Ensuring Accurate Knowledge of Prematurity Outcomes for PrenatalCounseling

Fermin Blanco, MD*; Gautham Suresh, MD‡; Diantha Howard, MS§; and Roger F. Soll, MD*

ABSTRACT. Objectives. To determine the accuracy ofknowledge of different health care providers regardingsurvival and long-term morbidity rates for very prema-ture infants and to examine whether a focused educa-tional intervention improves the accuracy of this knowl-edge and influences health care decisions.

Methods. Using hypothetical case scenarios with in-fants at <28 weeks of gestation, we surveyed a variety ofcaregivers involved in perinatal communication and de-cision-making processes at a tertiary center that providesintensive care for neonates. We asked physicians fromthe pediatrics and obstetrics services and nurses andnurse practitioners from the NICU and obstetrics wardfor their best estimates of survival and major long-termdisability rates and for their opinions regarding the ap-propriateness of resuscitation and life support at eachweek of gestation of <29 weeks. After the survey, weeducated all providers about current data on survival andlong-term disability rates for preterm infants and gavethem pocket-sized cards summarizing this informationfor reference during prenatal counseling. One monthafter the educational intervention and complete dissem-ination of the cards, a questionnaire with questions iden-tical to those in the first survey was mailed to the sameindividuals.

Results. Fifty-one health care providers were in-volved in the baseline survey. The response rates for thepostintervention survey were 100% for physicians (20 of20 subjects) and nurses (20 of 20 subjects) and 91% (10 of11 subjects) for the nurse practitioners. In the baselinesurvey, statistically significant underestimates of sur-vival rates were seen for physicians and nurses at 23 to 28weeks of gestation and for nurse practitioners at 23 to 27weeks of gestation. Statistically significant overestimatesof disability rates were seen for physicians and nursepractitioners at <26 weeks of gestation and for nurses at<28 weeks of gestation. After the intervention, respon-dents demonstrated significant improvements in the ac-curacy of survival and disability estimates at many, butnot all, gestational ages. Although underestimation ofsurvival rates and overestimation of disability rates de-creased after the intervention, it persisted to some de-

gree. After the intervention, a larger proportion of phy-sicians (53% vs 21%) and a smaller proportion of nurses(10% vs 37%) were likely to recommend resuscitation forinfants born at 23 weeks of gestation.

Conclusions. Physicians, nurses, and nurse practitio-ners underestimated survival rates and overestimatedlong-term disability rates for very premature infants. Af-ter education, their estimates of survival and long-termdisability rates for these infants improved significantly.More accurate estimates of survival and disability ratesaffected physicians’ and nurses’ theoretical decision-making regarding the appropriateness of resuscitationat 23 weeks of gestation. Pediatrics 2005;115:e478–e487.URL: www.pediatrics.org/cgi/doi/10.1542/peds.2004-1417;prematurity, outcome, counseling, educational interven-tion, decision-making.

An important component of medical manage-ment before a preterm delivery is counselingthe parents about the probabilities of survival

and of neurodevelopment and neurosensory impair-ment among preterm infants.1,2 Ideally, health careproviders from different disciplines who care forpregnant patients at risk of preterm delivery shouldcounsel expectant parents by using current statisticson perinatal survival rates and long-term outcomesof preterm infants. It was shown that the great ma-jority of mothers who experienced prenatal consul-tation found it helpful and comforting.3

In the past decade, with the rapid evolution ofobstetric imaging studies, gestational age estimateshave become more reliable, especially when earlyultrasonographic examinations are combined withmenstrual history and laboratory data. Gestationalage estimates have been shown to predict survivalrates better than estimated fetal weights4 and, be-cause they are available before delivery, are ex-tremely useful in prenatal parental counseling. Atthe borderline of current perinatal viability, suchinformation about outcomes can help the familymake well-informed choices about withholding orwithdrawal of life support for the infant.

