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Article |

Stability of Maternal Preferences for Pediatric Health States in the Perinatal Period and 1 Year Later FREE

Saroj Saigal, MD, FRCPC; Barbara L. Stoskopf, RN, MHSc; Elizabeth Burrows, MBA; David L. Streiner, PhD; Peter L. Rosenbaum, MD, FRCP
[+] Author Affiliations

From the Department of Pediatrics, McMaster University, Hamilton, Ontario (Drs Saigal and Rosenbaum and Ms Stoskopf); Center for Clinical Effectiveness, Monash University, Melbourne, Australia (Ms Burrows); and the Department of Psychiatry, University of Toronto, Toronto, Ontario (Dr Streiner).


Arch Pediatr Adolesc Med. 2003;157(3):261-269. doi:10.1001/archpedi.157.3.261.
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Published online

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, F4,288 = 87.0 [P<.001]; VLBW cohort, F4,284 = 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, F2,144 = 1.3 [P = .29]; VLBW cohort, F1,71 = 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.

Figures in this Article

ALTHOUGH SURVIVAL of extremely premature infants has improved dramatically in recent years, they remain at high risk for subsequent neurological impairments.1,2 Concerns about the possibility of a further increase in the prevalence of impairments have increased with the lowering of the threshold of viability.3,4 Many parents, health care professionals, and medical bodies are now questioning whether intensive care is justified for all infants, regardless of birth weight.59 As a result, physicians are increasingly inviting parents to share in the responsibility of decision making in the perinatal period.4,7,10 These decisions are likely to have profound immediate and long-term consequences for the family, the health care system, and society.

However, parents typically have very little understanding of the extent of uncertainty and the types of expected future outcomes for extremely preterm infants. Even when parents are involved, decisions to initiate or forgo intensive care are often made arbitrarily in the delivery room, without presenting decision alternatives, and with little insight regarding parental preferences for future outcomes. Preference in this context is used as an expression of "serious deliberation" in which values are assigned to different outcomes after a "sincere attempt to consider alternative choices of action."11 Several studies indicate that health care professionals and parents often differ in their valuation of disabling health states and in their attitudes toward saving infants of borderline viability.1215 To date, very little information is available regarding parental perspectives in terms of the quality of life of their children. We have shown that although parents of adolescent premature children (and the children themselves) provided relatively high valuation for their children's health states, despite recognition of significant functional deficits,16,17 a substantial proportion provided lower scores than the control group. However, a number of years have elapsed since they experienced the crisis of premature birth. The question therefore remains whether the preferences collected at adolescence represent preference scores of parents had they been measured in the perinatal period. The assumption that preference scores for future health states are stable is fundamental to using the information on parental preferences when making clinical decisions in the delivery room. This assumption has not been tested, particularly in the context of childbirth and infancy.

The objectives of this study were to determine whether preference-based health-related quality-of-life scores obtained serially from women with high-risk pregnancies and mothers of newborn very low-birth-weight (VLBW) infants were stable from the perinatal period through to 1 year of corrected age (CA). Preferences of women in the antenatal period are largely unknown, and it is not clear whether they differ from those obtained after the birth of an infant. In addition, the VLBW cohort was recruited because we anticipated that only a small proportion of women with high-risk pregnancies were likely to be delivered of premature infants or infants at high risk for subsequent neurodevelopmental problems. We hypothesized that preferences would be stable over time and that selected maternal sociodemographic and emotional factors, infant variables at birth, and subsequent health and neurodevelopmental problems would not affect maternal preference scores.

STUDY POPULATION
Women With High-Risk Pregnancies

A cohort of consecutive women with very high-risk pregnancies attending a tertiary care regional perinatal center clinic was identified by an obstetrician using predefined criteria (Ontario Ministry of Health Prenatal Form). We included women with incompetent cervix; women with previous history of stillbirth, neonatal death, or premature birth; and women carrying fetuses with congenital chromosomal malformations. All non–English-speaking mothers were excluded. Eligible women were approached for recruitment by a trained research assistant (B.L.S.) at antenatal visits at 24 ± 2 weeks of gestation.

Mothers of High-Risk Infants

This cohort of mothers of infants who weighed less than 1500 g at birth was recruited from consecutive admissions to the tertiary care neonatal intensive care unit at McMaster Children's Hospital, Hamilton, Ontario. Mothers of 26 infants who were facing imminent death were not approached on compassionate grounds; all of these infants died. Mothers of eligible infants were approached for consent at an approximate postnatal age of 5 to 7 days. Although it would have been desirable to approach the mothers as close to the birth of the infant as possible, our pilot experience indicated that the women would not have been receptive to this complex series of interviews. None of the respondents in either group was paid for their participation.

Refusals

The baseline characteristics of eligible candidates who refused to participate were recorded to determine whether the study sample was representative of the population.

Informed Consent

The study was approved by the Ethics Committee of Hamilton Health Sciences, McMaster University, Hamilton. Written informed consent was obtained from all respondents.

MEASURES
Maternal Sociodemographic and Emotional Measures

Information on maternal demographics, socioeconomic status (SES),18 pregnancy history, pregnancy risk category, history of infertility, planned pregnancy, and previous maternal exposure to children with disabilities was obtained at recruitment. Global assessment of maternal health (excellent, very good, good, fair, or poor) and that of her spouse and other children, and current maternal health status were obtained at each visit using the Health Utilities Index (HUI2) classification system.19

On the basis of the premise that maternal anxiety, depression, or lack of social support may have a bearing on the responses provided for the hypothetical health states, all women completed the Spielberger State-Trait Anxiety Inventory for Adults,20 which has 2 components. The State Inventory measures how one feels at present, and the Trait Inventory measures how one feels generally. They also completed the Center for Epidemiologic Studies Depression Scale21 and the Sarason Social Support Questionnaire,22 which measures the number of people one depends on and how satisfied one is with the support. These self-completed questionnaires are well validated and widely used in studies in the perinatal period.23,24

Measurement of Health-Related Quality of Life

Preference Measurement Techniques. We used the same preference measurement techniques as in previous studies from our group25 to quantify the health-related quality-of-life scores of 5 pediatric hypothetical health states. The visual analog scale (Feeling Thermometer) was administered first to introduce the respondents to the concept of preferences. The Standard Gamble (Chance Board) involves a lottery approach to measurement and provides a single cardinal utility score ranging from 0 to 1.00, where 0 indicates death and 1.00 is perfect health. This method is more accepted for measurement of preferences, particularly where uncertainty of outcomes is an important characteristic of the decision,26 and therefore only Standard Gamble data will be presented herein.

