We sought to examine the health status of 8 year old ELBW children from the perspective of the children and their parents. Our results reveal very little agreement between the self-reports of the children and the proxy reports of their parents with children reporting less comfort and resilience than their parents but better achievement. Despite higher rates of asthma and cognitive and neurosensory impairments, 8-year old ELBW children view their health and well being similar to that of NBW controls. Parents of the ELBW children reporting significantly poorer health for their children than parents of NBW children, specifically poorer satisfaction with health, comfort and achievement and less risk avoidance. The majority of findings were similar when ELBW children with neurosensory impairments were excluded.
This is the first report of the self assessed health and well-being of preterm children prior to adolescence. Previous information has relied on parents acting as proxies for their children with findings similar to our parent reports.1–3
The self-reports of our ELBW children are in agreement with studies of adolescent preterm children which indicate very few difference between the children’s perceptions of their health and that of NBW term controls.8–10
Our findings of poor agreement between parents and their 8 year old ELBW children concerning their health are similar to results obtained in the study of the original CHIP-CE normative sample of children where parent–child reports were poorly to modestly correlated.20,21,30
Poor parent–child agreement has also been documented in other normative populations using a variety of questionnaires including the European KIDSSCREEN-52 questionnaire.31
Among British children the highest agreement between parents and children pertained to visible and diagnosed conditions and the lowest agreement to emotional symptoms such as sadness and anxiety.7
Stronger correlations between parent and child reports ranging from 0.44 to 0.61 were found among Dutch children.32
Upton reviewed the 1996–2006 literature and concluded that parents of healthy children tended to report higher health related quality of life for their children than the children themselves whereas the assessments of parents of children with chronic illness were lower than those of their children.6
Our findings of poorer parent reported satisfaction with health and achievement for their ELBW children than the children themselves are in agreement with these findings. Ingerski also found that parents of children with chronic conditions reported poorer physical, emotional and social functioning but, in contrast to our findings, better school functioning than their children.33
Achenbach reported low parent child correlations (0.22) for behavioral ratings with children reporting more internal and subjective symptoms and adults more objective behavioral symptoms.4
In contrast Saigal reported agreement between parents and their adolescent children with the only differences pertaining to sensation and cognition.34
Many factors influence response to questionnaires. Parent reports may be influenced by their level of education and sociodemographic status as well as by their own health35
, their child care-giving burden and the child’s health status.36–38
Children’s reports are influenced by their age, gender, health and cognitive level as well as their social experience.39,40
Our study population was restricted to ELBW children capable of responding to the CHIP-CE questionnaire, thus excluding the severely impaired children. Parents may have reported even poorer satisfaction with health and achievement for their ELBW children had such children been included.
The predominant effect of SES on the health status of children has been well described.29,41
We used a composite of maternal education and family income as a measure of SES and found a significant effect of SES on both parent and child reports of most of the health measures with higher SES associated with better health. Starfield similarly reported significant social class differences in parent reported domains of health, with the exception of Satisfaction, but contrary to our findings, the effects of SES were not significant according to the child report.29
A significant effect of maternal education on the self reported health of European children has however been reported, supporting our findings of an effect of SES on child reported health status.41
We found a significant association of black race with less Comfort and Risk avoidance. Poorer health status has been reported among black low birth weight children.38,42
Cultural differences in responding to questionnaires, rather than poverty, may play a role in our population as the racial differences were evident even after adjusting for SES in the multivariable analyses. Gender differences were also apparent in our population which might be related to gender differences in responding to questionnaires.
Limitations of the study include that he children were born in the early to mid 1990’s, a period of increased survival, but also of increased neonatal morbidity which has decreased since the year 2000.43,44
The findings might thus not reflect current outcomes. Ours is a predominantly urban population and might not be representative ofother regions.
This is to our knowledge the first report of the school-age health of preterm children prior to adolescence who have survived since the 1990’s. Strengths of the study include our measure of health status, the CHIP-CE, which provides a comprehensive, multidimensional assessment of health. Although different, the perspectives of both the children and their parents present equally valid perceptions of the functioning and well being of the child with each providing complementary information. Parents and children may use different standards to appraise health and well being. Furthermore parents may not be aware of subjective symptoms among their children such as sadness, loneliness and anxiety.45
This is evident in our population where the children reported less Comfort, which includes emotional comfort, and less Resilience, which includes family involvement, than their parents. The child’s perspective is thus important when making health decisions and to identify such aspects of their emotional and social lives that parents may not be aware of and that may possibly be improved with interventions. The parents’ perspective also has importance because parents control most aspects of the child’s life including their referral to and utilization of health care. Furthermore both parent and child reports of health and well being predict current and future health care needs and service use and are increasingly viewed as primary and secondary end points of health care.25,26
In conclusion, the findings of this study stress the importance of considering the self perception of the health status of preterm children when assisting them with any educational and social difficulties they may have. Longitudinal follow up of this cohort will be important in order to examine possible changes in parent and child perception of health which may become evident during adolescence.