Risk factors for food insecurity and association with prenatal care utilization among women who took opioids during pregnancy.

Background: Food insecurity during pregnancy is associated with poorer outcomes for both mothers and their newborns. Given the ongoing opioid crisis in the United States, mothers who take opioids during pregnancy may be at particular risk of experiencing food insecurity. Methods: This research utilized data from 254 biological mothers of infants in the Advancing Clinical Trials in Neonatal Opioid Withdrawal Syndrome (ACT NOW) Outcomes of Babies with Opioid Exposure (OBOE) Study. We examined factors associated with food insecurity among mothers of infants with antenatal opioid exposure and their unexposed (control) counterparts. Chi-square tests and logistic regression were used to compare food insecurity by sociodemographic characteristics, opioid use, prior traumatic experiences, and housing instability. Similar analyses were conducted to examine the relationship between food insecurity during pregnancy and receipt of adequate prenatal care. Results: Overall, 58 (23%) of the mothers screened positive for food insecurity. Food insecurity was more common among mothers who took opioids during pregnancy (28% vs. 14%; p =0.007), had public insurance (25% vs. 8%; p = 0.027), had housing instability (28% vs. 11%, p = 0.002), experienced three or more adverse experiences in their childhood (37% vs. 17%; p < 0.001), and reported physical or emotional abuse during their pregnancy (44% vs. 17%; p < 0.001). Mothers with food insecurity during pregnancy were less likely to have received adequate prenatal care (78% vs. 90%; p = 0.020). This difference remained after controlling for demographic characteristics (AOR (95% CI) = 0.39 (0.16, 1.00), p = 0.049). Conclusions: This study adds to the body of evidence supporting the need for screening and development of interventions to address food insecurity during pregnancy, particularly among mothers of infants with antenatal opioid exposure, for which limited data are available. The findings revealed that food insecurity frequently co-occurs with housing instability and prior trauma, indicating that a multifaceted intervention incorporating principles of trauma-informed health care is needed. Although those with food insecurity are at increased risk for poor pregnancy outcomes, they were less likely to have received adequate prenatal care despite high levels of public insurance coverage among study participants, suggesting additional strategies are needed to address barriers to health care among this population. Trial registration: The Outcomes of Babies with Opioid Exposure (OBOE) Study is registered at Clinical Trials.gov (NCT04149509) (04/11/2019).

Social Determinants of Health and Redirection of Care for Infants Born Extremely Preterm.

Importance: Redirection of care refers to withdrawal, withholding, or limiting escalation of treatment. Whether maternal social determinants of health are associated with redirection of care discussions merits understanding. Objective: To examine associations between maternal social determinants of health and redirection of care discussions for infants born extremely preterm. Design, Setting, and Participants: This is a retrospective analysis of a prospective cohort of infants born at less than 29 weeks' gestation between April 2011 and December 2020 at 19 National Institute of Child Health and Human Development Neonatal Research Network centers in the US. Follow-up occurred between January 2013 and October 2023. Included infants received active treatment at birth and had mothers who identified as Black or White. Race was limited to Black and White based on service disparities between these groups and limited sample size for other races. Maternal social determinant of health exposures were education level (high school nongraduate or graduate), insurance type (public/none or private), race (Black or White), and ethnicity (Hispanic or non-Hispanic). Main Outcomes and Measures: The primary outcome was documented discussion about redirection of infant care. Secondary outcomes included subsequent redirection of care occurrence and, for those born at less than 27 weeks' gestation, death and neurodevelopmental impairment at 22 to 26 months' corrected age. Results: Of the 15 629 infants (mean [SD] gestational age, 26 [2] weeks; 7961 [51%] male) from 13 643 mothers, 2324 (15%) had documented redirection of care discussions. In unadjusted comparisons, there was no significant difference in the percentage of infants with redirection of care discussions by race (Black, 1004/6793 [15%]; White, 1320/8836 [15%]) or ethnicity (Hispanic, 291/2105 [14%]; non-Hispanic, 2020/13 408 [15%]). However, after controlling for maternal and neonatal factors, infants whose mothers identified as Black or as Hispanic were less likely to have documented redirection of care discussions than infants whose mothers identified as White (Black vs White adjusted odds ratio [aOR], 0.84; 95% CI, 0.75-0.96) or as non-Hispanic (Hispanic vs non-Hispanic aOR, 0.72; 95% CI, 0.60-0.87). Redirection of care discussion occurrence did not differ by maternal education level or insurance type. Conclusions and Relevance: For infants born extremely preterm, redirection of care discussions occurred less often for Black and Hispanic infants than for White and non-Hispanic infants. It is important to explore the possible reasons underlying these differences.