Hypothetical Health States. Five hypothetical health state descriptions based on health states reported for extremely low-birth-weight children in the 8-year study27,28 were selected for evaluation (Table 1). These descriptions were based on the HUI2 system, which has 6 attributes, each with 3 to 5 functional levels.19 These attributes were sensory perception, mobility, emotion, cognition, self-care, and pain. Each health state was given a unisex name, ie, Jamie, Chris, Alex, Sandy, and Pat.13 The health scenarios ranged from a mild single condition (Jamie and Alex) to moderate (Chris) and very severely disabling health states (Sandy and Pat). The health state descriptions were color coded for severity and presented to the respondents in random order on 4 × 6-in cards. Respondents were asked to imagine themselves living in each of the above states of health for the next 60 years. As in previous studies, we did not ask parents to value the life of their children in such health states because of the emotive responses this task might elicit. Further details of the methods and descriptions of the hypothetical health states are available in previous publications from our group.13,16

Table Graphic Jump LocationTable 1. Descriptions of Hypothetical Health States
ASSESSMENT OF INFANTS
At Birth

Severity of illness was measured on the first day of life using scores on the Clinical Risk Index for Babies measure.29 Data on birth characteristics and all neonatal problems were recorded from the medical chart after infant discharge. The mother's perception of her infant's severity of illness was obtained by asking "How ill is your child now?" and using a 7-point Likert scale (ranging from "not at all ill" to "extremely ill") at the postnatal interview.

At Follow-up

Both cohorts of infants were seen at the follow-up clinic at a CA of 12 months. The assessments were performed by a pediatrician (S.S.) and included anthropometric measurements, global assessment of the infant's health, a physical and neurological examination, and clinical judgment of the infant's developmental age. At the same visit, a research coordinator administered the Vineland Adaptive Behavior Scales30 to the mother. The Vineland Adaptive Behavior Scales, a maternal report measure, was chosen because maternal preferences are more likely to be influenced by the mother's perception of her infant. Additional information on the infant's general health, illnesses, surgery, hospitalizations, medications, vision and hearing problems, special needs, and use of special resources, and maternal concerns regarding the infant's health and development was obtained in the same visit.

INTERVIEW SCHEDULE AND ASSESSORS

The interviews were conducted in a private room at the Health Sciences Centre of McMaster University by highly trained lay professional interviewers who were masked to the medical history and the hypotheses being tested. All interviews were tape-recorded for quality control. We reviewed a random sample of the tapes to ensure strict adherence to the study protocol. The preference interview took approximately 1 hour to complete. All mothers were interviewed on the following 2 occasions: 7 to 10 days after birth and at their infant's 12-month CA visit. The pregnant women (antenatal cohort) were also interviewed at 24 ± 2 weeks' gestation.

SAMPLE SIZE ESTIMATION AND STATISTICAL ANALYSIS
Sample Size Calculations

Estimates of parameters for sample size calculations were obtained from results of reported utility measures for 3 hypothetical health states collected by Feeny et al.31,32 The mean of the SD of differences was 0.247, and the mean correlation was 0.59. The mean minimum clinically important difference in utility scores for the same hypothetical health state at different assessment points was preset at 0.075 or greater, and power was set at 80% (α = .05). Using these assumptions, we calculated the minimum required number of individual subjects with paired observations to be 63.

Statistical Analysis

Before statistical analysis, health state preference scores were transformed to scales that would take into account states rated as worse than death. The Scale for Transformed Utility Scores (Standard Gamble) was defined from 1.0 to −1.0, using the nonlinear transformation y = x/(1 − x), described by Patrick et al.33 Statistical analyses were conducted using SPSS software (Version 10.05; SPSS Inc, Chicago, Ill). We analyzed changes in preference scores among antenatal, postnatal, and 12-month follow-up visits using multivariate repeated-measures analysis of variance. We used the following model for the main analysis:

2(Time − Within Subject) × 2(Method − Within Subject) × 5(Health States − Within Subject).

The multivariate analysis of covariance was also used to determine whether infant factors (birth weight [≤1000 or >1000 g], duration of mechanical ventilation, health problems at 1 year, and visits to the emergency department) or maternal factors (educational level, history of pregnancy problems, high-risk pregnancy, anxiety/depression, and social support) influenced preferences for health states. For this multivariate analysis of covariance we used the following model:

2(Time – Within Subject) × 2(Method –Within Subject) × 5(Health States – Within Subject)

with the maternal and infant variables as covariates.

All maternal and infant variables were summarized using descriptive statistics. We compared repeated measures of continuous variables using the t test (paired). We measured interrater reliability between maternal and physician assessments of the child's health using the κ statistic. We measured intrarater reliability of maternal responses to health assessments (ie, global health, satisfaction with social support) repeated at each visit using the Spearman rank correlation. We used multivariate linear regression analysis to test whether individual health state scores (dependent variables) in the VLBW cohort were affected by maternal and neonatal variables (independent variables).

We compared participants and those who refused to participate using the t test for independent groups to compare mean differences in means, Mann-Whitney test to compare differences in medians, and χ2 analysis to compare differences in proportions. Multivariate logistic regression was conducted to identify factors that predicted a mother's consent or refusal to participate in the study.

