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Quality of Life of Formerly Preterm and Very Low Birth Weight Infants From Preschool Age to Adulthood: A Systematic Review

^a Rehabilitation Sciences
^b Department of Physical Therapy, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada

	ABSTRACT

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
OBJECTIVE. The goal of this systematic review was to synthesize studies that examined the health-related quality of life of preschool- and school-aged children, adolescents, and young adults who were born preterm and/or at very low birth weight.

METHODS. We searched 7 databases up to September 2006 (Medline, PubMed, Embase, EBM Reviews, Cumulative Index of Nursing and Allied Health Literature, PsycINFO, and the Educational Resource Information Center) as well as gray literature sources. We independently screened studies and included them only if a quality-of-life outcome measure was used and findings compared preterm, very low birth weight, or extremely low birth weight infants with term or normal birth weight peers. We independently assessed the methodologic quality of each study by using criteria adapted from the Centre for Reviews and Dissemination.

RESULTS. Fifteen cohort or cross-sectional studies met the review criteria. In 6 studies of preschool-aged children, differences were found between study and control groups, suggesting that many preschool children born preterm or at very low birth weight perform more poorly than their peers in physical, emotional, and/or social functioning. Extremely low birth weight school-aged children had lower health utility scores compared with their peers, and similar results were found for adolescents. Parents of preterm and very low birth weight teens noted significantly poorer performance in their child's global health, behavior, and physical functioning, whereas the teenagers themselves did not. In young adulthood, differences in physical functioning remained, but subjective quality of life was similar to normal birth weight peers.

CONCLUSIONS. The effects of preterm birth/very low birth weight on health-related quality of life seem to diminish over time, which possibly reflects issues related to a child's report versus a parent-proxy report, differing definitions of health-related quality of life, and adaptation of individuals over time, versus true change in health-related quality of life.

Key Words: extremely low birth weight • very low birth weight • health-related quality of life • quality of life • systematic review

Abbreviations: VLBW—very low birth weight • ELBW—extremely low birth weight • QoL—quality of life • HRQoL—health-related quality of life • NBW—normal birth weight • ELGA—extremely low gestational age

In recent decades, advances in neonatal care and medical technology have resulted in the increased survival of very low birth weight (VLBW; <1500 g) and extremely low birth weight (ELBW; <1000 g) infants. Although mortality has decreased, high morbidity continues in this population.¹ Long-term studies have indicated that these vulnerable infants have issues with growth, health, learning, and behavior during childhood,^2–5 with some difficulties persisting into adulthood.^6–8

Of recent interest in medical practice and research is the measurement of health-related quality of life (HRQoL) to examine the burden of morbidity, evaluate outcomes, and determine cost-effectiveness of interventions.⁹ Although no consensus exists on the definition of HRQoL, many researchers have embraced the World Health Organization's definition of health: "a state of complete physical, mental, and social well-being and not merely the absence of disease."¹⁰ Researchers who use this concept of HRQoL typically employ generic health measures, which reflect physical, emotional, and social functioning.

Other health researchers have used health utility measures, which evaluate preferences for health states under conditions of uncertainty.¹¹ In this case, HRQoL is defined as the value individuals or their proxies assign to a particular health state. Theunissen et al¹² extended this definition of HRQoL by combining health status with the degree to which a person experiences negative emotions with their health.

Other authors have used the definition by Aggernaes¹³, who proposed that quality of life (QoL) is the fulfillment of 4 fundamental human needs: (1) elementary biological need; (2) need for warm human relations; (3) need for meaningful occupations; and (4) need for diverse and exciting experiences.^14,15 Despite these differing definitions of QoL, Eiser and Morse¹⁶ have identified 3 key elements: (1) QoL is subjective and based on the perception of the individual; (2) QoL is a multidimensional construct; and (3) QoL can include objective information (ie, what an individual can do) and the individual's subjective appraisal of their QoL.

Several authors have examined the QoL of preterm (<37 weeks' gestation), VLBW, and ELBW infants at older ages. Given that birth weight is a prognostic indicator of long-term outcome,¹⁷ it is conceivable that preterm and VLBW infants may experience lower QoL than their peers over their life span. The purpose of this systematic review was to answer the question: In preschool-aged children, school-aged children, adolescents, and young adults, do preterm birth and/or VLBW have an effect on HRQoL?

