently (1 with an abnormal gait and the other, with mild CP, with normal gait). Of the 3 children with disabling CP, 2 had quadriplegia and 1 had spastic diplegia. These 3 children with disabling CP were severely handicapped, and they had profound mental retardation (IQ < 50). In the remaining 2 children with ambulatory CP, 1 had diplegia and the other had hemiplegia. Ten (12%) children in the EI group had either unilateral blindness or severe visual impairment. Four children had unilateral blindness. The cause of the unilateral blindness in 1 child was related to Candida ophthalmitis in the neonatal period. All EI children with severe visual impairment or unilateral blindness, except 1, were treated for retinopathy of prematurity in the neonatal period. One child in the control group had visual impairment caused by Rieger's anomaly. Thirteen EI children (15%) and 4 control participants (5%) were receiving full-time special education. The overall prevalence of at least 1 major disability (moderate or disabling CP, severe visual impairment, hearing disability requiring aids, or receiving full-time special education) was 21% (18 of 86) in the EI children and 6% (5 of 86) in the control participants (P = .006).
The EI children had significantly higher overall rates of NSIs and medical and psychiatric disorders than the control participants (EI, 45%; controls, 22%; P = .002) (Table 2). The difference was mainly attributable to NSI, asthma, and chronic constipation. Moderate-to-severe constipation was found mainly in children with NSIs and in those with subnormal cognition. Significantly higher rates were found in the EI cohort than in the controls for poor motor skills (26% vs 3%; P < .001), impaired visual perception (21% vs 4%; P < .001), poor learning skills (27% vs 3%; P < .001), poor adaptive functioning at school (42% vs 9%; P < .001), and poor academic performance (49% vs 7%; P < .001) (Table 3). These group differences remained significant in children without NSI. A significantly higher proportion of the families of EI children expressed their dissatisfaction with the professional support and/or reported out-of-pocket expenditures incurred because of their child's health problem (EI, 23%; control, 5%; P < .05).
Consequences of Chronic Conditions
Compared with the term controls, the EI cohort had significantly higher rates of functional limitations (Table 4). These limitations included mental or emotional delay, blindness or difficulty in seeing, need to reduce time and effort in physical activities, physical delay, restriction in activities, and trouble understanding simple instructions. Except for the restriction in activities, these differences remained significant when children with NSIs were excluded. Twenty-three (27%) of the EI children were experiencing difficulty in seeing despite using prescription glasses. Of these, 9 children were diagnosed as having cortical visual impairment. They were wearing glasses because of concomitant eye problems such as strabismus (n = 4) and refractory errors (n = 5). Twenty-one EI children, compared with 4 in the control group, needed to reduce their time or effort in activities. Of these, 7 tired easily because of poor motor skills and poor coordination, 4 reported CP as the reason, 6 reported visual problems, 3 reported attention-deficit/hyperactivity problems, and 1 reported deafness caused by Treacher Collins syndrome. The overall rate of 1 or more functional limitations was significantly higher in the EI cohort (EI, 64%; control, 11%; P < .001). After exclusion of children with NSIs in the 2 cohorts, the corresponding rate in the EI children was still significantly higher than in the controls (58% vs 9%; P < .001). The most common functional limitation in EI children with or without NSIs was mental or emotional delay. Severe functional limitations such as difficulty with feeding, dressing, washing, being blind, or unable to walk were restricted to EI children (n = 4) with NSIs. In children with functional limitations, the mean number per child was 3.4 (SD: 3.5; range: 1–16) for the EI cohort, 2.3 (SD: 1.4; range: 1–7) for the NSI-free EI subgroup, and 2.4 (SD: 1.6; range: 1–6) for the control group (P = .42 for EI versus control group and P = .39 for the EI and control subgroups without NSIs).