STUDY PARTICIPANTS
Antenatal Cohort

During the recruitment period from March 1, 1998, through February 28, 1999, 80 (57%) of 140 eligible women consented to participate in the study. Most of the women who refused cited busy schedules and multiple medical appointments as the reason. The women who refused had a significantly higher pregnancy risk status (P<.001) and a lower SES (P = .002). There were no differences in their educational status or other demographic variables (maternal education and SES were available for only half of those who refused in both cohorts). By 12 months, 73 (91%) of 80 women completed all 3 interviews.

VLBW Cohort

Seventy-five (67%) of 112 eligible mothers of VLBW infants consented to participate in the study. Eleven women (30%) who refused were too busy with other responsibilities to participate; 11 (30%) were too overwhelmed and stressed; and the rest had other pressing reasons. Mothers who refused were younger (P = .03), less educated (P = .007), and in a lower SES class (P = .002) than those who consented. We found no significant differences in mean gestational age between infants of mothers who refused to participate compared with those who participated (nonparticipants, 28.5 weeks [SD, 2.8 weeks]; participants, 29.2 weeks [SD 2.5 weeks]; P = .16). We also found no differences in mean scores from the Clinical Risk Index for Babies between nonparticipants and participants (nonparticipants, 2.9 [SD, 3.1]; participants, 2.0 [SD, 2.0]; P = .09). By 12 months, 72 (96%) of 75 participants in the cohort completed both interviews.

DEMOGRAPHICS OF PARTICIPANTS AT RECRUITMENT
Maternal Characteristics

Maternal demographics for both cohorts showed predominantly white, Canadian-born women of middle-to-upper SES in a 2-parent family relationship (Table 2). Other than a slightly higher SES, the rest of the demographic characteristics are representative of the regional population.

Table Graphic Jump LocationTable 2. Demographics of Participants at Recruitment*
Birth Characteristics of Infants

Antenatal Cohort. As expected, a high proportion of infants (n = 48; 56%) were born at term. Among the infants, 9 (10%) had a birth weight of no greater than 1500 g; 1 (1%) weighed less than 1000 g; 5 (6%) had congenital abnormalities; and 6 (7%) were multiple births, resulting in 86 infants (Table 2). The mean Clinical Risk Index for Babies score was 0.2 with few neonatal complications; 17 infants (20%) underwent mechanical ventilation, and the mean hospitalization was 13 days (range, 2-41 days).

VLBW Cohort. The 21% multiple birth rate resulted in 93 infants born to 75 mothers. This cohort was moderately ill, with a mean Clinical Risk Index for Babies score of 2.0, and 80 infants (86%) who underwent mechanical ventilation. The mean duration of mechanical ventilation, including continuous positive airway pressure, was 21 days (SD, 29 days), and the mean length of hospitalization was 59 days (range, 24-131 days).

Maternal Anxiety, Depression, and Social Support

Antenatal Cohort. Spielberger Trait scores were measured only once at 24 weeks of gestation for the antenatal cohort and at the first interview only for the VLBW cohort; the scores were in the middle range for both cohorts. Maternal State anxiety and depression scores decreased significantly from the antenatal period to the 12-month visit (Table 3). Spielberger State anxiety scores did not decrease significantly from the antenatal to postnatal visits or the postnatal to 12-month visits; however, we found a mean decrease of 5 points between the antenatal and 12-month visits (95% confidence interval [CI], –7.2 to –2.8; P<.001). Mean depression scores did not differ significantly between the antenatal and postnatal visits. However, we found significant decreases in scores between the antenatal and 12-month scores (mean difference, −2.8; 95% CI, –5.1 to –0.7; P = .03), and between the postnatal and 12-month scores (mean difference, −5.3; 95% CI, –8.2 to –2.6; P<.001). We found no change in mean scores for satisfaction with social support across the 3 assessment times.

Table Graphic Jump LocationTable 3. Longitudinal Data on Anxiety, Depression, and Social Support Assessments

VLBW Cohort. Maternal State anxiety and depression scores decreased significantly from the initial postnatal period to the 12-month follow-up visit (Table 3). Maternal State anxiety scores decreased by an average 8.6 points (95% CI, −11.6 to −5.6; P<.001), and maternal depression scores declined by an average of 9.5 points (95% CI, −12.1 to −7.1; P<.001). Again, measures of social support did not change over time.

INFANT CHARACTERISTICS AT 12-MONTH FOLLOW-UP
Antenatal Cohort

Eighty-one (94%) of 86 infants were seen at the 12-month visit (Table 4). Most mothers and clinicians (>85%) rated the infants' health as excellent or very good, and there was moderate agreement between these assessors (κ = 0.48); 75 mothers (93%) had no concerns about their infant's development. Almost half the infants had experienced some illness in the first year of life (n = 39) and had visited the emergency department (n = 32); only 7 (9%) had experienced overnight hospitalization. Approximately one third of infants had required visits to medical specialists, but used few other special resources. All infants had normal neurological findings except for 1 infant who required a hearing aid. Clinical assessment of mental and motor developmental age concurred with age at the visit. The Vineland Adaptive Behavior Scales scores and composite scores were all within the reference range.