We observed that, in our institution, there wereoften differences among health care providers intheir estimates of survival and morbidity rates forpreterm infants born at various gestational ages, es-pecially at the margin of viability. Therefore, weconducted this study to determine the accuracy ofknowledge of different health care providers aboutsurvival and long-term morbidity rates for very pre-term infants and to determine whether a focusededucational intervention could improve the accuracy

From the *Division of Neonatology, Department of Pediatrics, VermontChildren’s Hospital, University of Vermont, Burlington, Vermont; ‡MedicalUniversity of South Carolina Children’s Hospital, Charleston, South Caro-lina; and §Clinical Research Center, University of Vermont, Burlington,Vermont.Accepted for publication Nov 8, 2004.doi:10.1542/peds.2004-1417This work was presented in part at the meeting of the Pediatric AcademicSocieties; May 3–6, 2003; Seattle, WA.No conflict of interest declared.Address correspondence to Fermin Blanco, MD, Department of Pediatrics,Burgess 426, Fletcher Allen Health Care, 111 Colchester Ave, Burlington, VT05401. E-mail: fermin.blanco-filho@vtmednet.orgPEDIATRICS (ISSN 0031 4005). Copyright © 2005 by the American Acad-emy of Pediatrics.

e478 PEDIATRICS Vol. 115 No. 4 April 2005 www.pediatrics.org/cgi/doi/10.1542/peds.2004-1417 by guest on May 16, 2020www.aappublications.org/newsDownloaded from

of this knowledge and influence health care deci-sions.

METHODS

Study ParticipantsStudy participants included a variety of caregivers who com-

municate information to expectant parents frequently or otherwisemight be involved in decision-making regarding the pregnancy.They consisted of (1) a physicians group that included attendingphysicians in general pediatrics, obstetrics, and maternal-fetalmedicine and residents in general pediatrics and obstetrics, (2) anurses group that included registered nurses from the NICU, thelabor and delivery floor, and the maternity ward, and (3) a nursepractitioners group that included neonatal nurse practitioners,obstetric nurse practitioners, and certified nurse midwives. At-tending physicians and fellows from the neonatal division wereexcluded. For groups that had a total membership of �20 (nursepractitioners), we included all members of the group. For eachgroup that had �25 members (physicians and nurses), we ran-domly selected 20 individuals from each group.

Questionnaire Design and Baseline SurveyWe developed a survey that described the following hypothet-

ical case scenario. “A healthy primigravida is admitted in pretermlabor with intact membranes, an uncomplicated prenatal course,and a singleton pregnancy. Her gestational age is based on a surelast menstrual period and confirmed by an early ultrasound ex-amination at 10 weeks’ gestation. There are no obvious anomalieson ultrasound, amniotic fluid is adequate, and there are no signsof infection. The infant is born under optimal conditions at aperinatal center.”

We asked participants to provide their best estimates of odds ofsurvival with full treatment and long-term disability among sur-vivors for the type of infant described in the case scenario, at eachweek of gestation from 23 to 28 weeks and also at �23 weeks ofgestation. Survival was defined as the infant being alive at dis-charge from the hospital. Major disability was defined as thepresence of �1 of the following conditions among survivors:mental retardation/developmental delay, cerebral palsy, blind-ness, or deafness. We asked participants to indicate a specificestimate for each gestational age and not a range of possibleoutcomes. In addition, we asked the participants whether theythought it was appropriate to resuscitate and provide life supportfor infants at �23 weeks of gestation and at each week of gestationfrom 23 to 28 weeks. Participants completed the surveys immedi-ately before educational sessions (see below). The surveys wereanonymous and collected only the professional designation of theparticipant, such as “physician” or “nurse.”

InterventionWe prepared laminated, pocket-sized cards (Fig 1) that sum-

marized as bar graphs the survival rates and major disability ratesfor infants born at �23 weeks’ gestational age and at each week of

gestation between 23 and 28 weeks. Data regarding survival oddswere obtained from the Vermont Oxford Network Quality Man-agement Report for the most recent available year (2000).5 Rates ofmajor disability (Table 1) were derived from a comprehensivereview of the published literature6–18 that included cohorts fromsingle referral centers8,11,12,14,16 and from geographically definedregions.6,7,9,10,13,15,17,18 We included only long-term outcome stud-ies that reported data based on gestational age (information that ismore useful in the context of prenatal counseling); reported fol-low-up data �18 months after the estimated date of delivery, withsignificant proportions of survivors assessed (11 studies had ratesof 83-100% and 2 studies had rates of 54% and 73%); used vali-dated tools for assessment; and had similar definitions for majordisabilities, including mental retardation/neurodevelopmentaldelay, cerebral palsy, blindness, and deafness (Table 1).

