Life in Data Sets: Locating and Accessing Data on the Health of Americans Across the Life Span.

CONTEXT: The US government manages a large number of data sets, including federally funded data collection activities that examine infectious and chronic conditions, as well as risk and protective factors for adverse health outcomes. Although there currently is no mature, comprehensive metadata repository of existing data sets, US federal agencies are working to develop and make metadata repositories available that will improve discoverability. However, because these repositories are not yet operating at full capacity, researchers must rely on their own knowledge of the field to identify available data sets. PROGRAM OR POLICY: We sought to identify and consolidate a practical and annotated listing of those data sets. IMPLEMENTATION AND/OR DISSEMINATION: Creative use of data resources to address novel questions is an important research skill in a wide range of fields including public health. This report identifies, promotes, and encourages the use of a range of data sources for health, behavior, economic, and policy research efforts across the life span. EVALUATION: We identified and organized 28 federal data sets by the age-group of primary focus; not all groups are mutually exclusive. These data sets collectively represent a rich source of information that can be used to conduct descriptive epidemiologic studies. DISCUSSION: The data sets identified in this article are not intended to represent an exhaustive list of all available data sets. Rather, we present an introduction/overview of the current federal data collection landscape and some of its largest and most frequently utilized data sets.

Prevalence of dementia subtypes in United States Medicare fee-for-service beneficiaries, 2011-2013.

INTRODUCTION: Rapid growth of the older adult population requires greater epidemiologic characterization of dementia. We developed national prevalence estimates of diagnosed dementia and subtypes in the highest risk United States (US) population. METHODS: We analyzed Centers for Medicare & Medicaid administrative enrollment and claims data for 100% of Medicare fee-for-service beneficiaries enrolled during 2011-2013 and age ≥68 years as of December 31, 2013 (n = 21.6 million). RESULTS: Over 3.1 million (14.4%) beneficiaries had a claim for a service and/or treatment for any dementia subtype. Dementia not otherwise specified was the most common diagnosis (present in 92.9%). The most common subtype was Alzheimer's (43.5%), followed by vascular (14.5%), Lewy body (5.4%), frontotemporal (1.0%), and alcohol induced (0.7%). The prevalence of other types of diagnosed dementia was 0.2%. DISCUSSION: This study is the first to document concurrent prevalence of primary dementia subtypes among this US population. The findings can assist in prioritizing dementia research, clinical services, and caregiving resources.

What is "community health"? Examining the meaning of an evolving field in public health.

In this commentary, we review definition frameworks for community health and examine factors having core relevance to shaping the meaning of this term and growing field. We conclude by suggesting a potential framework for conceptualizing and advancing this field of public health practice through improved understanding of the meaning, scope, and science of community health.

Co-occurrence of leading lifestyle-related chronic conditions among adults in the United States, 2002-2009.

INTRODUCTION: Public health and clinical strategies for meeting the emerging challenges of multiple chronic conditions must address the high prevalence of lifestyle-related causes. Our objective was to assess prevalence and trends in the chronic conditions that are leading causes of disease and death among adults in the United States that are amenable to preventive lifestyle interventions. METHODS: We used self-reported data from 196,240 adults aged 25 years or older who participated in the National Health Interview Surveys from 2002 to 2009. We included data on cardiovascular disease (coronary heart disease, angina pectoris, heart attack, and stroke), cancer, chronic obstructive pulmonary disease (emphysema and chronic bronchitis), diabetes, and arthritis. RESULTS: In 2002, an unadjusted 63.6% of participants did not have any of the 5 chronic conditions we assessed; 23.9% had 1, 9.0% had 2, 2.9% had 3, and 0.7% had 4 or 5. By 2009, the distribution of co-occurrence of the 5 chronic conditions had shifted subtly but significantly. From 2002 to 2009, the age-adjusted percentage with 2 or more chronic conditions increased from 12.7% to 14.7% (P < .001), and the number of adults with 2 or more conditions increased from approximately 23.4 million to 30.9 million. CONCLUSION: The prevalence of having 1 or more or 2 or more of the leading lifestyle-related chronic conditions increased steadily from 2002 to 2009. If these increases continue, particularly among younger adults, managing patients with multiple chronic conditions in the aging population will continue to challenge public health and clinical practice.

