Sharing of lessons learned from multisite research.

PURPOSE: To highlight key considerations for planning and implementing multisite research based on experiences and reflections in conducting a large, international, multisite study. DESCRIPTION: Successes and challenges encountered throughout a multisite study process, and collective recommendations for future researchers are presented. Considerations addressed include creation of the research team and a "community of practice," study preparation and management time, approval by institutional review boards, training of future researchers, recruitment and retention of participants, and dissemination and translation of study materials to consumers. IMPORTANCE TO MEMBERS: Multisite research has the potential to create knowledge for pediatric physical therapy through collaboration among knowledgeable researchers and expert practitioners and by increasing the potential for generalization of findings. Effective planning, including anticipation of challenges, is critical to a successful study. Our collective experiences may assist practitioners and researchers in planning, implementing, and completing future multisite studies.

Economic outcomes in young adulthood for extremely low birth weight survivors.

OBJECTIVE: The goal was to compare educational attainment and labor market outcomes in young adulthood (21-26 years of age) for a Canadian, population-based cohort of 149 extremely low birth weight (ELBW) (<1000 g) survivors and a normal birth weight (NBW) cohort of 133 young adults from the same geographic area who were matched to the ELBW cohort in childhood. METHODS: We estimated the effects of ELBW status, according to gender, on continuous outcomes through least-squares regression and those on binary outcomes through logistic regression. We controlled for family background and considered neurosensory impairment and IQ as mediating variables. RESULTS: Controlling for family background, ELBW male subjects were less likely to complete high school or to attend a university than were their NBW counterparts, and their educational attainment was reduced by >1 year. Among subjects who were working, weekly earnings were ∼27% lower. ELBW female effects on education were not significant, but ELBW female subjects were less likely than NBW subjects to be employed or in school and they also seemed to experience lower earnings. CONCLUSION: Our findings suggested that ELBW survivors are somewhat less productive as adults, on average, than are subjects born NBW and that effects are not confined to subjects with severe neurosensory impairments. In accord with other studies, however, we found that productivity deficits for most ELBW subjects were not large.

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 Organization's 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 child's 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 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.

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.

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.

Transition of extremely low-birth-weight infants from adolescence to young adulthood: comparison with normal birth-weight controls.

CONTEXT: Traditionally, educational attainment, getting a job, living independently, getting married, and parenthood have been considered as markers of successful transition to adulthood. OBJECTIVE: To describe and compare the achievement and the age at attainment of the above markers between extremely low-birth-weight (ELBW) and normal birth-weight (NBW) young adults. DESIGN, SETTING, AND PARTICIPANTS: A prospective, longitudinal, population-based study in central-west Ontario, Canada, of 166 ELBW participants who weighed 501 to 1000 g at birth (1977-1982) and 145 sociodemographically comparable NBW participants assessed at young adulthood (22-25 years). Interviewers masked to participant status administered validated questionnaires via face-to-face interviews between January 1, 2002, and April 30, 2004. MAIN OUTCOME MEASURES: Markers of successful transition to adulthood, including educational attainment, student and/or worker role, independent living, getting married, and parenthood. RESULTS: At young adulthood, 149 (90%) of 166 ELBW participants and 133 (92%) of 145 NBW participants completed the assessments at mean (SD) age of 23.3 (1.2) years and 23.6 (1.1) years, respectively. We included participants with neurosensory impairments (ELBW vs NBW: 40 [27%] vs 3 [2%]) and 7 proxy respondents. The proportion who graduated from high school was similar (82% vs 87%, P = .21). Overall, no statistically significant differences were observed in the education achieved to date. A substantial proportion of both groups were still pursuing postsecondary education (47 [32%] vs 44 [33%]). No significant differences were observed in employment/school status; 71 (48%) ELBW vs 76 (57%) NBW young adults were permanently employed (P = .09). In a subanalysis, a higher proportion of ELBW young adults were neither employed nor in school (39 [26%] vs 20 [15%], P = .02 by Holm's correction); these differences did not persist when participants with disabilities were excluded. No significant differences were found in the proportion living independently (63 [42%] vs 70 [53%], P = .19), married/cohabitating (34 [23%] vs 33 [25%], P = .69), or who were parents (16 [11%] vs 19 [14%], P = .36). The age at attainment of the above markers was similar for both cohorts. CONCLUSION: Our study results indicate that a significant majority of former ELBW infants have overcome their earlier difficulties to become functional young adults.

Stability of maternal preferences for pediatric health states in the perinatal period and 1 year later.

BACKGROUND: We have previously shown that parents of premature children provided relatively high valuation of their children's health state in adolescence. However, stability of parental preferences for future pediatric health states is unknown during the antenatal and neonatal periods and infancy. OBJECTIVE: To determine whether preference-based, health-related quality-of-life scores obtained serially from 2 cohorts (women with high-risk pregnancies [antenatal cohort] and mothers of very low-birth-weight newborns [VLBW cohort]) are stable during the first year after birth. DESIGN AND METHODS: Longitudinal cohort study. Participants included 80 high-risk pregnant women recruited at 24 +/- 2 weeks of gestation, and 75 mothers of VLBW infants recruited within 1 week of delivery. We conducted 2 to 3 standardized interviews (antenatally, at 1 week after delivery, and at the 12-month corrected age visit) using the Standard Gamble technique to elicit preferences for 5 pediatric hypothetical health states with varying disabilities. RESULTS: Seventy-three mothers with high-risk pregnancies (91%) and 72 mothers of VLBW infants (96%) completed all scheduled interviews. As expected, preference scores were affected by the level of severity of the hypothetical health states (antenatal cohort, F(4,288) = 87.0 [P<.001]; VLBW cohort, F(4,284) = 64.2 [P<.001]). At each assessment, at least 38% of mothers rated 1 or more health states as worse than death. Repeated-measures analysis showed no change in preference scores over time (antenatal cohort, F(2,144) = 1.3 [P =.29]; VLBW cohort, F(1,71) = 0.7 [P =.42]). Maternal socioemotional factors, infant severity of illness at birth, and global health at 12 months did not affect preference scores. CONCLUSION: In our population, maternal preference scores for disabling health states appear to be stable during the first year of life and are unaffected by key maternal and infant variables.