The principal investigator (F.B.) conducted educational ses-sions for participants to discuss the survival and major disabilitydata mentioned above. These were either small-group sessions orperson-to-person sessions scheduled at the convenience of theparticipants and held immediately after participants completedthe baseline survey. When all of the baseline surveys were com-pleted, we provided each participant with a copy of the laminatedpocket card. We recommended that participants refer to the cardduring prenatal parental counseling before a preterm delivery.

Postintervention SurveyOne month after the last discussion session, we mailed a survey

identical to the baseline survey to all participants. Respondentscould refer to the pocket card when answering this survey andreturned the surveys by mail. All surveys were anonymous andnoted only the professional designation of the respondents.

Informed ConsentThe institutional review board of the University of Vermont at

Burlington approved this study. We obtained informed consentfrom each participant before the baseline survey.

Sample Size Calculation and Statistical AnalysesWe compared (1) baseline survey results with actual rates, (2)

postintervention survey results with actual rates, and (3) baselineresults with postintervention survey results at each week of ges-tation. In the baseline survey, we compared each provider group’smean survival and major disability estimates with the actual rates(from the Vermont Oxford Network data and the literature, re-spectively), with t tests. For this analysis, using estimates andvariability reported by Morse et al,19 we calculated that 20 subjectsper provider group would give 80% power to detect, at the 5%significance level, a difference of 15% from the actual survival anddisability rates. A difference of 25% could be detected with 10subjects per group. We anticipated that differences between groupmeans would be �15% and therefore we would not have adequatepower for comparisons between groups but would have adequatepower for within-group comparisons.

To evaluate the effect of the educational intervention, we com-

Fig 1. Front and back views of the laminated, pocket-sized card summarizing the survival rates and major disability rates for infants at�23 weeks of gestation and at every week of gestation between 23 and 28 weeks.

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e480 ENSURING ACCURATE KNOWLEDGE OF PREMATURITY OUTCOMES by guest on May 16, 2020www.aappublications.org/newsDownloaded from

pared the baseline and postintervention mean group survival andmajor disability estimates by using analysis of variance, withprovider group and time as the 2 factors. Individual comparisonswere then used to compare baseline and postintervention esti-mates within each provider group. We estimated that 20 subjectsper group would provide 80% power, at the 5% significance level,to detect a before/after difference of 12%. To evaluate the effect ofthe intervention on the participants’ views on the appropriatenessof resuscitation, we compared, with �2 tests, the percentages ofrespondents choosing “definitely resuscitate,” at each week ofgestation, before and after the intervention.

Finally, we compared each group’s mean survival and disabil-ity estimates from the postintervention survey with the actualrates by using t tests. For all comparisons listed above, we used aP value of �.05 to define statistical significance. The data wereentered into an Excel spreadsheet. Statistical testing was per-formed with SAS software (SAS Institute, Cary, NC).

RESULTS

Response RatesAll 51 health care providers selected for participa-

tion (20 physicians, 11 nurse practitioners, and 20nurses) completed the baseline survey. The responserates for the postintervention survey were 100% forphysicians (20 of 20 subjects) and nurses (20 of 20subjects) and 91% (10 of 11 subjects) for the nursepractitioners.

Survival EstimatesFigures 2 to 4 illustrate the mean survival esti-

mates at baseline and after intervention for eachprovider group, as well as the actual survival rates.In the baseline survey, the mean survival estimatesof all 3 groups were lower than the actual survivalrates, with statistically significant differences fromactual rates seen for the physicians group at 23 to 27weeks of gestation (P � .01) and 28 weeks of gesta-tion (P � .05), for the nurses group at 23 to 28 weeks

of gestation (P � .01), and for the nurse practitionersgroup at 23 weeks of gestation (P � .05), 24 to 26weeks of gestation (P � .01), and 27 weeks of gesta-tion (P � .05). In no group was the mean survivalestimate higher than the actual survival rate.

