Measuring economic consequences of preterm birth - Methodological recommendations
      for the evaluation of personal burden on children and their caregivers

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Abstract

This study aims to identify the impact of a preterm birth on financial and emotional burden from the families' perspective. Additionally, a comprehensive schedule of recommendations for a sufficient evaluation of all aspects of burden is developed. Based on the results of a literature search relevant categories and sub-domains for a questionnaire covering multiple aspects of associated financial and emotional burden are identified and converted into a recommendation scheme. Results of the literature search illustrate the large extend of burden of prematurity on parents. This results in substantial out-of-pocket expenditures (OOPE) and emotional distress to the parents besides the medical problems and further financial costs to the health insurance system. According to the results on infants' state of health, OOPE and emotional distress are significantly increased with decreasing gestational age. OOPE for transportation often amounts to the main parental cost dimension. Moreover there is some evidence for a high magnitude of reduced income and missed work days. The family perspective has to be taken into account when calculating the overall costs of preterm births from a societal point of view. However, in recent years economic evaluations were performed rather inhomogeneously in this field. For future studies a) direct medical costs, b) direct non-medical costs, c) indirect costs as well as d) intangible costs (in terms of emotional distress and reduced quality of life for caregivers and children) are the main categories that should be evaluated measuring personal burden of preterm birth on families adequately. A detailed list of specific sub-domains is given. Additionally, the recommendations are not restricted to application in infants born preterm and/or at low birth weight.

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Most cited references 42

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Neurologic and developmental disability after extremely preterm birth. EPICure Study Group.

Nicholas Wood, Neil Marlow, Kate Costeloe … (2000)

Small studies show that many children born as extremely preterm infants have neurologic and developmental disabilities. We evaluated all children who were born at 25 or fewer completed weeks of gestation in the United Kingdom and Ireland from March through December 1995 at the time when they reached a median age of 30 months. Each child underwent a formal assessment by an independent examiner. Development was evaluated with use of the Bayley Scales of Infant Development, and neurologic function was assessed by a standardized examination. Disability and severe disability were defined by predetermined criteria. At a median age of 30 months, corrected for gestational age, 283 (92 percent) of the 308 surviving children were formally assessed. The mean (+/-SD) scores on the Bayley Mental and Psychomotor Developmental Indexes, referenced to a population mean of 100, were 84+/-12 and 87+/-13, respectively. Fifty-three children (19 percent) had severely delayed development (with scores more than 3 SD below the mean), and a further 32 children (11 percent) had scores from 2 SD to 3 SD below the mean. Twenty-eight children (10 percent) had severe neuromotor disability, 7 (2 percent) were blind or perceived light only, and 8 (3 percent) had hearing loss that was uncorrectable or required aids. Overall, 138 children had disability (49 percent; 95 percent confidence interval, 43 to 55 percent), including 64 who met the criteria for severe disability (23 percent; 95 percent confidence interval, 18 to 28 percent). When data from 17 assessments by local pediatricians were included, 155 of the 314 infants discharged (49 percent) had no disability. Severe disability is common among children born as extremely preterm infants.

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A single European currency for EQ-5D health states. Results from a six-country study.

David Parkin, Paul Kind, Siem Oppe … (2003)

The EQ-5D questionnaire is a widely used generic instrument for describing and valuing health that was developed by the EuroQol Group. A primary objective of the EuroQol Group is the investigation of values for health states in the general population in different countries. As part of the EuroQol enterprise 11 population surveys were carried out in six Western European countries (Finland, Germany, The Netherlands, Spain, Sweden and the UK) to value health states as defined by the EQ-5D using a standardised visual analogue scale (EQ-5D VAS). This contribution reports how a European set of general population preference weights was derived from the data collected in the 11 valuation studies. The scores from this set of preference weights can be applied to generate a VAS-based weighted health status index for all the potential 243 EQ-5D health states for use in multi-national studies. To estimate the preference weights a multi-level regression analysis was performed on 82,910 valuations of 44 EQ-5D health states elicited from 6,870 respondents. Stable and plausible solutions were found for the model parameters. The R(2) value was 75%. The analysis showed that the major source of variance, apart from 'random error', was variance between individuals (28.3% of the total residual variance). These results suggest that VAS values for EQ-5D health states in six Western European countries can be described by a common model.

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Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant.

Lynn Singer (1999)

Few studies document how parents adapt to the experience of a very low-birth-weight (VLBW; 36 weeks, >2500 g). Standardized, normative self-report measures of maternal psychological distress, parenting stress, family impact, and life stressors. Mothers of VLBW infants (high risk, n = 122; low risk, n = 84) had more psychological distress than mothers of term infants (n=123) at 1 month (13% vs 1%; P = .003). At 2 years, mothers of low-risk VLBW infants did not differ from term mothers, while mothers of high-risk infants continued to report psychological distress. By 3 years, mothers of high-risk VLBW children did not differ from mothers of term children in distress symptoms, while parenting stress remained greater. Severity of maternal depression was related to lower child developmental outcomes in both VLBW groups. The impact of VLBW birth varies with child medical risk status, age, and developmental outcome. Follow-up programs should incorporate psychological screening and support services for mothers of VLBW infants in the immediate postnatal period, with monitoring of mothers of high-risk VLBW infants.