	METHODS

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
Search Strategy
We searched the databases Medline and PubMed (from 1966 to September 2006), Embase (from 1980 to September 2006), EBM Reviews (to September 2006), Cumulative Index of Nursing and Allied Health Literature (CINAHL) (from 1982 to September 2006), PsycINFO (from 1975 to September 2006), and Educational Resource Information Center (ERIC) (from 1969 to September 2006) by using the search terms outlined in the Appendix. We also attempted to locate additional, unpublished, and gray literature by searching the System for Information on Gray Literature (SIGLE), ProQuest, PapersFirst, ProceedingsFirst, National Library of Canada, Google Scholar, Web of Science, Health Canada, and the Canadian Institute for Health Information databases. Duplicate articles were excluded from subsequent searches.

A liberal search strategy was used initially to include terms related to QoL such as health status, well-being, activity and/or participation limitation, functional status, or motor skill impairment. This strategy resulted in our finding a large number of irrelevant articles, but it enabled us to find some additional articles that were pertinent to the question under study. Study populations that included preterm, VLBW, or ELBW cohorts were considered for review. We were particularly interested in children who did not experience major neurologic disability as a result of their birth. Studies that focused primarily on low birth weight infants or those who were small for gestational age were excluded.

Study Selection
See Fig 1 for the process of study selection. A comprehensive search of the literature produced a total of 1845 article titles, which we independently reviewed. Titles were included if either reviewer selected them, resulting in 206 abstracts for additional review. Each of us independently screened the abstracts by using a checklist of selection and exclusion criteria. We initially achieved 84.5% agreement on which abstracts to include, followed by consensus after discussion of the remaining abstracts. A total of 49 full-text articles were obtained and independently reviewed. Our initial interrater reliability of which articles would proceed to quality assessment was 67.3%, and we reached a consensus after discussion.

View larger version (18K): [in this window] [in a new window]   FIGURE 1 Flowchart of selection of eligible studies. a The actual number of studies was 21, but 2 were combined in the analysis because of duplicated sample or data in publications.

Quality Assessment
We assessed the methodologic quality of each study by using a 9-item quality assessment scale designed for cohort studies that was modified from the Centre of Reviews and Dissemination.¹⁸ Eight of the items (eg, sufficient description of groups, comparability of groups, blinded outcome assessment) require a yes/no response (yes = 1; no = 0). The other item relates to the proportion of the cohort that was followed up (<50% = 0; 50%–75% = 1; >75% = 2). The maximum possible score is 10. Scores of 7 were considered to indicate strong studies, 4 to 6 moderate, and <4 weak. We reviewed study quality independently and resolved any differences by reaching a consensus agreement. A description of the studies that met our inclusion criteria and our consensus quality rating are outlined in Table 1.

	RESULTS

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
A total of 6 studies examined QoL in preschool-aged children who were born at VLBW and/or preterm. Significant differences in physical functioning between study groups and controls were found in 4 studies (5 publications), most notably in motor functioning,^{12,20,21,22,24,25} with poorer performance by the preterm and/or VLBW children. Although not statistically significant, Stjernqvist and Svenningsen²⁶ reported that 3 of 20 ELBW children in their sample were not able to walk, and another 5 had some abnormality on neuropediatric examination. Social functioning was also significantly lower for preterm and VLBW preschool-aged children compared with those in the control groups.^20,22–25 In some studies, there was no significant difference between the 2 groups in emotional functioning,^23–25 whereas in others, preterm children were significantly more anxious than those in the control groups.^12,20,22

Only 1 study (which involved 2 separate publications) examined QoL in preterm, school-aged children compared with those in the control groups.^11,28 Saigal et al²⁸ compared mean utility scores of ELBW children with children born at term and found that HRQoL was significantly lower for the ELBW children compared with the general population.

Four studies explored QoL of preterm adolescents and term peers: 2 used the Health Utilities Index, and 2 used the Child Health Questionnaire. ELBW teenagers reported significantly lower utility scores than their peers, but not necessarily a lower HRQoL.^29–31 Similarly, VLBW teenagers did not rate themselves as significantly different from their peers on a generic health measure.²⁹ In contrast, parents of these teenagers reported significantly lower scores in their child's behavior compared with parents of children in the control groups. Parents of VLBW teenagers with low IQ indicated that their children performed significantly lower in terms of global health and behavior, general health perception, self-esteem, and family activities. Parents reported a significant impact on their own psychosocial health, mostly notably in emotional impact and time, regardless of their child's IQ.²⁹

Parents of ELBW and extremely low gestational age (ELGA) teens reported that their children's QoL was significantly different from their peers both on utility measures³² and generic health measures.³⁰ Adolescents of ELGA were significantly more limited because of physical health issues and in the amount and types of school work and activities with friends. Parents of these teenagers also perceived their children to have significantly lower global health and physical functioning compared with parents of term teenagers.³⁰

Compared with their NBW peers, there were no differences in QoL¹⁴ or subjective QoL¹⁵ as reported by young adults who had been born at VLBW. However, the latter study showed significantly lower scores for the former VLBW infants in objective QoL, which is based on societal standards as opposed to individuals' experiences and preferences.¹⁵ Cooke³³ reported significantly poorer performance in physical functioning of VLBW adults compared with NBW adults but found no other significant differences on the Medical Outcomes Study 36-item Short-Form Health Survey (SF-36) between the 2 groups.