Table Graphic Jump LocationTable 4. Infant Assessments at 12-Month CA Follow-Up*
VLBW Cohort

Ninety (97%) of 93 VLBW infants were seen at the 12-month CA visit (Table 4). Global health assessment was excellent to very good for most infants as judged by the mothers (n = 75; 83%) and clinicians (n = 66; 73%), and agreement was good between these assessors (κ = 0.49). Nine mothers had concerns about their infants' delayed motor development, and 1 mother for motor and mental delays. More than half of the VLBW infants (n = 50; 56%) had experienced some illness in the first year of life; 18 infants (20%) had been hospitalized overnight; and emergency department visits were common. Use of special resources was high (73 infants [81%]), predominantly with visits to medical specialists, followed by use of infant stimulation programs and physiotherapy or occupational therapy services. Most infants had normal physical and neurological assessments. Only 5 infants had neurological problems. Three infants wore glasses and 1 had a hearing aid. The clinicians' mean ratings of the infants' developmental age of 11.7 months (SD, 1.2 months) for mental abilities and 11.4 months (SD, 1.6 months) for motor skills were significantly lower (P<.001) than the actual mean CA of 12.2 months at the time of assessment. The Vineland Adaptive Behavior Scales showed scores within the reference range for each dimension.

STABILITY OF PREFERENCES FOR HEALTH STATES
Antenatal Cohort

Mothers' preferences for individual health states were compared at 3 time periods (Figure 1). Standard Gamble ratings were affected by differences in health states (F4,288 = 87.0; P<.001), but did not change over time (F2,144 = 1.3; P = .29). Intraclass correlations (r = 0.99) indicated high agreement among participants in the strength of their preferences for individual health scenarios. Thus, in general, health scenarios that described milder disabilities were consistently given the highest ratings (Jamie and Alex). The scenario describing moderate disability (Chris) was consistently assigned intermediate preferences scores, and scenarios with severe disabilities (Sandy and Pat) were consistently given the lowest ratings. The variability in scores was greater for the most severely disabling health states with wide SDs for both cohorts (Table 5). The proportion of women who rated 1 or more health states to be equal to or worse than death was not different across the 3 time periods (36/80 [45%], 29/76 [38%], and 30/73 [41%] for the antenatal, postnatal, and 12-month CA visit, respectively).

Place holder to copy figure label and caption

Mean utility scores over time for 5 hypothetical health states obtained from the antenatal (A) and very low-birth-weight (VLBW) (B) cohorts of women. CA indicates corrected age. The hypothetical health states are described in Table 1.

Graphic Jump Location
Table Graphic Jump LocationTable 5. Longitudinal Data on Utility Scores for Hypothetical Health States*
VLBW Cohort

Mothers' preferences for individual health states at the infants' 12-month CA visit were compared with their initial preferences measured at the postnatal visit (Figure 1). As with the antenatal cohort, Standard Gamble ratings were affected by differences in the severity of health states (F4,284 = 64.2; P<.001), but did not change over time (F1,71 = 0.7; P = .42) (Table 5). Intraclass correlations (r = 0.95) indicated high agreement among participants in the strength of their preferences for individual health scenarios. The proportion of women who rated 1 or more health states to be equal to or worse than death was not different between the 2 time periods (35/72 [49%] vs 32/72 [44%]).

Comparison of Antenatal and VLBW Cohorts

Repeated-measures analysis showed no differences between the 2 cohorts in preference scores for the 5 hypothetical health states obtained at the postnatal and 12-month follow-up visits (F1,143 = 0.54; P = .46).

EFFECTS OF MATERNAL, NEONATAL, AND INFANT VARIABLES ON PREFERENCES FOR HEALTH STATES

Multivariate repeated-measures analysis of variance and regression analysis were used to assess the effects of selected neonatal and maternal variables on the stability of preference scores obtained longitudinally. To deal with the problem of statistical analysis arising from the inclusion of multiple births, a computer-generated table of random numbers was used to select one of the twins or one of the triplets for inclusion.

Maternal Variables

The stability of preference scores in both cohorts was not affected by maternal education level (antenatal cohort, F1,71 = 0.6 [P = .4]; VLBW cohort, F1,70 = 3.0 [P = .09]) or a poor outcome in previous pregnancy (antenatal cohort, F1,71 = 2.0 [P = .2]; VLBW cohort, F1,70 = 2.5 [P = .1]). Regression analysis on the impact of depression, anxiety, social support, maternal perception of her own global health, and maternal perception of the infant's severity of illness did not show any effect on maternal preference scores for hypothetical health states for either cohort (P>.05 for all).

Neonatal and Infant Variables

Maternal Standard Gamble preference scores for either cohort were not affected by birth weight (antenatal cohort, not applicable because birth weight in only 1 infant was <1000 g; VLBW cohort, F1,70 = 0.5 [P = .5]), duration of mechanical ventilation (antenatal cohort, F1,71 = 0 [P = .97]; VLBW cohort, F2,69 = 1.5 [P = .2]), infant health problems (antenatal cohort, F1,71 = 0.7 [P = .4]; VLBW cohort, F1,70 = .01 [P = .9]), or emergency department visits (antenatal cohort, F1,71 = 1.2 [P = .3]; VLBW cohort, F1,69 = 0.14 [P = .7]).

The clinical acuity and emotional intensity around the period of birth and the first few days of life for infants of borderline viability make decision making at this point particularly difficult, complex, and challenging for parents and health care professionals. The recent increasing involvement of consumers and parents in this joint endeavor requires us to have a better understanding of parental preferences.4,7,10 However, limited information exists about how parents view the quality of life for different health outcomes in childhood, and we have no knowledge of whether parental preferences at critical moments in the perinatal period are stable over time, or whether other factors such as life experiences influence recalibration of them.17 In this study, therefore, we sought to answer these questions using real-life players (mothers who experienced high-risk pregnancies or who were delivered of high-risk infants), mimicking real-life clinical practice (discussing probabilities of different health outcomes at critical phases of family experiences), and using realistic scenarios (hypothetical health states derived from actual clinical states experienced by premature infants).

