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Schmidt B, Anderson PJ, Asztalos EV, et al. Self-reported Quality of Life at Middle School Age in Survivors of Very Preterm Birth: Results From the Caffeine for Apnea of Prematurity Trial. JAMA Pediatr. 2019;173(5):487–489. doi:10.1001/jamapediatrics.2018.4853
Data on health-related quality of life are sparse for children who were born very preterm during the past 2 decades and limited to single countries.1,2 We studied the self-reported quality of life in an international cohort of 11-year-old children with birth weights of 500 to 1250 g.
From May 7, 2011, to May 27, 2016, we performed an 11-year follow-up of Canadian, Australian, British, and Swedish participants in the Caffeine for Apnea of Prematurity trial.3 As reported previously,3 neonatal caffeine therapy was associated with a reduced risk of motor impairment at middle school age. During this 11-year follow-up, the children were invited to complete Kidscreen-52, a generic, health-related quality-of-life questionnaire for children and adolescents.4,5 The research ethics boards of all 13 centers where this instrument was administered (McMaster University Medical Center, Hamilton, Ontario, Canada; Royal Women’s Hospital, Melbourne, Victoria, Australia; Sunnybrook Health Sciences Center, Toronto, Ontario, Canada; Women’s and Children’s Hospital, Adelaide, South Australia, Australia; Mercy Hospital for Women, Melbourne, Victoria, Australia; Children’s and Women’s Health Centre of British Columbia, Vancouver, British Columbia, Canada; Foothills Hospital and Alberta Children’s Hospital, Calgary, Alberta, Canada; St. Boniface Hospital, Winnipeg, Manitoba, Canada; Astrid Lindgren Children’s Hospital, Stockholm, Sweden; The James Cook University Hospital; Middlesborough, UK; Royal Maternity Hospital, Belfast, UK; Royal Victoria Infirmary, Newcastle, UK; and Northern Neonatal Initiatives, UK) approved the present study. Written informed consent was obtained from a parent or guardian of each child, and assent was obtained from the child when appropriate.
Kidscreen-52 T scores were computed for each of the 10 dimensions of health-related quality of life (physical and psychological well-being, moods and emotions, self-perception, autonomy, parent relations and home life, financial resources, social support and peers, school environment, and bullying). The mean (SD) dimension T score is 50 (10) in the European reference populations. Higher T scores indicate better quality of life.4,5 Mean differences between the T scores of the caffeine and placebo groups were adjusted for center with multiple linear regression. In post hoc analyses, we examined regional differences and the associations between motor impairment and Kidscreen-52 T scores.
Kidscreen-52 questionnaires were completed by 821 of the 944 (87.0%) children (median [IQR] age, 11.4 [11.1 to 11.9] years); 420 male (51.2%) and 401 (48.8%) female, who had contributed data for the main functional outcomes at middle school age. 3 The demographics of these children were similar to those of the main 11-year follow-up cohort.3 Although fewer children had a motor impairment after caffeine exposure than after placebo therapy, the mean Kidscreen-52 T scores did not differ significantly between the 2 groups for 9 of the 10 dimensions and favored the placebo group for 1 dimension (Table 1). In post hoc analyses, children with motor impairment had significantly worse mean T scores than those without impairment for the following 5 dimensions: physical well-being (mean difference, −2.3; 95% CI, −3.7 to −0.8; P = .002), moods and emotions (mean difference, −1.8; 95% CI, −3.4 to −0.2; P = .03), autonomy (mean difference, −2.2; 95% CI, −3.8 to −0.7; P = .006), financial resources (mean difference, −2.7; 95% CI, −4.4 to −1.1; P = .001), and school environment (mean difference, −2.1; 95% CI, −3.9 to −0.3; P = .02).
When compared with the Kidscreen-52 reference population, the mean dimension T scores of the entire study cohort were significantly decreased only for financial resources (mean difference, −3.2; 95% CI, −3.9 to −2.5; P < .001) and social acceptance (bullying) (mean difference, −2.7; 95% CI, −3.5 to −1.9; P < .001).
A total of 755 participants were residents of Canada or Australia. Demographic differences between the participants in Australia and Canada included less formal caregiver education, less favorable family arrangements, and greater reliance on government financial support in Australia. However, even after covariate adjustment, the mean Kidscreen-52 T scores remained significantly lower for Australian than Canadian children for 5 of the 10 dimensions (Table 2).
The 11-year follow-up of participants in the Caffeine for Apnea of Prematurity trial provided the opportunity to measure the self-reported quality of life in a large and recent international cohort of children who were born very preterm. Caffeine therapy had no significant effects on most aspects of health-related quality of life. The single adverse caffeine effect on perceptions about peer support was small and may have arisen by chance.
In post hoc analyses, motor impairment was associated with reduced quality-of-life scores in multiple dimensions. The effect sizes were comparable to those reported for children with special health care needs.4 In addition, we observed consistent but unexplained small differences between the Canadian and Australian children that require future investigation in cross-cultural quality-of-life studies after very preterm birth.6
Accepted for Publication: October 17, 2018.
Corresponding Author: Barbara Schmidt, MD, MSc, Department of Clinical Epidemiology and Biostatistics, McMaster University, 6103 Cedar Grove, Burlington, ON L7P0N1 Canada (email@example.com).
Published Online: March 4, 2019. doi:10.1001/jamapediatrics.2018.4853
Author Contributions: Mr Roberts had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Schmidt, Doyle, Grunau, Roberts.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Schmidt.
Critical revision of the manuscript for important intellectual content: Anderson, Asztalos, Doyle, Grunau, Moddemann, Roberts.
Statistical analysis: Roberts.
Obtained funding: Schmidt, Asztalos, Grunau, Roberts.
Administrative, technical, or material support: Anderson, Grunau, Moddemann, Roberts.
Conflict of Interest Disclosures: Mr Roberts reported receiving grants from the Canadian Institutes of Health Research during the conduct of the study. No other disclosures were reported.
Funding/Support: This study was supported by grant MOP 102601 from the Canadian Institutes of Health Research.
Role of the Funder/Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: The following investigators participated in the data collection for this study and the analysis and interpretation of the results: Lorrie Costantini, BA, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; Peter G. Davis, MD, Royal Women’s Hospital, Melbourne, Australia; Deborah Dewey, PhD, Alberta Children’s Hospital Research Institute for Child and Maternal Health, University of Calgary, Calgary, Alberta, Canada; Judy D’Ilario, RN, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada; Harvey Nelson, MSc, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada; Arne Ohlsson, MD, MSc, Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada; Alfonso Solimano, MD, University of British Columbia, Vancouver, British Columbia, Canada; and Win Tin, MD, Department of Pediatrics, James Cook University Hospital, Middlesbrough, United Kingdom. Mss Costantini and D’Ilario received salaries as research staff members, and Mr Nelson received a consultant fee. None of the other collaborators received any compensation for their role.