Integrated Early Childhood Development in Cambodia: Protocol of a Cluster Stepped-Wedge Trial.

OBJECTIVES: Limited evidence is available on mechanisms linking integrated, multisector interventions with early childhood development. The Integrated Early Childhood Development program aims to improve children's development by promoting targeted caregiving behaviors beginning prenatally through age 5 years, in partnership with the Royal Government of Cambodia. METHODS: This cluster stepped-wedge trial is being conducted in Cambodia among 3 cohorts, encompassing 339 villages and 1790 caregivers who are pregnant or caring for a child aged <5 years. The 12- to 15-month intervention is delivered to each cohort using a staggered stepped-wedge design. Among all cohorts, enrollment evaluations will be followed by 3 data collection waves. Targeted caregiving interventions are provided through community, group, and home-visiting platforms. Child development is measured using the Caregiver Reported Early Development Instrument and the Early Childhood Development Index 2030. The evaluation assesses mediation through targeted caregiving behaviors: responsive caregiving, nutrition, health and hygiene, and household stability and support; moderation by household wealth, caregiver education, and child birth weight; and sustainability after the intervention concludes. CONCLUSIONS: This protocol article describes the plans for a cluster randomized controlled trial to measure the impact of an integrated, multisector intervention on children's development. By partnering with the Royal Government of Cambodia and addressing intervention pathways and moderators, this trial will provide guidance for policies and programs to promote early childhood development using principles of implementation science and equity, including increased investment for vulnerable families.

Early-Life Outcomes in Relation to Social Determinants of Health for Children Born Extremely Preterm.

OBJECTIVE: To characterize the relationships between social determinants of health (SDOH) and outcomes for children born extremely preterm. STUDY DESIGN: This is a cohort study of infants born at 22-26 weeks of gestation in National Institute of Child Health and Human Development Neonatal Research Network centers (2006-2017) who survived to discharge. Infants were classified by 3 maternal SDOH: education, insurance, and race. Outcomes included postmenstrual age (PMA) at discharge, readmission, neurodevelopmental impairment (NDI), and death postdischarge. Regression analyses adjusted for center, perinatal characteristics, neonatal morbidity, ethnicity, and 2 SDOH (eg, group comparisons by education adjusted for insurance and race). RESULTS: Of 7438 children, 5442 (73%) had at least 1 risk-associated SDOH. PMA at discharge was older (adjusted mean difference 0.37 weeks, 95% CL 0.06, 0.68) and readmission more likely (aOR 1.27, 95% CL 1.12, 1.43) for infants whose mothers had public/no insurance vs private. Neither PMA at discharge nor readmission varied by education or race. NDI was twice as likely (aOR 2.36, 95% CL 1.86, 3.00) and death 5 times as likely (aOR 5.22, 95% CL 2.54, 10.73) for infants with 3 risk-associated SDOH compared with those with none. CONCLUSIONS: Children born to mothers with public/no insurance were older at discharge and more likely to be readmitted than those born to privately insured mothers. NDI and death postdischarge were more common among children exposed to multiple risk-associated SDOH at birth compared with those not exposed. Addressing disparities due to maternal education, insurance coverage, and systemic racism are potential intervention targets to improve outcomes for children born preterm.

Development of the Global Network for Women's and Children's Health Research's socioeconomic status index for use in the network's sites in low and lower middle-income countries.