Compared with the control cohort, the EI children had a significantly greater need for assistive devices or personal help to minimize or compensate for their functional limitations (Table 5). The most common compensatory need in EI children was the use of prescription glasses. The rates of medication use in the EI and control cohorts, respectively, were 17% vs 6% for asthma, 7% vs 4% for attention-deficit/hyperactivity disorder, 4% vs 8% for allergic disorders, 4% vs 1% for epilepsy, and 5% vs 1% for constipation. Four percent of the EI children were treated with growth hormone. The use of a wheelchair and need for other special equipment to help with walking, feeding, toileting, or bathing were restricted to 4 EI children with NSIs. Overall, 59% of all EI children, 52% of the NSI-free EI subgroup, and 25% of the control participants had 1 or more compensatory dependence needs. For those children with compensatory needs, the mean number of such needs per child was 2.2 (SD: 2.3; range: 1–11) in the EI cohort, 1.5 (SD: 0.8; range: 1–4) in the NSI-free EI subgroup, and 1.5 (SD: 1.2; range: 1–5) in the control group (P = .05 for EI versus control and P < .05 for the EI and control subgroups without NSIs).
Service Use Above Routine
Compared with the control children, the EI children had a significantly greater need for services above routine (Table 6). These services included visiting a physician regularly for a chronic condition, physical or occupational therapy, nursing care and medical procedures, full-time special education in special schools or special classes attached to the mainstream schools, and a need for special arrangements at school. When the NSI-free children in the 2 groups were analyzed separately, the difference remained significant in only 2 outcomes (receiving physical or occupational therapy and special arrangements at school). Overall, 67% of all EI children, 63% of the NSI-free EI subgroup, and 22% of the control group received 1 or more services above routine. Fifty (58%) EI children had special arrangements at school, and 13 (15%) received full-time special education in special schools or classes, whereas the corresponding rates among the control participants were 10% (n = 9) and 5% (n = 4), respectively. Of the 13 EI children (15%) receiving full-time special education, 8 (62%) had 1 or more NSIs. Of the remaining 5 EI children receiving full-time special education who had no NSIs, all were in special schools because of severe learning and behavioral problems. Five percent (n = 4) of children in the control group were placed in the special school because of severe learning and behavioral problems. In 5 EI children medical procedures were performed because of a chronic condition related to CP (n = 4) or a renal problem (n = 1). Of these 5 children, 3 required regular nursing care, which included tube feeding, care of a tracheotomy, and other help related to CP. In the control group 1 child had had heart surgery for an atrial septal defect. In children requiring services above routine, the mean number of such services received per child was 2.4 (SD: 1.8; range: 1–8) for the EI cohort, 1.7 (SD: 1.5; range: 1–6) in the NSI-free EI subgroup, and 1.8 (SD: 1.2; range: 1–6) in the control group (P = .03 for EI versus control group and P = .13 for the EI and control subgroups without NSI).
In logistic-regression analyses adjusting for social risk factors and gender, EI children had significantly more chronic conditions in all 3 domains of the QuICCC than control participants. These differences remained significant when the 13 EI children and 2 control participants with NSIs were excluded from the analyses (see Tables 4–6). In the analyses of the total population including children with NSIs, boys showed an increased risk for any functional limitation (OR: 2.3; 95% CI: 1.1–4.7) and mental delay (OR: 2.4; 95% CI: 1.05–5.5). Social risk was significantly related to 3 outcomes, namely, any functional limitation (OR: 2.7; 95% CI: 1.2–6.2), mental delay (OR: 3.1; 95% CI: 1.3–7.1), and receiving full-time special education (OR: 4.6; 95% CI: 1.6–13.4).
Rates of Chronic Conditions in the Multiple Domains
Overall, 81% of the EI children and 33% of the control participants were identified as having a chronic condition in 1 of the 3 domains of the QuICCC. These rates in the groups without NSIs were 80% vs 32%, respectively (P < .001). Thirty percent of the EI children and 3% of the controls had a chronic condition in all 3 domains of the QuICCC (P < .001). In the NSI-free children, these rates were 16% and 1%, respectively (P < .001). In a subanalysis, in which the outcomes in EI children were compared with respect to gestational-age category, no significant differences in rates were found in an any of the 3 QuICCC domains between children born at 23 to 24 weeks (n = 28) and those born at 25 weeks (n = 58) (93% vs 78%, respectively; P = .1).