Saigal et al³⁴ followed a cohort of ELBW and NBW infants to young adulthood. Although no significant difference in mean utility scores was found between the 2 groups, the scores from both cohorts decreased by a clinically significant amount from their ratings at adolescence. Because this apparent decrease in QoL was found in both the ELBW and NBW adults, birth weight does not account for this finding; it may reflect a difference in how individuals cognitively appraise their situation as they mature.

	DISCUSSION

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
We will restate and discuss the original research question by each of the specific age groupings that were included in the systematic review. First, in preschool-aged children, do preterm birth and/or VLBW have an effect on HRQoL? Six of the 15 studies explored HRQoL in the preschool age group. Differences between the study and control groups were reported in all 6 studies, suggesting that many preschool-aged children born preterm or at VLBW performed significantly more poorly than their peers in physical, emotional, and/or social functioning. Only 2 of the 6 studies were judged to be of high methodologic quality,^12,26 with the others judged to be of moderate quality.^20,22–25

Given the young age of the children, judgment about the child's QoL was determined primarily by their parents. Although parent-proxy reporting is necessary for young children, parental QoL ratings are influenced by parents' feelings toward and expectations for their children.^12,35 Parents' knowledge of child development, coupled with their cultural, social, and educational background, are also thought to influence parent-proxy reports of QoL.³⁵ Despite the limitations of parent-proxy reporting, accumulating evidence suggests that preterm and VLBW preschool-aged children have lower QoL than their term and NBW peers.

In school-aged children, do preterm birth and/or VLBW have an effect on HRQoL? Although only 1 study^11,28 examined HRQoL in 8-year-old ELBW and term children, it was a methodologically rigorous and well-designed retrospective cohort study with a quality rating of 10. Nonetheless, there is insufficient information in the literature to answer the question of the effect of preterm birth on QoL at school age; this is an understudied but necessary endeavor. A large body of literature indicates that children born preterm or at VLBW experience academic, motor, psychosocial, and behavioral difficulties at school age.^2,36–40 Preterm children are also 2.6 times more likely than their term peers to develop attention-deficit/hyperactivity disorder,² which has been shown to affect the QoL of children and youth.⁴¹

In adolescents, do preterm birth and/or VLBW have an effect on HRQoL? Evidence suggests that parents of VLBW, ELBW, or ELGA teenagers perceive that their children had lower HRQoL than term peers, but the teens themselves did not. These studies highlight the issue of self-reporting versus parent-proxy reporting. Although it may be preferred to have the child's viewpoint, parents may have a broader, and perhaps more realistic, perspective. These findings support Eiser and Morse's⁴² contention that information about HRQoL should be obtained from both parent and child. In the case of children and youth with severe impairments, parent-proxy reporting may be the only assessment option for HRQoL and is necessary to gather information from this population and to avoid selection bias from its exclusion. Evidence from the 4 studies of preterm adolescents,^29–32 all judged to be methodologically strong, suggests that HRQoL may be affected, depending on whose perspective is garnered to answer this question.

In young adults, do preterm birth and/or VLBW have an effect on HRQoL? Four studies explored this issue, 3 of which were methodologically rigorous^14,15,34, with the fourth being termed methodologically weak.³³ Overall, there was no significant difference between preterm and term young adults, although measures of objective QoL and physical functioning were significantly lower for the preterm groups.

Notwithstanding the limited information on school-aged children, it seems that the impact of preterm birth or VLBW on HRQoL diminishes over time. More significant differences existed between study and control groups at preschool age than at adolescence or young adulthood. What is not known is whether this is a true change in HRQoL over time or whether it is because of the issues of parent-versus-child reporting, the different definitions and measures of HRQoL, or the adaptation and changing expectations of individuals as they grow and develop.

