Barbara Stoskopf

Self-Perceived Health-Related Quality of Life of Former Extremely Low Birth Weight Infants at Young Adulthood

OBJECTIVES. The goals were to compare the self-reported, health-related quality of life of former extremely low birth weight and normal birth weight infants at young adulthood and to determine whether there were any changes over time. METHODS. A prospective, longitudinal, population-based study with concurrent control subjects was performed. We interviewed 143 of 166 extremely low birth weight survivors (birth weight: 501–1000 g; 1977–1982 births) and 130 of 145 sociodemographically comparable, normal birth weight, reference subjects. Neurosensory impairments were present for 27% extremely low birth weight and 2% normal birth weight young adults. Health Utilities Index 2 was used to assess health status, and standard gamble technique was used to measure directly the self-reported, health-related, quality of life and 4 hypothetical health states. RESULTS. Extremely low birth weight young adults reported more functional limitations in cognition, sensation, mobility, and self-care, compared with control subjects. There were no differences between groups in the mean self-reported, health-related, quality of life or between impaired (n = 38) and nonimpaired (n = 105) extremely low birth weight subjects. However, with a conservative approach of assigning a score of 0 for 10 severely disabled, extremely low birth weight subjects, the mean health-related quality of life was significantly lower than control values. Repeated-measures analysis of variance to compare health-related quality-of-life measurements obtained for young adults and teens showed the same decline in scores over time for both groups. There were no differences between groups in the ratings provided for the hypothetical health states. CONCLUSIONS. At young adulthood, health-related quality of life was not related to size at birth or to the presence of disability. There was a small decrease in health-related quality-of-life scores over time for both groups.

Comparison of current health, functional limitations, and health care use of young adults who were born with extremely low birth weight and normal birth weight.

OBJECTIVE. The objective of this study was to compare the current health status, physical ability, functional limitations, and health care use of extremely low birth weight and normal birth weight young adults. METHODS. A longitudinal study was conducted of a population-based cohort of 166 extremely low birth weight survivors (501–1000 g birth weight; 1977–1982 births) and a group of 145 sociodemographically comparable normal birth weight individuals. Current health status, history of illnesses, hospitalizations, use of health resources, and physical self-efficacy were assessed through questionnaires that were administered to the young adults by masked interviewers. RESULTS. Individuals completed the assessments at a mean age of 23 years. Neurosensory impairments were identified in 27% of extremely low birth weight and 2% of normal birth weight individuals. No differences were reported in the current health status for physical or mental summary scores. Extremely low birth weight young adults reported a higher prevalence of chronic health conditions in the past 6 months. A significantly higher proportion of extremely low birth weight individuals had functional limitations in seeing, hearing, and dexterity and experienced clumsiness and learning difficulties. Except for prescription glasses, medications for depression, and home-care services for extremely low birth weight individuals, there were no significant differences between groups in use of health care resources. Extremely low birth weight individuals had significantly weaker hand grip strength and lower scores for physical self-efficacy, perceived physical ability, and physical self-confidence. CONCLUSIONS. Extremely low birth weight young adults seem to enjoy similar current health status to their normal birth weight peers. However, they continue to have significantly poorer physical abilities and a higher prevalence of chronic health conditions and functional limitations. Contrary to expectations, they do not pose a significant burden to the health care system at young adulthood.

Parental Perspectives of the Health Status and Health-Related Quality of Life of Teen-Aged Children Who Were Extremely Low Birth Weight and Term Controls

Objectives. To compare the health status and health-related quality of life of teen-aged children who were extremely low birth weight (ELBW) with matched controls from the perspective of their parents. Study Design. Geographically defined cohort; longitudinal follow-up; cross-sectional interviews. Participants: parents of 149/169 (88%) ELBW children between 12 and 16 years of age (including 41 children with neurosensory impairments) and 126/145 (87%) parents of term controls. Health status of the teenagers was classified according to the 6 attributes of the Health Utilities Index Mark 2, based on information obtained during parent interviews. Parents were asked to imagine themselves living in their own childs health state and 4 preselected hypothetical health states when providing directly measured standard gamble utility scores. Results. Parents of ELBW children reported a higher frequency and more complex functional limitations than parents of controls for their own childrens health status. Also, the mean utilities were lower (ELBW = .91 vs controls = .97) and the variability in their scores was greater. There were no differences in the valuation of the hypothetical health states provided by parents of ELBW and control children. Conclusions. ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions. Nonetheless, parents of ELBW children, on average, rated the health-related quality of life of their children fairly high. Thus, differences in reported functional status are not necessarily associated with lower utility scores.