We report the impact of extreme prematurity on subsequent childhood health and well-being seen comprehensively as the ability to participate in developmentally appropriate physical, behavioral, and social tasks and as the need for special health care compared with “normal” peers. To our knowledge, this is the first study to report school-age outcomes in children born in the 1990s at extremely low gestational ages (<26 weeks). Our prospective follow-up study is based on a combination of the parents' perception of their children's health, information obtained from the school, health records, and records from other specialist health services. We have used validated but relatively inexpensive methods of assessing outcomes, with a focus on the views of parents and teachers regarding the children's functional level and integration at school and their family and social life. This probably represents the true state of the child's overall functioning and health care needs.25,26 Additional notable strengths of this study are the national composition of the cohort, the prospective follow-up, a high follow-up rate of 97%, and inclusion of a matched group of children who were born in the same hospital and nearest in time to the EI children. The issue of selection of an appropriate comparison group has not been fully resolved. Many studies have used classroom control groups from mainstream schools to represent a relatively healthy group. The nature of such control groups, however, may overestimate the differences in preterm children, especially in the frequency of cognitive deficits and school difficulties. Possible weaknesses include a relatively small sample size and lack of psychometric testing, except for those tests already performed on children who attend special schools or receive full-time special class instructions. Psychometric testing would have been useful in understanding the pathophysiological causes related to the specific defects. However, the principal aim of this study was to address the issue of functional limitations and health care needs of these school-aged children imposed by the specific deficits.
There are few reports on outcomes at school age among children born extremely preterm in the1990s. With the exception of 1 study from the United States,13 the outcomes in extremely preterm children born in the 1990s and studied at school age pertain mainly to behavioral and neurodevelopmental disabilities.14,15 Information is lacking on other aspects of health such as daily functioning and special health care needs. In conformity with our findings, these studies13–15 report highly significant differences between children born at extremely preterm gestational ages and control populations.
The rate of major disability (1 or more) in our EI cohort was significantly higher than that in the control participants. Several investigators have reported rates of sensorineural disabilities in regional or national cohorts of very preterm infants born in the 1990s. Doyle27 reported that 29% (22 of 77) of survivors who were born at 23 to 25 weeks' gestation had a major disability, a rate similar to that of 21% (18 of 86) in our study. More recently, Marlow et al15 reported that 22% of survivors (53 of 241) had a severe disability at 6 years of age, a rate again similar to the rate of major disability in our study. Direct comparisons are rendered difficult, however, by the fact that the disabilities are not defined identically in all studies and that the ages at assessment vary. Another important limitation in comparing our data with those in other studies is, as mentioned above, the lack of psychometric testing on all children in our EI cohort. Instead, we used the need for full-time special education as a measure of significant cognitive deficits.
In addition to NSIs, asthma played a significant role in determining special health care needs in our EI children. Similar findings have been reported by others,13,28–30 but in those studies more-mature children with a higher median gestational age were assessed. In our EI population, 13% had moderate-to-severe constipation. This was mostly noted in the children with NSIs and those with mental delay or behavioral problems. Similar observations were made by Hack et al28 in their 11-year-old cohort of children born at <750 g.
As did Hack et al,13,28 we administered the QuICCC to the children's parents with the aim of identifying children with special health care needs. The use of the noncategorical approach (independent of diagnosis) is important when studying the outcomes in survivors of neonatal intensive care, because it allows assessment of the impact of multiple chronic morbidities on day-to-day functioning and of special health care needs. Children identified in the QuICCC fit the definition of children with health care needs (have or are at risk of having physical, developmental, behavioral, or emotional conditions that require health care services of a type or amount beyond those required by children in general). In the United States this method has been used to identify chronic conditions and planning federal aid and services for children with special health care needs.31 The QuICCC also comprises most of the elements of the World Health Organization's international classification of functioning and disability, which includes limitations in body/structure, personal activity, participation in society, and environmental facilitation.32–34
Few studies have addressed the functional limitations and special health care needs of preterm or ELBW children.13,28–30 In conformity with those studies we found that, compared with the control participants, our EI children as a group had a significantly higher prevalence of functional limitations such as mental or emotional delay, visual difficulties, restriction in daily activities, and reduced self-care abilities. Our findings of functional limitations and special health care needs in the EI cohort are comparable with those observed in a recent study by Hack et al13 of an ELBW cohort born in the mid-1990s. They used the same instrument we did for our study (QuICCC). For their ELBW cohort they found an OR of 7.0 (95% CI: 3.3–14.8) for mental or emotional delay and 7.4 (95% CI: 4.3–12.8) for special arrangements at school. Very similar observations were made by the same group in an earlier study,28 using the same QuICCC instrument, concerning chronic conditions in 11-year-old children born in the mid-1980s with birth weights <750g. Those children had an OR of 4.7 (95% CI: 2.0–11) for mental or emotional delay and of 9.5 (95% CI: 2.1–43.6) for special arrangements at school. In our EI cohort, the prevalence of a chronic condition in any of the domains of the QuICCC was 81% in the total population and 80% in the NSI-free subgroup. Again, these findings are comparable with those in the study by Hack et al,13 who reported rates of 76% and 72% in their total ELBW cohort and their cohort without NSIs, respectively.