We have shown that maternal preferences for health states measured over time using the Standard Gamble technique were stable between the antenatal period, immediate postnatal period, and up to 1 year later. Preference scores provided by the 2 cohorts of women for each hypothetical health state tended to mirror one another. Preference scores were affected only by the severity of the individual health states. The ratings appear realistic for the type of the health state (ie, severely disabling health states were consistently given the lowest scores). The 2 most disabling health states (Pat and Sandy) elicited the most variability in scores, and nearly one third of the mothers consistently rated 1 or more of these health states as worse than death. The mean change in scores between assessments for the same health states did not exceed the preset minimally important difference of 0.075 in either cohort (except for 1 value for Pat in the antenatal cohort, which may be a chance finding). Overall, the scores for the individual hypothetical health states are remarkably similar to those provided by other respondents (adolescents born prematurely or at term, their parents, and health care professionals) in previous studies.13,16,17

We know very little about the factors that shape and influence preferences.11,13,16,17 In this study, we explored the effects of a wide array of maternal and infant variables on stability of preference scores for hypothetical health states. Variables were chosen on the basis of literature review and our collective clinical judgment. Despite higher levels of anxiety and depression around the birth of the infant and the subsequent decline of these levels a year later, none of the maternal or infant variables appear to have had any impact on the change in preference scores. Because of the small number of infants with neurological impairments, we were unable to answer the question of whether personal experience with disabilities in this pregnancy had any effect on preference scores. Nevertheless, we believe that knowledge about the stability of maternal preferences over time at different critical phases through pregnancy, childbirth, and the first year are useful.

A complex study such as this, which requires a commitment to lengthy serial interviews at extremely stressful periods in the life of women, is very difficult to conduct. This is reflected in the less-than-optimal consent rate of subjects during recruitment (despite our vast experience in this field), where at least one third of women declined to participate. However, once they agreed to participate, compliance and retention were excellent. Although the reasons for nonparticipation were generally lack of time or other priorities, the participants were somewhat better educated and of a higher social class than the nonparticipants. We recognize that this bias in ascertainment may limit the generalizability of our findings. Despite our best efforts, we found that it was virtually impossible to assess all subgroups of interest. We are somewhat reassured by the report that little of the variability in preference scores is explained by sociodemographic characteristics of respondents.34

Another limitation of our study is that preferences were elicited only from mothers. Our reliance on the mothers is in no way meant to undermine the importance of fathers in decision making. However, logistic reasons (we anticipated that compliance by fathers would be even more challenging) and funding constraints precluded us from including both sets of parents. Although the literature is sparse in this area, analysis of data from 3 surveys showed that the sex of parents is not an important factor in explaining interrater variability in preference scores.34 Another study showed important differences in mean scores among families, but not between parents within a family.35 Future studies in this field should incorporate preferences from both parents, parents whose infants die, parents of different ethnic groups and social classes, and parents of children with severe disabilities.

A literature review suggests that few studies exist in which preferences have been obtained from parents in the perinatal period.32,3638 Stability of preferences, however, has been studied extensively with regard to life-sustaining treatments among the elderly. These studies showed that most patients who chose to forgo life-sustaining treatments did not change their choices with time and generally supported the use of advance directives,3943 whereas others recommended periodic reassessments of patients for life-sustaining care.44,45 Several other investigators have shown that even in the face of changes in health status, the evaluations in patients with cancer and human immunodefiency virus infection remained stable throughout the course of treatment.4650 The findings of stability of preferences of patients over time are reassuring if such models are to be incorporated into decision analysis. However, Llewellyn-Thomas et al49 caution against generalization of their findings to other clinical contexts.

To our knowledge, this is the first time that maternal preferences regarding disabling health states have been obtained in the perinatal period. Despite some limitations, our study adds substantially to the understanding of preferences at critical moments in the life of parents. Although parental preferences may be in a state of evolution during the course of pregnancy and after childbirth, we have shown that even under conditions of stress and anxiety, preferences are remarkably stable during this period and 1 year later. The absence of significant variation in maternal values by sociodemographic, neonatal, and intrapsychic factors also speaks to the likelihood that these values and preferences are relatively robust and are not subject to external forces that might in the past have been assumed to be important determinants of these values. In an era of family-centered care, it has become important, within the bounds of ethical practice, to solicit the perspectives and listen to the wishes of parents and families.51 Collaborative decision making is increasingly advocated as an ideal model in life-threatening situations and where a high probability of an ambiguous outcome exists, as in the case of infants of borderline viability.15,16,52 Service providers, therefore, have an increasing obligation to seek, understand, and use parental values and wishes in shared decision making in the perinatal period.

Corresponding author and reprints: Saroj Saigal, MD, FRCPC, Department of Pediatrics, McMaster University, 1200 Main St W, Room 4G 40, Hamilton, Ontario, Canada L8S 4J9 (e-mail: saigal@mcmaster.ca).

Accepted for publication September 26, 2002.

This study was funded by grant MT 14427 from Medical Research Council of Canada, Ottawa, Ontario, and grant XG 98-051 from the Hospital for Sick Children's Foundation, Toronto, Ontario.

We are extremely grateful to the women who participated in this study at very stressful periods in their lives. We would like to acknowledge the contributions of David Feeny, PhD, University of Alberta, Edmonton, and William Furlong, MSc, McMaster University, Hamilton, in the design of this study and for their helpful comments; Barbara Brennan, MD, and the staff of the Antenatal Clinic, and the staff of the neonatal intensive care unit of McMaster University Medical Centre for their assistance in recruitment of the subjects; Lorraine Hoult for her assistance in conducting the study; Liz Merz for tracking the subjects; Victoria Donnelly, MPhil, for data entry and data verification tasks; and Diane Turcotte for typing the manuscript. We appreciate the support of the Department of Pediatrics and McMaster Children's Hospital, Hamilton.

What This Study Adds

This is the first time, to our knowledge, that maternal preferences regarding disabling health states have been obtained in the antenatal and perinatal periods. We have shown that even under stressful conditions, preferences were remarkably stable during the first year after birth. Service providers, therefore, have an increasing obligation to elicit and consider parental values in decision making.