	LIMITATIONS

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
This systematic review is limited by the heterogeneity of the populations included in the review. Preterm infants are often, but not necessarily, born at VLBW or ELBW. Every effort was made to include infants who were both preterm and VLBW/ELBW and to exclude VLBW infants who were term but small for gestational age; however, not all studies reported gestational age and birth weight information. Biases inherent in the original studies were subsequently carried forward to this systematic review. To partially compensate for these biases, quality assessments were independently conducted by us to provide an indication of the integrity of the studies included in the review. Comparing QoL across age groups is confounded by changes in neonatal interventions over time, which may influence outcomes in different cohorts. That being said, improvements in outcome may or may not reflect a higher QoL from the individual's perspective. Finally, by only including studies that used a QoL measure, we consequently excluded a large body of preterm literature that dealt with QoL-related concepts. Although these studies add to our understanding of the future implications of prematurity or VLBW, they were not designed to investigate QoL, per se. Including only studies with a QoL measure was done in an effort to gain homogeneity despite differing conceptions of QoL.

	CONCLUSIONS

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
Results of this systematic review indicate that preterm birth and/or VLBW does have an effect on HRQoL at various age groups. The impact of low birth weight and gestational age is greatest during the younger years, but the influence also extends into adolescence and adulthood. The HRQoL of VLBW school-aged children is largely unknown.

Future research would benefit from having a consistent definition of HRQoL, which could consolidate the findings of future follow-up studies of VLBW children, adolescents, and adults. To date, health utility measures, generic health measures, neuropediatric examinations, and nonstandardized questionnaires have been used to measure HRQoL in this population. A consistent approach to measurement would also be helpful in understanding HRQoL across the life span. Although no 1 measure will be suitable for all age groups, generic health measures may allow for comparison of developmentally appropriate physical, emotional, and social functioning of preterm infants over time. Finally, after extensive review of the literature, only 1 study (S. Saigal, MD, written personal communication; 2007) has examined QoL-related concepts in ELBW young adults by using qualitative methodology. No qualitative studies have been conducted with preterm and/or VLBW children that solicited their perspective on what they deem important to their QoL or how they perceive it. Phenomenology may facilitate a deeper understanding of the lived experience of former preterm and/or VLBW children and youth and guide potential avenues for intervention to improve the QoL in this population. Studies that use grounded theory methodology would also be beneficial in helping to gather information from parents and children about the child's HRQoL that current quantitative measures have been unable to capture. It may be that health utility or generic health measures do not address QoL issues that are important for families. In-depth information that uses the voices of children and parents may indicate that we are not measuring what we need to measure to gain a better understanding of the QoL of these formerly vulnerable infants.

From a practical perspective, we may be able to improve the QoL of preterm and/or VLBW preschool- and school-aged children by referring them to rehabilitation professionals. Physical therapists, occupational therapists, speech language pathologists, and psychologists may improve physical, social, and emotional functioning of these children and facilitate increased participation in chosen activities. Although the effect of preterm birth and/or VLBW on QoL seems to diminish over time, we can improve our efforts to enhance the QoL of these children in the growing years.

	APPENDIX

TOP ABSTRACT METHODS RESULTS DISCUSSION LIMITATIONS CONCLUSIONS APPENDIX REFERENCES

 
Headings and Key Words With PubMed, Cumulative Index of Nursing and Allied Health Literature, and PsycINFO Truncation
* finds terms that begin with root word; truncation for PubMed, CINAHL, and PsycINFO; $ finds terms that begin with root word; truncation for Embase and EBM Reviews

Premature Infant: infant*, premature or premature infant* or prematurity or neonate, premature or premature infant or premature child or premature neonate or premature newborn or premature syndrome or prematuritas or infant, preterm or preterm infant or infant premature or infant, preterm or preterm infant.

VLBW or ELBW: very-low-birth weight infant* or infant*, very-low-birth weight or very low birth weight infant* or very low birth weight or infant*, very low birth weight or extremely low birth weight infant* or infant*, extremely low birth weight or extremely low birth weight or birth weight, very low.

Quality of Life: Quality of life or life qualit* or health related quality of life or health-related quality of life or human occupation or hrql.

Health Status: Health status or status, health or level* of health or health level or health levels or health, child* or children health or health, adolescent or health in ado or clinical state or health state or Sickness Impact Profile or health or wellness.

Well Being: Well-being or well being or personal satisfaction or satisfaction, personal or satisfaction or wellness or life satisfaction or psychological well-being or psychological well being or well-being, psychological or well being, psychological or spiritual well-being or spiritual well being or sense of well-being or sense of well being or perception of well-being or perception of well being.