In our control children, the rate of chronic conditions identified by the QuICCC was slightly higher than the 15% to 30% rate found in other studies either in the United States with use of the same instrument18,35,36 or in Scandinavian countries with use of different methods and definitions.37,38 One possible explanation could be the inclusion of children with borderline consequences of a chronic condition such as need for a special diet, prescription of glasses for correction of vision, or allergy medication and life-threatening allergies. Rates of disabilities have continued to rise during the past 20 years, as reported from the majority of studies in Scandinavian countries37–39 and elsewhere.40 All these factors could have contributed to the high rates of chronic conditions in our control population.
In Sweden, children born at <26 weeks' gestation constitute <0.2% of all births and represent a very small fraction of all children with special health care needs. Although such special needs were significantly higher than in those of the controls, very few children had impairments so severe as to prevent them from carrying out their major daily activities such as eating, bathing, and dressing or from school attendance. This finding is in line with those in the 2 other studies that have addressed the health status and special health care needs in school-aged ELBW children.28,29 Saigal et al41 and Dinesen and Greisen42 have demonstrated that although adolescents born at extremely low gestational ages accurately characterize themselves as having more health problems and learning difficulties than their normal birth weight peers, their self-rating of their health-related quality of life is the same or even higher than that of such peers.
Despite the universal health care coverage in Sweden, a significantly higher percentage of parents of EI children compared with controls expressed their dissatisfaction with the health care system in Sweden in this study. The 2 main areas in which parents expressed their dissatisfaction were professional support rendered to the EI children and their families, especially in school-based services, and out-of-pocket expenditure incurred by the parents. Thus, in addition to the emotional burden and the family stress caused by the chronic illness of the child, parents of the EI children expressed their unmet needs related to the special health care and other supportive services, especially at school.
Although there has been a dramatic increase in the survival rate of extremely premature infants, the rates of neonatal and early childhood morbidity have not changed significantly over the same period of time.1,2,5 Our outcome data reflect perinatal practices of more than a decade ago, and the results may not be relevant to the preterm infants born now. In our EI cohort, only one third of the mothers received antenatal steroids, and one fourth of the EI infants were given surfactant. These management practices have since changed considerably. Currently, the majority of mothers delivering EI infants receive antenatal steroids, and surfactant is administered to most of the EI infants in Sweden and elsewhere.1,3 However, our study provides the most accurate data available on the likely rates of neurosensory disability, functional limitations, and special health care needs until superseded by more recent data. Similar to Hack et al,13 we combined assessment of functional limitations and special health care needs with traditional measures of neurologic and developmental status. This should provide reliable information for use as a basis in the planning and provision of services for EI children, who are surviving in increasing numbers. It has been shown by others43–45 that the majority of the chronic conditions addressed in our study are a result of neonatal complications such as periventricular brain injury, retinopathy of prematurity, and chronic lung disease. We, like others,13,28 believe that research into therapies that prevent neonatal complications will contribute to improving the future outcomes of EI infants.
This study was financially supported by the Oskarfonden Foundation, the Sven Jerrings Fond Foundation, and the Swedish Medical Research Council.
We acknowledge gratefully the dedicated work by research nurse Margareta Bäckman (Umeå) and project assistant Nighat Farooqi (Umeå). We also thank Dr Hans Stenlund (Umeå) for providing statistical expertise. We thank the children and their parents for their cooperation.
- Accepted June 8, 2006.
- Address correspondence to Aijaz Farooqi, MD, Department of Pediatrics, University Hospital, SE-901 85 Umeå, Sweden. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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