Compared with the baseline survey estimates, themean group survival estimates in the postinterven-tion survey were higher, with these before/after dif-ferences being statistically significant for the physi-cians group at 25 weeks of gestation, for the nursesgroup at 25 to 28 weeks of gestation, and for thenurse practitioners group at �23 to 27 weeks ofgestation. The P values for these before/after com-parisons are depicted in Figs 2 to 4.

In the postintervention survey, the mean survivalestimates of all 3 groups were closer to the actualrates than they were at baseline. However, comparedwith the actual rates, estimates in the physiciansgroup were still statistically lower at 23 to 24 weeksof gestation (P � .01) and 25 to 28 weeks of gestation(P � .05) and in the nurses group at 23 to 28 weeks ofgestation (P � .01). The mean postintervention sur-vival estimates for the nurse practitioners groupwere higher than the actual survival rates in somecases but with no statistically significant difference atany gestational age.

Major Disability EstimatesFigures 5 to 7 illustrate the mean major disability

estimates before and after intervention for each pro-vider group, as well as the actual rates. In the base-line survey, the mean major disability estimates ofeach group were higher than the actual rates, partic-ularly at the youngest gestational ages, with statisti-cally significant differences from the actual rates be-

Fig 2. Physicians’ (MDs) mean estimates of survival rates before and after education and “actual” survival rates for each gestationalage.

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ing noted for the physicians and nurse practitionersgroups for �23 weeks and 23 to 26 weeks of gesta-tion (P � .01) and the nurses group for �23 weeksand 23 to 28 weeks of gestation (P � .01). In no groupwas the mean major disability estimate lower thanthe actual major disability rate.

Compared with the baseline survey, the meangroup major disability estimates in the postinterven-tion survey tended to be lower, with statistically

significant differences from the baseline survey be-ing noted for the physicians group for �23 weeksand 23 to 24 weeks of gestation, for the nurses groupfor all gestational ages, and for the nurse practitionergroup for �23 weeks through 27 weeks of gestation.The P values for these before/after comparisons aredepicted in Figs 5 to 7.

In the postintervention survey, the mean majordisability estimates were closer to the actual rates

Fig 3. Nurses’ (RNs) mean estimates of survival rates before and after education and “actual” survival rates for each gestational age. For28 weeks of gestation, P � .01 for preeducation versus posteducation values.

Fig 4. Nurse practitioners’ (NPs) mean estimates of survival rates before and after education and “actual” survival rates for eachgestational age.

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than they were at baseline. However, compared withthe actual rates, estimates were still statisticallyhigher for the physicians group at �23 weeksthrough 25 weeks of gestation (P � .01) and 26 weeksof gestation (P � .05) and for the nurses group at 24to 26 weeks of gestation (P � .01). The postinterven-

tion estimates in the nurse practitioners group didnot differ significantly from the actual rates.

Appropriateness of ResuscitationAfter exposure to the educational material, differ-

ences were noted in the responses of health care

Fig 5. Physicians’ (MDs) mean estimates of major disability rates before and after education and “actual” disability rates for eachgestational age.

Fig 6. Nurses’ (RNs) mean estimates of major disability rates before and after education and “actual” disability rates for each gestationalage. For 24 to 26 weeks of gestation, P � .01 for preeducation versus posteducation values.

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providers regarding whether they thought it wasappropriate to resuscitate and provide life supportfor infants at �23 weeks of gestation. Comparedwith the baseline survey, the proportion of respon-dents in the postintervention survey who thoughtthat it was appropriate to resuscitate an infant of 23weeks’ gestational age was higher in the physiciansgroup (21% vs 53%, P � .05) but lower in the nursesgroup (37% vs 10%, P � .05). There were no otherstatistically significant differences between the base-line and postintervention surveys in the responses toappropriateness of resuscitation.