Growth Trajectories of Extremely Low Birth Weight Infants From Birth to Young Adulthood: A Longitudinal, Population-Based Study

We compared sex-specific growth attainment of a population-based cohort of 147/166 (89%) extremely low birthweight (ELBW < 1000 g) and 131/145 (90%) sociodemographically comparable normal birthweight (NBW) cohort at young adulthood, and examined the pattern of growth trajectories and correlates of growth at ages 1, 2, 3, and 8 y, and teen and young adulthood (mean age, 23.3 versus 23.6 y). The proportion considered small for gestational age was ELBW 25% versus NBW 3%; and 26% versus 2% had neurosensory impairments. Weight for age z-scores for ELBW showed substantial decline to age 3 y, with subsequent significant catch-up to adolescence and smaller gains to adulthood. Height for age z-scores showed both sexes of ELBW were disadvantaged at every age compared with NBW and their expected mid-parental height. The BMI z-scores for ELBW showed a sustained incline from age 3 to adulthood, where both sexes normalized to above zero, and were comparable to their peers. ELBW children showed growth failure during infancy, followed by accelerated weight gain and crossing of BMI percentiles at adolescence, a pattern that may increase the risk of insulin resistance and coronary heart disease. However, normalization of BMI for both sexes at adulthood suggests that final growth was proportionate.

Follow-up of infants 501 to 1,500 gm birth weight delivered to residents of a geographically defined region with perinatal intensive care facilities

In an attempt to minimize the selection bias inherent in reporting the outcome of premature infants from a particular neonatal intensive care unit, this study presents data on all 294 live births 501 to 1,500 gm birth weight born to residents in the Hamilton-Wentworth region during 1973-78. The survival rate was 31.9% in infants less than or equal to 1,000 gm and 82.6% in infants between 1,001 to 1,500 gm. In all, 184 infants (62.6%) were discharged alive and 37 of these had weight less than or equal to 1,000 gm. The mean BW of the survivors was 1,216 +/- 214 gm and the mean gestation was 30.0 +/- 2.9 weeks, with 18.0% being small-for-gestational age. Neurologic handicaps including cerebral palsy, hydrocephalus, microcephaly, blindness, deafness, and mental retardation occurred in 30/179 (16.8%) survivors. The incidence of neurologic handicaps was 30% among babies who received IPPV versus 10% in those who did not. Within the IPPV and non-IPPV groups, there were no significant differences in handicap rates by 500 gm BW class.

Outcome in infants 501 to 1000 gm birth weight delivered to residents of the McMaster Health Region.

The mortality and morbidity for all 255 live births of infants with birth weight 501 to 1000 gm and delivered to residents of a geographically defined region between 1977 and 1980 are reported. In all, 117 (46%) infants were discharged alive; there were four postdischarge deaths, and three infants were lost to follow-up. The mean birth weight and gestational age of the survivors was 850 +/- 118 gm and 27.1 +/- 2 weeks, respectively. Neurosensory handicaps were detected in 26 (24%) of 110 survivors followed for a minimum of 2 years corrected age. In addition, 29 (26%) infants had nonneurologic problems and 55 (50%) were considered apparently normal. Within 100 gm birth weight groups, survival improved significantly with increasing birth weight, but the handicap rate among survivors remained relatively constant. These figures are proposed for use in describing the current prognosis at birth for liveborn tiny infants from comparable unselected populations.

Development, reliability and validity of a new measure of overall health for pre-school children

Background: Few comprehensive systems are available for assessing and reporting the overall health of pre-school children.Objectives: (i) To develop a multi-dimension health status classification system (HSCS) to describe pre-school (PS) children 2.5–5 years of age; (ii) to report reliability and validity of the newly developed measure. Design: Existing systems (Health Utilities Index, Mark 2 and 3) were adapted for application to a pre-school population. The new system was tested for acceptability, validity and reliability. Participants: Three cohorts of children and their parents from Canada and Australia were utilized: Cohort 1 (MAC)-101 3-years old very low birthweight (VLBW, < 1500 g) and 50 same age term children from Canada; Cohort 2 (AUS)-150 VLBW 3-years old from Australia; Cohort 3 (OMG)-222 3-years old with cerebral palsy (CP) from Ontario. Methods: Parental intra-rater reliability was evaluated by completion of the HSCS-PS Parent questionnaire (MAC) at the clinic visit and again 14 days later. Health professionals (MAC) completed the HSCS-PS Clinician questionnaire. Percent agreement and Kappa values were used to assess parent-clinician agreement. Concurrent validity was tested in two populations of VLBW children (MAC and AUS) and a reference group of term children (MAC) by exploring the relationships between dimensions of the HSCS-PS and well-recognized norm-referenced measures: the Bayley Scales of Infant Development (BSID-II), the Vineland Adaptive Behavior Scales (VABS) and the Stanford-Binet (SB). Construct validity was tested by comparing ratings on both the HSCS-PS and the Gross Motor Function classification system (GMFCS) using a population of pre-school children with CP. Analyses were done using χ2, ANOVA and correlations with tau-b statistic. Results: The HSCS-PS has 12 dimensions and 3–5 levels per dimension. Response rate for parental intra-rater reliabilitywas 95%, with percent agreement ranging between 86 and 100%. Kappa values for various dimensions ranged from 0.38 to 1.00. Inter-rater reliability between parents and clinicians showed agreement ranging from 72 to 100%. Kappa values ranged from 0.30 to 1.00. Concurrent Validity: There was a statistically significant gradient between HSCS-PS Mobility levels and motor scale scores of the BSID-II and VABS. A significant gradient also occurred when comparing HSCS-PS cognition levels to psychometric scores on the BSID-II and SB, as well as HSCS-PS self-care levels compared to VABS Daily Living scores. Discriminative and Construct validity: Birthweight category was shown to be a significant determinant of proportion of children with multiple HSCS-PS dimensions affected. In addition, HSCS-PS dimension levels were congruent with GMFCS levels where expected: mobility had excellent correlation; self-care, dexterity, speech and cognitive dimensions had moderate correlations. Conclusions: The HSCS-PS is readily accepted, quick to complete, widely applicable and provides a multi-dimensional description of health status. Preliminary assessments of reliability and validity are promising. The HSCS-PS can discriminate across populations by birthweight and shows strong relationships with standardized psychometric measures in comparable domains. It can provide a summary profile of functional limitations in various populations of pre-school children in a consistent manner across programs and in different settings.