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De Leeuw  RCuttini  MNadai  M  et al.  Treatment choices for extremely preterm infants: an international perspective. J Pediatr. 2000;137608- 616
Harrison  H Neonatal intensive care: parents' role in ethical decision making. Birth. 1986;13165- 175
Doron  MWVeness-Meehan  KAMargolis  LHHoloman  EMStiles  AD Delivery room resuscitation decisions for extremely premature infants. Pediatrics. 1998;102574- 582
Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada, Management of the woman with threatened birth of an infant of extremely low gestational age. CMAJ. 1994;151547- 553
American Academy of Pediatrics, Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists, Committee on Obstetric Practice, Perinatal care at the threshold of viability. Pediatrics. 1995;96974- 976
Finer  NNBarrington  KJ Decision-making in delivery room resuscitation [commentary]. Pediatrics. 1998;102644- 645
Sutherland  HJ Assessing patients' preferences [editorial]. Med Decis Making. 1995;15286- 287
Lee  SKPenner  PLCos  M Comparison of the attitudes of health care professionals and parents toward active treatment of very low-birth-weight infants. Pediatrics. 1991;88110- 114
Saigal  SStoskopf  BFeeny  D  et al.  Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;2811991- 1997
Streiner  DSaigal  SBurrows  EStoskopf  BRosenbaum  P Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108152- 157
Saigal  SBurrows  EStoskopf  BRosenbaum  PStreiner  D Impact of extreme prematurity on families of adolescent children. J Pediatr. 2000;137701- 706
Saigal  SFeeny  DRosenbaum  PFurlong  WBurrows  EStoskopf  B Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA. 1996;276453- 459
Saigal  SRosenbaum  PFeeny  D  et al.  Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics. 2000;105569- 574
Hollingshead  AB Four factor index of social status. Located at Department of Sociology, Yale University, New Haven, Conn. Unpublished working paper1975;
Feeny  DFurlong  WBarr  RDTorrance  GWRosenbaum  PWeitzman  S A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol. 1992;10923- 928
Spielberger  CDGorsuch  RLLushene  RVagg  PRJacobs  GA State-Trait Anxiety Inventory for Adults.  Palo Alto, Calif Consulting Psychologists Press1983;
Devins  GMOrme  CMCostello  CG  et al.  Measuring depressive symptoms in illness populations: psychometric properties of the Center for Epidemiologic Studies Depression (CES-D) Scale. Psychol Health. 1988;2139- 156
Sarason  IGLevine  HMBasham  RBSarason  BR Assessing social support: the Social Support Questionnaire. J Pers Soc Psychol. 1983;44127- 139
Shields-Poe  DPinelli  J Variables associated with parental stress in neonatal intensive care units. Neonatal Netw. 1997;1629- 37
Barnett  BParker  G Possible determinants, correlates and consequences of high levels of anxiety in primiparous mothers. Psychol Med. 1986;16177- 185
Torrance  GWFurlong  WFeeny  DBoyle  M Multi-attribute preference functions: Health Utilities Index. Pharmacoeconomics. 1995;7503- 520
Torrance  GW Social preferences for health states: an empirical evaluation of three measurement techniques. Socioecon Plann Sci. 1976;10129- 136
Saigal  SRosenbaum  PStoskopf  B  et al.  Comprehensive assessment of the health status of extremely low-birth-weight children at eight years of age: comparison with a reference group. J Pediatr. 1994;125411- 417
Saigal  SFeeny  DFurlong  WRosenbaum  PBurrows  ETorrance  G Comparison of the health-related quality of life of extremely low-birth-weight children and a reference group of children at age eight years. J Pediatr. 1994;125418- 425
Cockburn  FCooke  RWIGamsu  HR  et al. for the International Neonatal Network, The CRIB (Clinical Risk Index for Babies) score: a tool for assessing initial neonatal risk and comparing performance of neonatal intensive care units. Lancet. 1993;342193- 198
Sparrow  SSBalla  DACicchetti  DV Vineland Adaptive Behavior Scales, Interview Edition.  Circle Pines, Minn American Guidance Service Inc1984;
Feeny  DTorrance  GWFuller  PJTomkins  DJRoberts  RRobinson  GE Economic evaluation and quality-of-life assessment of prenatal diagnosis: chorionic villi sampling versus amniocentesis: final report to the Ontario Ministry of Health for project 6606-3271-57. Located at McMaster University, Hamilton, Ontario March1990;
Harris  RAWashington  AEFeeny  DKuppermann  M Decision analysis of prenatal testing for chromosomal disorders: what do the preferences of pregnant women tell us? Genet Test. 2001;523- 32
Patrick  DLStarks  HECain  KCUhlmann  RFPearlman  RA Measuring preferences for health states worse than death. Med Decis Making. 1994;149- 18
Furlong  WJ Variability of Utility Scores for Health States Among General Population Groups [master's thesis].  Hamilton, Ontario McMaster University1996;
Cadman  DGoldsmith  CTorrance  GBoyle  MFurlong  W Development of a Health Status Index for Ontario Children: Final Report to the Ontario Ministry of Health.  Toronto Ontario Ministry of Health1986;Research grant DM 648 (00633).
Vandenbussche  FPDe Jong-Potjer  LCStiggelbout  AMLe Cessie  SKeirse  MJ Differences in the valuation of birth outcomes among pregnant women, mothers, and obstetricians. Birth. 1999;26178- 183
Christensen-Szalanski  JJJ Discount functions and the measurement of patients' values: women's decisions during childbirth. Med Decis Making. 1984;447- 58
Munstedt  Kvon Georgi  REichel  VKullmer  UZygmunt  M Wishes and expectations of pregnant women and their partners concerning delivery. J Perinat Med. 2000;28482- 490
Emanuel  LLEmanuel  EJStoeckle  JDHummel  LRBarry  MJ Advance directives: stability of patients' treatment choices. Arch Intern Med. 1994;154209- 217
Danis  MGarrett  JHarris  RPatrick  DL Stability of choices about life-sustaining treatments. Ann Intern Med. 1994;120567- 573
Carmel  SMutran  EJ Stability of elderly persons' expressed preferences regarding the use of life-sustaining treatments. Soc Sci Med. 1999;49303- 311
Berger  JTMajerovitz  D Stability of preferences for treatment among nursing home residents. Gerontologist. 1998;38217- 223
Everhart  MAPearlman  RA Stability of patient preferences regarding life-sustaining treatments. Chest. 1990;97159- 164
Weissman  JSHaas  JSFowler  FJ  et al.  The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study. Med Decis Making. 1999;1916- 26
Gready  RMDitto  PHDanks  JHCoppola  KMLockhart  LKSmucker  WD Actual and perceived stability of preferences for life-sustaining treatment. J Clin Ethics. 2000;11334- 346
O'Connor  AMCBoyd  NFWarde  PStolbach  LTill  JE Eliciting preferences for alternative drug therapies in oncology: influence of treatment outcome description, elicitation technique and treatment experience on preferences. J Chronic Dis. 1987;40811- 818
Tsevat  JSolzan  JGKuntz  KM  et al.  Health values of patients infected with human immunodeficiency viruses: relationship to mental health and physical functioning. Med Care. 1996;3444- 57
Llewellyn-Thomas  HASutherland  JCiampi  AEtezadi-Amoli  JBoyd  NFTill  JE The assessment of values in laryngeal cancer: reliability of measurement methods. J Chronic Dis. 1984;37283- 291
Llewellyn-Thomas  HASutherland  HJThiel  EC Do patients' evaluation of a future health state change when they actually enter that state? Med Care. 1993;311002- 1012
Jansen  SJKievit  JNooij  MAStiggelbout  AM Stability of patients' preferences for chemotherapy: the impact of experience. Med Decis Making. 2001;21295- 306
Harrison  H The principles for family-centered neonatal care. Pediatrics. 1993;92643- 650
Fost  N Decisions regarding treatment of seriously ill newborns [editorial]. JAMA. 1999;2812041- 2043