DISCUSSIONWhen a preterm delivery is expected, parental

counseling should be based on accurate data regard-ing survival rates and the likelihood of major disabil-ity among survivors at the given gestational age.This is crucial at the borderline of viability, whenmanagement options being discussed with the par-ents often include withholding or withdrawal of lifesupport.2 However, health care professionals oftendiffer in their estimates of survival and morbidityrates for preterm infants born at various gestationalages, especially at the extremes of viability.20

We found that health care providers who are in-volved routinely in the counseling and support ofparents at risk of preterm delivery, including physi-cians, nurses, and nurse practitioners, underesti-mated survival rates and overestimated long-termdisability rates. Morse et al19 reported similar find-ings. However, their survey was restricted to physi-cians, whereas ours included physicians and otherhealth care providers who participate in pretermdeliveries. Our findings indicate that health care pro-

viders may approach prenatal counseling with agloomier prognosis than is justified. Our results em-phasize the need to provide accurate knowledge ofoutcomes, especially at gestational ages bordering onviability, for which inaccurate estimates of outcomescan lead to mistaken decisions to provide or with-hold intensive care. Providers’ estimates of outcomesmay vary from actual data because of reliance onoutdated data, difficulty in recalling outcome statis-tics (especially if not used regularly), and the lack ofa readily available reference source.

Other studies19–21 evaluated health care providers’knowledge of prematurity outcomes as a componentof assessment of their attitudes toward resuscitation,without separating the inaccurate knowledge of out-comes from the process of decision-making aboutresuscitation. Any assessment of attitudes towardresuscitation is flawed if it does not ensure that theproviders have accurate knowledge regarding out-comes. Furthermore, none of those studies includedan assessment of knowledge after an educationalintervention. Ours is the first study to address solelythe accuracy of health care providers’ knowledgeregarding outcomes and to study the effect of aneducational intervention.

After education, the accuracy of estimates of sur-vival and disabilities consistently improved for the 3groups. However, providers still underestimatedsurvival rates and overestimated disability rates,which leads us to speculate that education alone maynot be sufficient to correct deficiencies in counselingknowledge and that techniques such as computer-ized decision support may be required to optimizeknowledge for counseling. Our data indicated that,when physicians improved the accuracy of their

Fig 7. Nurse practitioners’ (NPs) mean estimates of major disability rates before and after education and “actual” disability rates for eachgestational age. For �23 to 26 weeks of gestation, P � .01 for preeducation versus posteducation values.

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knowledge of outcomes, they became more inclinedto resuscitate aggressively infants at the edge of vi-ability. This finding is in accordance with previouslyreported studies by Haywood et al.21,22 It is unclearwhy nurses were less likely to intervene for theseextremely premature infants. Perhaps this tendencyis related to nurses’ greater pessimism, comparedwith physicians, regarding the chances of survivaland morbidity of prematurity.20

The strengths of our study are the high surveyresponse rate and the wide variety of health careproviders studied. Its limitations are that it was con-ducted in a single academic center and therefore theresults should be generalized cautiously to other cen-ters; we surveyed participants only 1 month after theeducation ended and therefore are uncertain aboutthe long-term duration of effect of the educationalintervention. The small number of nurse practitio-ners in our study makes a type II statistical error thelikely cause of statistically insignificant results forthat group.

We used survival statistics from the Vermont Ox-ford Network database because the data are derivedfrom nearly 30 000 very low birth weight infantsfrom a wide spectrum of NICUs. Also, because ourhospital participates in the Network, ideally provid-ers in our hospital should be aware of the Networkdata. These data are similar to the data from anotherlarge neonatal database.23 Although the Networkdata represent one of the best sources available, pro-viders who use these data for prenatal parental coun-seling should be aware of their limitations for out-come prediction. These data are not epidemiologicdata, because they are derived from a heterogeneouscollection of live-born infants of 401 to 1500 g, with awide range of risk factors for death, who were bornat or transferred to participating hospitals. The col-lection includes infants who are resuscitated with theintention of providing full life support and infantsfrom whom life support is withheld or withdrawn.