BACKGROUND: Socioeconomic status (SES) is an important determinant of health globally and an important explanatory variable to assess causality in epidemiological research. The 10th Sustainable Development Goal is to reduce disparities in SES that impact health outcomes globally. It is easier to study SES in high-income countries because household income is representative of the SES. However, it is well recognized that income is poorly reported in low- and middle- income countries (LMIC) and is an unreliable indicator of SES. Therefore, there is a need for a robust index that will help to discriminate the SES of rural households in a pooled dataset from LMIC. METHODS: The study was nested in the population-based Maternal and Neonatal Health Registry of the Global Network for Women's and Children's Health Research which has 7 rural sites in 6 Asian, sub-Saharan African and Central American countries. Pregnant women enrolling in the Registry were asked questions about items such as housing conditions and household assets. The characteristics of the candidate items were evaluated using confirmatory factor analyses and item response theory analyses. Based on the results of these analyses, a final set of items were selected for the SES index. RESULTS: Using data from 49,536 households of pregnant women, we reduced the data collected to a 10-item index. The 10 items were feasible to administer, covered the SES continuum and had good internal reliability and validity. We developed a sum score-based Item Response Theory scoring algorithm which is easy to compute and is highly correlated with scores based on response patterns (r = 0.97), suggesting minimal loss of information with the simplified approach. Scores varied significantly by site (p < 0.001). African sites had lower mean SES scores than the Asian and Central American sites. The SES index demonstrated good internal consistency reliability (Cronbach's alpha = 0.81). Higher SES scores were significantly associated with formal education, more education, having received antenatal care, and facility delivery (p < 0.001). CONCLUSIONS: While measuring SES in LMIC is challenging, we have developed a Global Network Socioeconomic Status Index which may be useful for comparisons of SES within and between locations. Next steps include understanding how the index is associated with maternal, perinatal and neonatal mortality. Trial Registration NCT01073475 Socioeconomic status (SES) is an important determinant of health globally, and improving SES is important to reduce disparities in health outcomes. It is easier to study SES in high-income countries because it can be measured by income and what income is spent on, but this concept does not translate easily to low and middle income countries. We developed a questionnaire that includes 10 items to determine SES in low-resource settings that was added to an ongoing Maternal and Neonatal Health Registry that is funded by the National Institutes of Child Health and Human Development's Global Network. The Registry includes sites that collect outcomes of pregnancies in women and their babies in rural areas in 6 countries in South Asia, sub-Saharan Africa and Central America. The Registry is population based and tracks women from early in pregnancy to day 42 post-partum. The questionnaire is easy to administer and has good reliability and validity. Next steps include understanding how the index is associated with maternal, fetal and neonatal mortality.

A Psychometric Evaluation of the Motor-Behavioral Assessment Scale for Use as an Outcome Measure in Rett Syndrome Clinical Trials.

Rett syndrome (RTT) is a neurodevelopmental disorder that primarily affects females. Recent work indicates the potential for disease modifying therapies. However, there remains a need to develop outcome measures for use in clinical trials. Using data from a natural history study (n = 1,075), we examined the factor structure, internal consistency, and validity of the clinician-reported Motor Behavior Assessment scale (MBA). The analysis resulted in a five-factor model: (1) motor dysfunction, (2) functional skills, (3) social skills, (4) aberrant behavior, and (5) respiratory behaviors. Item Response Theory (IRT) analyses demonstrated that all items had acceptable discrimination. The revised MBA subscales showed a positive relationship with parent reported items, age, and a commonly used measure of clinical severity in RTT, and mutation type. Further work is needed to evaluate this measure longitudinally and to add items related to the RTT phenotype.

Home-Based Early Intervention and the Influence of Family Resources on Cognitive Development.

OBJECTIVE: To investigate whether early developmental intervention (EDI) can positively affect the trajectories of cognitive development among children from low-resource families. METHODS: Longitudinal analyses were conducted of data from 293 children in the Brain Research to Ameliorate Impaired Neurodevelopment Home-based Intervention Trial, a randomized controlled trial of a home-based EDI program, to examine trajectories of Bayley Scales of Infant Development-Second Edition Mental Development Index (MDI) scores from 12 to 36 months of age among young children from high- and low-resource families in 3 low- to middle-resource countries. RESULTS: A 3-way interaction among family resources, intervention group, and age was statistically significant after controlling for maternal, child, and birth characteristics (Wald χ(2)(1) = 9.41, P = .002). Among children of families with high resources, both the intervention and control groups had significant increases in MDI scores over time (P < .001 and P = .002, respectively), and 36-month MDI scores for these 2 groups did not differ significantly (P = .602). However, in families with low resources, the EDI group displayed greater improvement, resulting in significantly higher 36-month MDI scores than the control group (P < .001). In addition, the 36-month MDI scores for children in families with low resources receiving EDI did not differ significantly from children from high-resource families in either the EDI (P = .509) or control (P = .882) groups. CONCLUSIONS: A home-based EDI during the first 3 years of life can substantially decrease the developmental gap between children from families with lower versus higher resources, even among children in low- to middle-resource countries.