The Move & PLAY Study: An Example of Comprehensive Rehabilitation Outcomes Research

This perspective article provides an example of a study planned using guidelines for comprehensive rehabilitation outcomes research, an approach that is believed to give service providers meaningful evidence to support practice. This line of investigation has been guided by the World Health Organizations International Classification of Functioning, Disability and Health. The short title of a study under way is Move & PLAY (Movement and Participation in Life Activities of Young Children). The article briefly describes the conceptual model, provides guidelines on how indicators and measures are selected, alludes to the details of selected measures, and describes processes of preparing for data collection, including obtaining ethics approval, preparing data collection booklets, training assessors and interviewers, and sampling. The aim of this investigation is to gain a better understanding of the multiple child, family, and service factors associated with changes in mobility, self-care, and play of preschool children with cerebral palsy as a result of using this research method. Comprehensive rehabilitation outcomes research holds promise in providing evidence that supports the complexities of planning rehabilitation services with clients with chronic conditions, such as children with cerebral palsy.

Impact of Extreme Prematurity on Family Functioning and Maternal Health 20 Years Later

OBJECTIVE: The goal was to examine the impact of illness on families and the long-term effects on the health of parents of young adults (YAs) who were born with extremely low birth weight (ELBW), compared with normal birth weight (NBW) control subjects. METHODS: A longitudinal cohort study was performed. Participants were mothers of eligible ELBW and NBW YAs. Information was obtained with well-validated questionnaires. RESULTS: At young adulthood, 130 (81%) of 161 ELBW group and 126 (89%) of 141 NBW group mothers participated. There were no significant differences in scores between groups with respect to marital disharmony, family dysfunction, maternal mood, state anxiety, social support, depression, and maternal physical and mental health. The finding of no differences was unchanged when 27 YAs with neurosensory impairment (NSI) were excluded, except for family dysfunction scores, which were paradoxically lower for families with YAs with NSI. Although the impact scores revealed that significantly more parents of ELBW YAs were negatively affected with respect to their jobs and educational or training opportunities, mothers of ELBW YAs reported that the experience of caring for their child brought their family closer together and that relatives and friends were more helpful and understanding, compared with mothers of NBW YAs. Significantly more mothers of ELBW YAs with NSI, compared with those without NSI, felt better about themselves for having managed their childs health. CONCLUSION: It seems that, by young adulthood, there is a minimally negative long-term impact of having an ELBW child in the family, regardless of the presence of NSI.

Comparison of the prevalence and impact of health problems of pre-school children with and without cerebral palsy

BACKGROUND The range of health problems associated with children with cerebral palsy (CP) is well documented in the literature; however, the existing data are often either reported for samples of children with all types of CP, or stratified by typology of motor disorder, rather than using the Gross Motor Function Classification System (GMFCS), which has been shown to be the most reliable way of classifying children with CP. Furthermore, availability of research on pre-school-aged children (under 5 years) is sparse. The aim of this study is to compare the prevalence and impact of health problems in pre-school children with and without CP, stratified by the GMFCS. METHODS Parents of 430 pre-school-aged children with CP (243 boys, 187 girls; mean age = 3 years 2 months, SD = 11 months) and 107 typically developing (TD) children (56 boys, 51 girls; mean age = 3 years 4 months, SD = 11 months) participated. Using the consensus definition of CP and the World Health Organizations International Classification of Functioning, Disability and Health, a parent survey was developed to assess the prevalence and impact of 16 health problems. The measure demonstrates good test-retest reliability (ICC > 0.80) and discriminant validity across GMFCS levels (P < 0.001). RESULTS Both the prevalence and impact of health problems is greater in children with CP compared with TD children (P < 0.001). The number and impact of health problems increase with ascending GMFCS level (P ≤ 0.01), except for the impact of health problems between groups GMFCS I and GMFCS II/III (P= 0.19). Children with CP have an average of between 3.4 and 6.7 health problems, compared with fewer than one in TD children. CONCLUSIONS Service providers working with pre-school-aged children with CP need to consider health problems and their impact when planning care.