Defining and measuring chronic conditions: imperatives for research, policy, program, and practice.

Current trends in US population growth, age distribution, and disease dynamics foretell rises in the prevalence of chronic diseases and other chronic conditions. These trends include the rapidly growing population of older adults, the increasing life expectancy associated with advances in public health and clinical medicine, the persistently high prevalence of some risk factors, and the emerging high prevalence of multiple chronic conditions. Although preventing and mitigating the effect of chronic conditions requires sufficient measurement capacities, such measurement has been constrained by lack of consistency in definitions and diagnostic classification schemes and by heterogeneity in data systems and methods of data collection. We outline a conceptual model for improving understanding of and standardizing approaches to defining, identifying, and using information about chronic conditions in the United States. We illustrate this model's operation by applying a standard classification scheme for chronic conditions to 5 national-level data systems. Although the literature does not support a single uniform definition for chronic disease, recurrent themes include the non-self-limited nature, the association with persistent and recurring health problems, and a duration measured in months and years, not days and weeks--Thrall. So far, many different approaches have been used to measure the prevalence and consequences of chronic diseases and health conditions in children, resulting in a wide variability of prevalence estimates that cannot be readily compared--van der Lee et al.

Trends and factors associated with the Day 5 embryo transfer, assisted reproductive technology surveillance, USA, 2001-2009.

STUDY QUESTION: What characteristics are associated with a Day 5 embryo transfer? SUMMARY ANSWER: The use of the Day 5 embryo transfer has increased over time, with clinicians allowing women with typically 'poorer' prognostic characteristics to undergo a Day 5 embryo transfer. The mean number of embryos per Day 5 transfer decreased from 2001 to 2009, although the prevalence of the Day 5 single embryo transfer remains low and the rate of multiple births remains substantial. WHAT IS KNOWN AND WHAT THIS PAPER ADDS: Day 5 embryo transfer may reduce the rate of multiple gestation pregnancy. US trends over time in the prevalence of the Day 5 transfer, changes in characteristics of patients receiving Day 5 transfer, and number of embryos transferred are unknown. DESIGN: We used 2001-2009 US National assisted reproductive technology (ART) Surveillance System (NASS) data on 620,295 fresh IVF cycles derived from autologous oocytes with a Day 3 or 5 embryo transfer. Trends in the mean number of embryos transferred from 2001 to 2009 were assessed by the day of transfer. For 349,947 cycles from clinics performing both Days 3 and 5 embryo transfers, multivariable logistic regression was used to determine the characteristics associated with the Day 5 embryo transfer. We also compared the characteristics of the Day 5 embryo cycles in 2001 and 2009. MAIN RESULTS AND THE ROLE OF CHANCE: Overall, the proportion of ART cycles using the Day 5 embryo transfer increased from 12% in 2001 to 36% in 2009 (P<0.0001), while the mean number of embryos transferred decreased from 2.4 to 2.1 (P<0.0001). Among Day 5 transfers, the rate of the single embryo transfer tripled from 4.5% in 2001 to 14.8% in 2009 (P<0.0001); and the rate of multiple births decreased from 44.8 to 41.1% (P<0.0001). In cycles initiated after 2001, maternal age<35 years, no prior ART cycles, ≥1 prior pregnancies, baseline follicle stimulating hormone<10 international units and ≥10 oocytes retrieved were associated with the Day 5 embryo transfer. Compared with 2001, in 2009, a broader range of candidates received the Day 5 transfer. BIAS Women undergoing multiple ART cycles over time are not linked. CONFOUNDING FACTORS AND OTHER REASONS FOR CAUTION: We ran multivariable logistic regression to lessen the effects of the confounding factors. Cycle cancelation rates by the day of embryo transfer are unknown. GENERALIZABILITY TO OTHER POPULATIONS: Generalizable to ART clinics included in NASS. STUDY FUNDING/COMPETING INTERESTS: This study was funded by the Centres for Disease Control. The authors have no competing interests to declare.