Our literature review for statistics on major dis-abilities among survivors was restricted to articles inwhich outcomes were reported according to gesta-tional age and excluded those in which outcomeswere reported according to birth weight. Studies var-ied in the proportions of survivors monitored and inthe duration of follow-up monitoring, introducingsome heterogeneity into the aggregate data. A spe-cial limitation of the outcome data at �23 and 23weeks of gestation is the lack of precision because ofsmall sample sizes, with consequent wide confidenceintervals (Table 1).

During prenatal counseling, the caveats men-tioned above should be discussed with the parents.In addition, the prognosis for a given infant shouldbe individualized on the basis of the presence ofvariables that influence outcomes, such as congenitalanomalies, chorioamnionitis, placental abruption,oligohydramnios, and prenatal steroid use. Duringpostnatal counseling, especially at the borderline ofviability, providers should remember that there is adistinction between the probability of survival of afetus and that of a newborn infant. Therefore, afterdelivery and admission of the infant for ongoing

intensive care, it is more suitable to present survivaldata based exclusively on live births.24,25

Outcome statistics are generally well received byprospective mothers of preterm infants during pre-natal consultation.3 According to published data, thechances of survival increase by 2% to 4% with eachadditional intrauterine day for gestations of 23 to 26weeks,5,15,26 and the majority of infants who surviveare free of major disabilities.27 There seems to besufficient evidence now to establish the limit of via-bility in the United States at 23 weeks of gesta-tion.28–30 What appears to hold true across publishedstudies is that survival for infants born at �23 weeksof gestation is more an exception than the rule.31–36

Survival rates for extremely low birth weight infantshave increased substantially in the past decades,37–41

but major neurologic impairments have remainedpractically unchanged.42–47 However, comparedwith normal birth weight infants, extremely lowbirth weight survivors without major impairmentsare still at greater risk of learning disabilities duringthe school years,48–51 which persist into early adult-hood.52 Health care providers must realize that atleast one half of extremely low birth weight infantswill require special education services in the fu-ture49–51,53,54 and that they are less likely than normalbirth weight control subjects to graduate from highschool. In addition, when monitored through youngadulthood, they were found to have lower mean IQscores and lower academic achievement scores.52

During prenatal counseling, the full spectrum of pos-sible outcomes, including the milder impairments,should be discussed with the family. We did notaddress the risks of such minor disabilities in ourstudy.

In our hospital, the laminated pocket cards withthe survival and disability data are now carried rou-tinely by many physicians, nurses, and nurse practi-tioners who are involved in the delivery of preterminfants. These providers report anecdotally that theyuse the data on the card during parental counselingand find it a useful aid to counseling. We aim to keepthe outcome data updated as new information be-comes available, so that consistent accurate informa-tion is provided to parents during prenatal counsel-ing. Although the outcome percentages provided onthe card may not reflect “true values,” these are themost current data available and can be used as astarting point in discussions with prospective par-ents of very premature infants.

CONCLUSIONSWe found that physicians, nurses, and nurse prac-

titioners underestimated survival rates and overesti-mated major disability rates for infants at �23 to 28weeks of gestation. After education and provision ofa pocket card containing the data, providers im-proved the accuracy of their estimates of outcomes.Improvement in knowledge about outcomes was as-sociated with increased willingness by physiciansand decreased willingness by nurses to provide re-suscitation to infants at the threshold of viability. Anational sample of health care providers from differ-ent disciplines should be surveyed to determine the

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extent of inaccuracy of outcome estimates. If thisproblem is widespread, then large-scale efforts arerequired to correct it, so that expectant parents ofpreterm infants receive counseling based on accuratedata.

ACKNOWLEDGMENTSWe are grateful to Susan Hayward for manuscript preparation

and assistance.

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DOI: 10.1542/peds.2004-14172005;115;e478Pediatrics 

Fermin Blanco, Gautham Suresh, Diantha Howard and Roger F. SollEnsuring Accurate Knowledge of Prematurity Outcomes for Prenatal Counseling

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