Cancer Survivors' Use of Fertility Preservation.

BACKGROUND: Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. METHODS: The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. RESULTS: One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (p < 0.001); however, costs for women significantly declined over time (p = 0.021). CONCLUSIONS: The study points to other areas for research in women's health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.

Cross-site evaluation of the Alliance to Reduce Disparities in Diabetes: clinical and patient-reported outcomes.

Alliance programs implemented multilevel, multicomponent programs inspired by the chronic care model and aimed at reducing health and health care disparities for program participants. A unique characteristic of the Alliance programs is that they did not use a fixed implementation strategy common to programs using the chronic care model but instead focused on strategies that met local community needs. Using data provided by the five programs involved in the Alliance, this evaluation shows that of the 1,827 participants for which baseline and follow-up data were available, the program participants experienced significant decreases in hemoglobin A1c and blood pressure compared with a comparison group. A significant time by study group interaction was observed for hemoglobin A1c as well. Over time, more program participants met quality indicators for hemoglobin A1c and blood pressure. Those participants who attended self-management classes and experienced more resources and support for self-management attained more benefit. In addition, program participants experienced more diabetes competence, increased quality of life, and improvements in diabetes self-care behaviors. The cost-effectiveness of programs ranged from $23,161 to $61,011 per quality-adjusted life year. In sum, the Alliance programs reduced disparities and health care disparities for program participants.

Early working memory as a racially and ethnically neutral measure of outcome in extremely preterm children at 18-22 months.

BACKGROUND: Difficulties with executive function have been found in preterm children, resulting in difficulties with learning and school performance. AIM: This study evaluated the relationship of early working memory as measured by object permanence items to the cognitive and language scores on the Bayley Scales-III in a cohort of children born extremely preterm. STUDY DESIGN: Logistic regression models were conducted to compare object permanence scores derived from the Bayley Scales-III by race/ethnicity and maternal education, controlling for medical covariates. SUBJECTS: Extremely preterm toddlers (526), who were part of a Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network's multi-center study, were evaluated at 18-22 months corrected age. OUTCOME MEASURES: Object permanence scores derived from the Bayley Developmental Scales were compared by race/ethnicity and maternal education, controlling for medical covariates. RESULTS: There were no significant differences in object permanence mastery and scores among the treatment groups after controlling for medical and social variables, including maternal education and race/ethnicity. Males and children with intraventricular hemorrhage, retinopathy of prematurity, and bronchopulmonary dysplasia were less likely to demonstrate object permanence mastery and had lower object permanence scores. Children who attained object permanence mastery had significantly higher Bayley Scales-III cognitive and language scores after controlling for medical and socio-economic factors. CONCLUSIONS: Our measure of object permanence is free of influence from race, ethnic and socio-economic factors. Adding this simple task to current clinical practice could help detect early executive function difficulties in young children.

A population-based case-control study of stillbirth: the relationship of significant life events to the racial disparity for African Americans.

Stillbirths (fetal deaths occurring at ≥20 weeks' gestation) are approximately equal in number to infant deaths in the United States and are twice as likely among non-Hispanic black births as among non-Hispanic white births. The causes of racial disparity in stillbirth remain poorly understood. A population-based case-control study conducted by the Stillbirth Collaborative Research Network in 5 US catchment areas from March 2006 to September 2008 identified characteristics associated with racial/ethnic disparity and interpersonal and environmental stressors, including a list of 13 significant life events (SLEs). The adjusted odds ratio for stillbirth among women reporting all 4 SLE factors (financial, emotional, traumatic, and partner-related) was 2.22 (95% confidence interval: 1.43, 3.46). This association was robust after additional control for the correlated variables of family income, marital status, and health insurance type. There was no interaction between race/ethnicity and other variables. Effective ameliorative interventions could have a substantial public health impact, since there is at least a 50% increased risk of stillbirth for the approximately 21% of all women and 32% of non-Hispanic black women who experience 3 or more SLE factors during the year prior to delivery.

Are outcomes of extremely preterm infants improving? Impact of Bayley assessment on outcomes.