Integrating the life course perspective into a local maternal and child health program.

For many decades, early access to prenatal care has been considered the gold standard for improving birth outcomes. In Contra Costa County, a diverse urban and suburban county of over one million people in the San Francisco Bay Area, the Family Maternal and Child Health Programs of Contra Costa Health Services (CCHS) have seen high rates of early entry into prenatal care since 2000. Yet despite our best efforts to increase access to quality prenatal care, our rates of low birth weight and infant mortality, especially among African Americans, continue to be high. When we were introduced to the Life Course Perspective in 2003 as an organizational framework for our programmatic activities, we recognized that emerging scientific evidence in the literature demonstrated the importance of social and environmental factors in determining health and health equity, and supported a general impression in the field that prenatal care was not enough to improve birth outcomes. The Life Course Perspective suggests that many of the risk and protective factors that influence health and wellbeing across the lifespan also play an important role in birth outcomes and in health and quality of life beyond the initial years. In this article, we describe the Life Course Perspective and how one local Maternal and Child Health Program adopted and adapted this paradigm by creating and launching a Life Course Initiative to guide our programs and services. The Life Course Initiative implemented by CCHS is designed to reduce inequities in birth outcomes, improve reproductive potential, and change the health of future generations by introducing a longitudinal, integrated, and ecological approach to implementing maternal and child health programs.

Clinical indications and determinants of the rise of cesarean section in three hospitals in rural China.

This study investigated changes in cesarean delivery rate and cesarean indications in 3 county-level hospitals in rural China. Hospital delivery records in 1997 and 2003 were used to examine the reasons behind the changes. In Chengde County Hospital, the cesarean delivery rate increased from 28% in 1997 to 54% in 2003. The rate increased from 43% in 1997 to 65% in 2003 in Anxian County Hospital and Anxian Maternal and Child Health Hospital. The dramatic increase in cesarean delivery in the study hospitals was associated with a shift from more severe to mild or no clinical indications. The ratio of mild to moderate to severe hypertension increased substantially. More than half of the cephalopelvic disproportion cases were diagnosed prior to labor. The majority of nuchal cord cases were diagnosed without fetal distress. Maternal/family request was the number one cesarean indication in Anxian County Hospital and Anxian MCH Hospital in 2003. Ultrasound evidence of nuchal cord moved from the ninth ranked indication in 1997 to the second in 2003 in Chengde County Hospital.

Complications of common gynecologic surgeries among HIV-infected women in the United States.

OBJECTIVE: To compare frequencies of complications among HIV-infected and-uninfected women undergoing common gynecological surgical procedures in inpatient settings. METHODS: We used 1994-2007 data from the Nationwide Inpatient Sample of the Healthcare Cost and Utilization Project, a nationally representative sample of inpatient hospitalizations. Our analysis included discharge records of women aged ≥15 undergoing hysterectomy, oophorectomy, salpingectomy for ectopic pregnancy, bilateral tubal sterilization, or dilation and curettage. Associations between HIV infection status and surgical complications were evaluated in multivariable logistic regression models, adjusting for key covariates. RESULTS: For each surgery, HIV infection was associated with experiencing ≥1 complication. Adjusted ORs ranged from 2.0 (95% confidence interval (CI): 1.7, 2.2) for hysterectomy with oophorectomy to 3.1 (95% CI: 2.4, 4.0) for bilateral tubal sterilization with no comorbidity present. HIV infection was positively associated with extended length of stay and infectious complications of all of the surgeries examined. For some surgeries, it was positively associated with transfusion and anemia due to acute blood loss. Among HIV-infected women, the odds of infectious and other complications did not decrease between 1994-2000 and 2001-2007. CONCLUSION: HIV infection was associated with elevated frequencies of complications of gynecologic surgeries in the US, even in the era of HAART.

Poisoning hospitalisations among reproductive-aged women in the USA, 1998-2006.