Figures

Place holder to copy figure label and caption

Mean utility scores over time for 5 hypothetical health states obtained from the antenatal (A) and very low-birth-weight (VLBW) (B) cohorts of women. CA indicates corrected age. The hypothetical health states are described in Table 1.

Graphic Jump Location

Tables

Table Graphic Jump LocationTable 1. Descriptions of Hypothetical Health States
Table Graphic Jump LocationTable 2. Demographics of Participants at Recruitment*
Table Graphic Jump LocationTable 3. Longitudinal Data on Anxiety, Depression, and Social Support Assessments
Table Graphic Jump LocationTable 4. Infant Assessments at 12-Month CA Follow-Up*
Table Graphic Jump LocationTable 5. Longitudinal Data on Utility Scores for Hypothetical Health States*

References

Wood  NSMarlow  NCosteloe  KGibson  ATWilkinson  ARfor the EPICure Study Group, Neurologic and developmental disability after extremely preterm birth. N Engl J Med. 2000;343378- 384
Vohr  BRWright  LLDusick  AM  et al.  Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Neonatal Research Network, 1993-1994. Pediatrics. 2000;1051216- 1226
Hack  MFanaroff  AA Outcomes of extremely immature infants: a perinatal dilemma [editorial]. N Engl J Med. 1993;3291649- 1650
Cole  FS Extremely preterm birth: defining the limits of hope [editorial]. N Engl J Med. 2000;343429- 430
De Leeuw  RCuttini  MNadai  M  et al.  Treatment choices for extremely preterm infants: an international perspective. J Pediatr. 2000;137608- 616
Harrison  H Neonatal intensive care: parents' role in ethical decision making. Birth. 1986;13165- 175
Doron  MWVeness-Meehan  KAMargolis  LHHoloman  EMStiles  AD Delivery room resuscitation decisions for extremely premature infants. Pediatrics. 1998;102574- 582
Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, Society of Obstetricians and Gynaecologists of Canada, Management of the woman with threatened birth of an infant of extremely low gestational age. CMAJ. 1994;151547- 553
American Academy of Pediatrics, Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists, Committee on Obstetric Practice, Perinatal care at the threshold of viability. Pediatrics. 1995;96974- 976
Finer  NNBarrington  KJ Decision-making in delivery room resuscitation [commentary]. Pediatrics. 1998;102644- 645
Sutherland  HJ Assessing patients' preferences [editorial]. Med Decis Making. 1995;15286- 287
Lee  SKPenner  PLCos  M Comparison of the attitudes of health care professionals and parents toward active treatment of very low-birth-weight infants. Pediatrics. 1991;88110- 114
Saigal  SStoskopf  BFeeny  D  et al.  Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;2811991- 1997
Streiner  DSaigal  SBurrows  EStoskopf  BRosenbaum  P Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108152- 157
Saigal  SBurrows  EStoskopf  BRosenbaum  PStreiner  D Impact of extreme prematurity on families of adolescent children. J Pediatr. 2000;137701- 706
Saigal  SFeeny  DRosenbaum  PFurlong  WBurrows  EStoskopf  B Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA. 1996;276453- 459
Saigal  SRosenbaum  PFeeny  D  et al.  Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics. 2000;105569- 574
Hollingshead  AB Four factor index of social status. Located at Department of Sociology, Yale University, New Haven, Conn. Unpublished working paper1975;
Feeny  DFurlong  WBarr  RDTorrance  GWRosenbaum  PWeitzman  S A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol. 1992;10923- 928
Spielberger  CDGorsuch  RLLushene  RVagg  PRJacobs  GA State-Trait Anxiety Inventory for Adults.  Palo Alto, Calif Consulting Psychologists Press1983;
Devins  GMOrme  CMCostello  CG  et al.  Measuring depressive symptoms in illness populations: psychometric properties of the Center for Epidemiologic Studies Depression (CES-D) Scale. Psychol Health. 1988;2139- 156
Sarason  IGLevine  HMBasham  RBSarason  BR Assessing social support: the Social Support Questionnaire. J Pers Soc Psychol. 1983;44127- 139
Shields-Poe  DPinelli  J Variables associated with parental stress in neonatal intensive care units. Neonatal Netw. 1997;1629- 37
Barnett  BParker  G Possible determinants, correlates and consequences of high levels of anxiety in primiparous mothers. Psychol Med. 1986;16177- 185
Torrance  GWFurlong  WFeeny  DBoyle  M Multi-attribute preference functions: Health Utilities Index. Pharmacoeconomics. 1995;7503- 520
Torrance  GW Social preferences for health states: an empirical evaluation of three measurement techniques. Socioecon Plann Sci. 1976;10129- 136