OBJECTIVES: To compare 18- to 22-month cognitive scores and neurodevelopmental impairment (NDI) in 2 time periods using the National Institute of Child Health and Human Development's Neonatal Research Network assessment of extremely low birth weight infants with the Bayley Scales of Infant Development, Second Edition (Bayley II) in 2006-2007 (period 1) and using the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley III), with separate cognitive and language scores, in 2008-2011 (period 2). STUDY DESIGN: Scores were compared with bivariate analysis, and regression analyses were run to identify differences in NDI rates. RESULTS: Mean Bayley III cognitive scores were 11 points higher than mean Bayley II cognitive scores. The NDI rate was reduced by 70% (from 43% in period 1 to 13% in period 2; P < .0001). Multivariate analyses revealed that Bayley III contributed to a decreased risk of NDI by 5 definitions: cognitive score <70 and <85, cognitive or language score <70; cognitive or motor score <70, and cognitive, language, or motor score <70 (P < .001). CONCLUSION: Whether the Bayley III is overestimating cognitive performance or whether it is a more valid assessment of emerging cognitive skills than the Bayley II is uncertain. Because the Bayley III identifies significantly fewer children with disability, it is recommended that all extremely low birth weight infants be offered early intervention services at the time of discharge from the neonatal intensive care unit, and that Bayley scores be interpreted with caution.

Prevalence of suicidal thoughts and attempts among pregnant Pakistani women.

OBJECTIVE: to determine the prevalence of suicidal thoughts and attempts and to identify demographic variables and mental health correlates such as anxiety/depression and domestic violence among pregnant women in an urban community in Pakistan. DESIGN: cross-sectional data from a prospective cohort study are presented. SETTING: women enrolled in an antenatal care clinic and followed to delivery in an urban area of Pakistan. POPULATION: cohort of pregnant women in Pakistan. METHODS: a total of 1,369 pregnant women were enrolled and interviewed regarding various maternal characteristics and pregnancy outcomes, and were asked specific questions about suicidal thoughts and attempts and administered the Aga Khan University Anxiety Depression Scale at 20-26 weeks of gestation. MAIN OUTCOME MEASURES: suicidal thoughts and attempts, verbal, sexual or physical abuse. RESULTS: overall, 148 of the 1,369 (11%) women studied had considered suicide. Of these, 148 women, 67 (45%) had attempted suicide. In all, 18% of the women were classified as having depression/anxiety, almost half (48%) reported experiencing verbal abuse and 20% reported physical/sexual abuse. Women who had anxiety/depression or had experienced verbal or physical/sexual abuse were significantly more likely to have had suicidal thoughts and attempts. CONCLUSIONS: women at the greatest risk for having suicidal thoughts or a suicide attempt were those who were depressed/anxious and had experienced some form of domestic abuse. With the high prevalence of these conditions, attention should be given to the establishment of effective mental health treatment programs for pregnant women.

Validation of the Functional Status II questionnaire in the assessment of extremely-low-birthweight infants.

AIM: The increased survival of infants born at extremely low birthweight (ELBW) has been associated with significant morbidity, including higher rates of neurodevelopmental disability. However, formalized testing to evaluate these problems is both time-consuming and costly. The revised Functional Status questionnaire (FS-II) was designed to assess caregivers' perceptions of the functional status of children with chronic diseases. METHOD: We evaluated the reliability and validity of the FS-II for ELBWinfants at 18 to 22 months corrected age using data from the US Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network (NRN). Exploratory factor analyses were conducted using data from the network's first follow-up study of 1080 children born in 1993 to 1994 (508 males, 572 females [53%]), and results were confirmed using data from the next network follow-up of 4022 children born in 1995 to 2000 (1864 males, 2158 females [54%]). RESULTS: Results suggest that a two-factor solution comprising measures of general health and independence is most appropriate for ELBW infants. These factors differed from those found among chronically ill children, and new, more appropriate scales are presented for screening ELBWsurvivors. Both scales demonstrated good internal consistency: Cronbach's a=0.87 for general health and a=0.75 for independence. Construct validity of the scales was assessed by comparing mean scores on the scales according to scores on the Bayley Scales of Infant Development, second edition (BSID-II), and medical conditions. INTERPRETATION: As hypothesized, infants with greater functional impairments according to their BSID-II scores or medical conditions had lower scores on the general health and independence scales, supporting the validity of the scales.

Beneficiary knowledge of original Medicare and Medicare managed care.