OBJECTIVE: To describe poisoning hospitalisations among reproductive-aged women from 1998 to 2006. METHODS: 1998-2006 data from the Nationwide Inpatient Sample of the Healthcare Cost and Utilisation Project were used to identify hospitalisations for poisonings among US women aged 15-44 years. Differences in hospitalisation characteristics were compared by intent using χ(2) statistics. Trends in poisoning hospitalisation rates were calculated overall and by subgroup. RESULTS: There were approximately 636,000 poisoning hospitalisations in women aged 15-44 years during 1998-2006. Hospitalisations for intentionally self-inflicted poisonings had a higher proportion of women aged 15-24 years and privately insured women than did unintentional poisonings (p<0.001). Poisoning hospitalisations in rural areas and those that resulted in death were more likely to be of undetermined intent than those for which intent was specified (p<0.001). Co-diagnoses of substance abuse (34.5%) or mental disorders (66.5%) were high. The rate of poisoning hospitalisations overall and unintentional poisoning hospitalisations increased 6% and 22%, respectively, during this period (p<0.001). The most frequently diagnosed poisoning agent was acetaminophen. Poisonings attributable to acetaminophen, opioids, central nervous system stimulants and benzodiazepines increased, while poisonings attributable to antidepressants decreased (p<0.05). CONCLUSIONS: The increase in unintentional poisoning hospitalisations among women aged 15-44 years and the changing profile of poisoning agents should inform the healthcare community's poisoning prevention strategies. Poisoning prevention strategies should include a component to address substance abuse and mental health disorders among reproductive-age women.

Route of delivery and neonatal birth trauma.

OBJECTIVE: We sought to examine rates of birth trauma in 2 groupings (all International Classification of Diseases, Ninth Revision codes for birth trauma, and as defined by the Agency for Healthcare Research and Quality Patient Safety Indicator [PSI]) among infants born by vaginal and cesarean delivery. STUDY DESIGN: Data on singleton infants were obtained from the 2004-2005 Healthcare Cost and Utilization Project Nationwide Inpatient Sample. RESULTS: The rates of Agency for Healthcare Research and Quality PSI and all birth trauma were 2.45 and 25.85 per 1000 births, respectively. Compared with vaginal, cesarean delivery was associated with increased odds of PSI birth trauma (odds ratio [OR], 1.71), primarily due to an increased risk for "other specified birth trauma" (OR, 2.61). Conversely, cesarean delivery was associated with decreased odds of all birth trauma (OR, 0.55), due to decreased odds of clavicle fractures (OR, 0.07), brachial plexus (OR, 0.10), and scalp injuries (OR, 0.55). CONCLUSION: Infants delivered by cesarean are at risk for different types of birth trauma from infants delivered vaginally.

Severe obstetric morbidity in the United States: 1998-2005.

OBJECTIVE: To examine trends in the rates of severe obstetric complications and the potential contribution of changes in delivery mode and maternal characteristics to these trends. METHODS: We performed a cross-sectional study of severe obstetric complications identified from the 1998-2005 Nationwide Inpatient Sample of the Healthcare Cost and Utilization Project. Logistic regression was used to examine the effect of changes in delivery mode and maternal characteristics on rates of severe obstetric complications. RESULTS: The prevalence of delivery hospitalizations (per 1,000) complicated by at least one severe obstetric complication increased from 0.64% (n=48,645) in 1998-1999 to 0.81% (n=68,433) in 2004-2005. Rates of complications that increased significantly during the study period included renal failure by 21% (from 0.23 to 0.28), pulmonary embolism by 52% (0.12 to 0.18), adult respiratory distress syndrome by 26% (0.36 to 0.45), shock by 24% (0.15 to 0.19), blood transfusion by 92% (2.38 to 4.58), and ventilation by 21 % (0.47 to 0.57). In logistic regression models, adjustment for maternal age had no effect on the increased risk for these complications in 2004-2005 relative to 1998-1999. However, after adjustment for mode of delivery, the increased risks for these complications in 2004-2005 relative to 1998-1999 were no longer significant, with the exception of pulmonary embolism (odds ratio 1.30) and blood transfusion (odds ratio 1.72). Further adjustment for payer, multiple births, and select comorbidities had little effect. CONCLUSION: Rates of severe obstetric complications increased from 1998-1999 to 2004-2005. For many of these complications, these increases were associated with the increasing rate of cesarean delivery. LEVEL OF EVIDENCE: III.