Activity Limitation: Activities of daily living or activit*, daily living or daily living activit* or living activit*, daily or ADL or limitation of activity, chronic or chronic limitation of activity or activit*, human or human activit* or basic activit* of daily living or instrumental activit* of daily living or activity of daily living or leisure activit* or activit*, leisure or activit*, physical or physical activit* or daily activit* or daily life activit* or human activit*.

Participation Limitation: Mobility limitation* or limitation, mobility or ambulat* difficulty or difficulty walking or difficulty ambulation or locomotion or motor activit* or physical mobility or participation or participation limitation.

Leisure Activity: Leisure activit* or activit*, leisure or leisure* or recreation or daily activit* or hobb* or leisure time or relaxation.

Motor Activity: Motor activit* or activit*, motor or physical activit* or activit*, physical or locomotor activit* or activit*, locomotor.

Functional Status: activities of daily living or ability level or functional status or status, functional or level of functioning or capacity, functional or ability to function or daily life activity.

Motor Skill Impairment: motor skills disorder* or developmental coordination disorder* or coordination disorder*, developmental or coordination disorder*, childhood or childhood coordination disorder* or motor skill impairment or motor performance or performance, motor or ability, motor or function, motor or motor ability or motor function or motor skill* or skill*, motor.

Headings and Key Words With Embase and EBM Reviews Truncation
Premature Infant: infant$, premature or premature infant$ or prematurity or neonate, premature or premature infant or premature child or premature neonate or premature newborn or premature syndrome or prematuritas or infant, preterm or preterm infant or infant premature or infant, preterm or preterm infant.

VLBW or ELBW: very-low-birth weight infant$ or infant$, very-low-birth weight or very low birth weight infant$ or very low birth weight or infant$, very low birth weight or extremely low birth weight infant$ or infant$, extremely low birth weight or extremely low birth weight or birth weight, very low.

Quality of Life: Quality of life or life qualit$ or health related quality of life or health-related quality of life or human occupation or hrql.

Health Status: Health status or status, health or level$ of health or health level or health levels or health, child$ or children health or health, adolescent or health in ado or clinical state or health state or Sickness Impact Profile or health or wellness.

Well Being: Well being or well being or personal satisfaction or satisfaction, personal or satisfaction or wellness or life satisfaction or psychological well-being or psychological well being or well-being, psychological or well being, psychological or spiritual well-being or spiritual well being or sense of well-being or sense of well being or perception of well-being or perception of well being.

Activity Limitation: Activities of daily living or activit$, daily living or daily living activit$ or living activit$, daily or ADL or limitation of activity, chronic or chronic limitation of activity or activit$, human or human activit$ or basic activit$ of daily living or instrumental activit$ of daily living or activity of daily living or leisure activit$ or activit$, leisure or activit$, physical or physical activit$ or daily activit$ or daily life activit$ or human activit$.

Participation Limitation: Mobility limitation$ or limitation, mobility or ambulat$ difficulty or difficulty walking or difficulty ambulation or locomotion or motor activit$ or physical mobility or participation or participation limitation.

Leisure Activity: Leisure activit$ or activit$, leisure or leisure$ or recreation or daily activit$ or hobb$ or leisure time or relaxation.

Motor Activity: Motor activit$ or activit$, motor or physical activit$ or activit$, physical or locomotor activit$ or activit$, locomotor.

Functional Status: activities of daily living or ability level or functional status or status, functional or level of functioning or capacity, functional or ability to function or daily life activity.

Motor Skill Impairment: motor skills disorder$ or developmental coordination disorder$ or coordination disorder$, developmental or coordination disorder$, childhood or childhood coordination disorder$ or motor skill impairment or motor performance or performance, motor or ability, motor or function, motor or motor ability or motor function or motor skill$ or skill$, motor.

	ACKNOWLEDGMENTS

 
This work was supported in part by a Quality of Life Strategic Training Fellowship in Rehabilitation Research (awarded to Ms Zwicker) from the Canadian Institutes of Health Research Musculoskeletal and Arthritis Institute.

We thank Charlotte Beck, Health Sciences Reference Librarian at the University of British Columbia, for her guidance in conducting the library searches.

	FOOTNOTES

 
Accepted Jun 19, 2007.

Address correspondence to Jill Glennis Zwicker, MA, BA, BSc(OT), OT(C), School of Rehabilitation Sciences, University of British Columbia, T325-2211, Wesbrook Mall, Vancouver, British Columbia, Canada V6T 2B5. E-mail: jzwicker{at}interchange.ubc.ca

The authors have indicated they have no financial relationships relevant to this article to disclose.

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