BACKGROUND: Previous research on beneficiary knowledge of the Medicare program has shown that the beneficiary population is not well informed about Medicare. The Centers for Medicare & Medicaid Services (CMS) implemented the National Medicare Education Program in 1998 to educate Medicare beneficiaries about program benefits; choices, rights, responsibilities and protections, and health behaviors. OBJECTIVES: We sought to measure beneficiary knowledge of the Medicare program and to assess how knowledge varies by beneficiary subgroups and topic areas. RESEARCH DESIGN: We conducted psychometric analyses of survey data from Round 36 of the Medicare Current Beneficiary Survey to construct knowledge indices and estimated regression models with each knowledge index as the dependent variable, controlling for sociodemographic characteristics, self-reported health status, and insurance. SUBJECTS: The study sample included 2634 noninstitutionalized Medicare beneficiaries. MEASURES: There were 2 separate knowledge indices representing the 2 primary avenues for receiving Medicare benefits: Original Medicare and Medicare managed care. RESULTS: Beneficiaries ages 75 or older, nonwhite, with lower incomes, lower education levels, and public insurance had lower levels of knowledge on both indices. Enrollment in Medicare managed care was positively associated with knowledge about Medicare managed care but negatively associated with knowledge about Original Medicare. Areas of low program knowledge included coverage and benefits, enrollment/disenrollment, and plan choice. CONCLUSIONS: Our findings suggest the need to develop educational campaigns targeting vulnerable beneficiaries who have continued to demonstrate low levels of Medicare program knowledge.

Evaluating the effect of translation on Spanish speakers' ratings of Medicare.

This study examined the equivalence of the English and Spanish versions of the Medicare Consumer Assessment of Health Plans Study (CAHPS) fee-for-service (FFS) survey among 2,996 Hispanic Medicare beneficiaries. Multigroup confirmatory factor analyses indicated that with few exceptions the factor structures were very similar for the English and Spanish surveys. However, item response theory-based methods for investigating differential item functioning (DIF) revealed that several items demonstrated threshold-related DIF, suggesting that respondents in the two languages utilized the response options for the items differently. The results of this study suggest the need for future qualitative research to understand how respondents comprehend the response options in the two languages.

Insurance knowledge and decision-making practices among Medicare beneficiaries and their caregivers.

BACKGROUND: The complexity of health plans and the Medicare program may require some beneficiaries to seek help when making health insurance decisions. However, there has been little research examining the Medicare-related knowledge and information gathering of beneficiaries who receive decision-making help and those who assist them. OBJECTIVES: We sought to compare the Medicare knowledge and information-gathering of beneficiaries who receive help with insurance decisions or their proxy respondents with beneficiaries who make their own decisions. RESEARCH DESIGN: Data were drawn from the 2000 Medicare Current Beneficiary Survey (MCBS), which includes a nationally representative sample of noninstitutionalized Medicare beneficiaries. SUBJECTS: We included a total of 11,978 beneficiaries and 1401 proxies who completed the MCBS. MEASURES: Measures were items and indices from the MCBS measuring the Medicare education campaign goals of access, awareness, and use of information sources, understanding of Medicare, and confidence in decision-making. RESULTS: Beneficiaries who receive help with health insurance decisions have lower knowledge of the Medicare program and are less likely to be aware of and use information sources than beneficiaries who make their own decisions. With few exceptions, proxy respondents had similar levels of access and knowledge as beneficiaries who make their own insurance decisions. CONCLUSIONS: Beneficiaries who receive help with their insurance decisions may be a particularly vulnerable population. They may have limited Medicare knowledge and not be aware of the resources that could help them.

Measuring beneficiary knowledge of the Medicare program: a psychometric analysis.

Reliable measures of Medicare beneficiaries' program knowledge are necessary for credible program monitoring, evaluation, and public accountability. This study developed and evaluated the psychometric properties of two possible measures of beneficiary knowledge. One measure was based on self-reported knowledge, the other was a true/false quiz which requires beneficiaries to demonstrate their knowledge. We used data from the 1998 and 1999 Medicare Current Beneficiary Survey (MCBS) to evaluate the reliability and construct validity of the indices. Overall, based on both content considerations and the psychometric analyses, the true/false quiz proved to be the more accurate and useful measure of beneficiaries' knowledge.