Saigal  SRosenbaum  PStoskopf  B  et al.  Comprehensive assessment of the health status of extremely low-birth-weight children at eight years of age: comparison with a reference group. J Pediatr. 1994;125411- 417
Saigal  SFeeny  DFurlong  WRosenbaum  PBurrows  ETorrance  G Comparison of the health-related quality of life of extremely low-birth-weight children and a reference group of children at age eight years. J Pediatr. 1994;125418- 425
Cockburn  FCooke  RWIGamsu  HR  et al. for the International Neonatal Network, The CRIB (Clinical Risk Index for Babies) score: a tool for assessing initial neonatal risk and comparing performance of neonatal intensive care units. Lancet. 1993;342193- 198
Sparrow  SSBalla  DACicchetti  DV Vineland Adaptive Behavior Scales, Interview Edition.  Circle Pines, Minn American Guidance Service Inc1984;
Feeny  DTorrance  GWFuller  PJTomkins  DJRoberts  RRobinson  GE Economic evaluation and quality-of-life assessment of prenatal diagnosis: chorionic villi sampling versus amniocentesis: final report to the Ontario Ministry of Health for project 6606-3271-57. Located at McMaster University, Hamilton, Ontario March1990;
Harris  RAWashington  AEFeeny  DKuppermann  M Decision analysis of prenatal testing for chromosomal disorders: what do the preferences of pregnant women tell us? Genet Test. 2001;523- 32
Patrick  DLStarks  HECain  KCUhlmann  RFPearlman  RA Measuring preferences for health states worse than death. Med Decis Making. 1994;149- 18
Furlong  WJ Variability of Utility Scores for Health States Among General Population Groups [master's thesis].  Hamilton, Ontario McMaster University1996;
Cadman  DGoldsmith  CTorrance  GBoyle  MFurlong  W Development of a Health Status Index for Ontario Children: Final Report to the Ontario Ministry of Health.  Toronto Ontario Ministry of Health1986;Research grant DM 648 (00633).
Vandenbussche  FPDe Jong-Potjer  LCStiggelbout  AMLe Cessie  SKeirse  MJ Differences in the valuation of birth outcomes among pregnant women, mothers, and obstetricians. Birth. 1999;26178- 183
Christensen-Szalanski  JJJ Discount functions and the measurement of patients' values: women's decisions during childbirth. Med Decis Making. 1984;447- 58
Munstedt  Kvon Georgi  REichel  VKullmer  UZygmunt  M Wishes and expectations of pregnant women and their partners concerning delivery. J Perinat Med. 2000;28482- 490
Emanuel  LLEmanuel  EJStoeckle  JDHummel  LRBarry  MJ Advance directives: stability of patients' treatment choices. Arch Intern Med. 1994;154209- 217
Danis  MGarrett  JHarris  RPatrick  DL Stability of choices about life-sustaining treatments. Ann Intern Med. 1994;120567- 573
Carmel  SMutran  EJ Stability of elderly persons' expressed preferences regarding the use of life-sustaining treatments. Soc Sci Med. 1999;49303- 311
Berger  JTMajerovitz  D Stability of preferences for treatment among nursing home residents. Gerontologist. 1998;38217- 223
Everhart  MAPearlman  RA Stability of patient preferences regarding life-sustaining treatments. Chest. 1990;97159- 164
Weissman  JSHaas  JSFowler  FJ  et al.  The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study. Med Decis Making. 1999;1916- 26
Gready  RMDitto  PHDanks  JHCoppola  KMLockhart  LKSmucker  WD Actual and perceived stability of preferences for life-sustaining treatment. J Clin Ethics. 2000;11334- 346
O'Connor  AMCBoyd  NFWarde  PStolbach  LTill  JE Eliciting preferences for alternative drug therapies in oncology: influence of treatment outcome description, elicitation technique and treatment experience on preferences. J Chronic Dis. 1987;40811- 818
Tsevat  JSolzan  JGKuntz  KM  et al.  Health values of patients infected with human immunodeficiency viruses: relationship to mental health and physical functioning. Med Care. 1996;3444- 57
Llewellyn-Thomas  HASutherland  JCiampi  AEtezadi-Amoli  JBoyd  NFTill  JE The assessment of values in laryngeal cancer: reliability of measurement methods. J Chronic Dis. 1984;37283- 291
Llewellyn-Thomas  HASutherland  HJThiel  EC Do patients' evaluation of a future health state change when they actually enter that state? Med Care. 1993;311002- 1012
Jansen  SJKievit  JNooij  MAStiggelbout  AM Stability of patients' preferences for chemotherapy: the impact of experience. Med Decis Making. 2001;21295- 306
Harrison  H The principles for family-centered neonatal care. Pediatrics. 1993;92643- 650
Fost  N Decisions regarding treatment of seriously ill newborns [editorial]. JAMA. 1999;2812041- 2043

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