Trends in hospitalizations with psychiatric diagnoses among HIV-infected women in the USA, 1994-2004.

Psychiatric illnesses commonly co-occur with HIV infection and such illnesses have been linked to women's poorer medication adherence and suicide. Using hospital discharge data from the 1994-2004 Nationwide Inpatient Sample, we conducted this study to describe hospitalizations with psychiatric diagnoses from 1994 through 2004 and evaluate the association of specific psychiatric disorders among hospitalized HIV-infected women in the USA with their lack of adherence to medical treatment and suicide attempt. Multivariable logistic regression analyses were used to examine trends in hospitalizations with psychiatric diagnoses among nonpregnant HIV-infected women and the association between specific disorders and women's lack of adherence to medical treatment and suicide attempt. Between 1994 and 2004, the estimated number of all hospitalizations among nonpregnant HIV-infected women increased by 8%, while the number of hospitalizations with a psychiatric diagnosis in this population increased by 73%. After adjusting for demographic factors and alcohol/substance abuse, we found that HIV-infected women were more likely to be hospitalized for mood (odds ratio (OR): 2.35; 95% confidence interval (CI): 1.93-2.88), anxiety (OR: 2.24, 95%CI: 1.74-2.88), and psychotic (OR: 1.45, 95%CI: 1.10-1.90) disorders in 2004 than in 1994. There was a significant association of alcohol/substance abuse with mood, adjustment, anxiety, personality, and psychotic disorders. Noncompliance with medical treatment was significantly associated with psychotic disorders, whereas suicide attempt/self-inflicted injury was significantly associated with mood, adjustment, anxiety, personality, and psychotic disorders. The number of hospitalizations with a psychiatric diagnosis among HIV-infected women in the USA has increased substantially. As HIV-infected women live longer, these results highlight the need for targeted public health interventions to address mental health issues in this population.

Estimates of intraclass correlation for variables related to behavioral HIV/STD prevention in a predominantly African American and Hispanic sample of young women.

Studies designed to evaluate HIV and STD prevention interventions often involve random assignment of groups such as neighborhoods or communities to study conditions (e.g., to intervention or control). Investigators who design group-randomized trials (GRTs) must take the expected intraclass correlation coefficient (ICC) into account in sample size estimation to have adequate power; however, few published ICC estimates exist for outcome variables related to HIV and STD prevention. The Prevention Options for Women Equal Rights (POWER) study was a GRT designed to evaluate a campaign to increase awareness and use of condoms among young African American and Hispanic women. The authors used precampaign and postcampaign data from the POWER study to estimate ICCs (unadjusted and adjusted for covariates) for a variety of sexual behavior and other variables. To illustrate the impact of ICCs on power, the authors present sample-size calculations and demonstrate how ICCs of differing magnitude will affect estimates of required sample size.

Overcoming social and health inequalities among U.S. women of reproductive age - challenges to the nation's health in the 21st century.

OBJECTIVE: To frame the discussion of the nation's health within the context of maternal and child health. METHODS: We used national data or estimates to assess the burden of 46 determinants. RESULTS: During 2002-2004, U.S. women of reproductive age experienced significant challenges from macrosocial determinants, to health care access, and to their individual health preservation. Two-thirds of women do not consume recommended levels of fruits and vegetables. Overall, 29% experienced income poverty, 16.3% were uninsured. About one in four women of reproductive age lived with poor social capital. Compared with white women of reproductive age, non-white women reported higher levels of dissatisfaction with the health care system and race-related discrimination. Among all U.S. women, chronic diseases contributed to the top nine leading causes of disability adjusted life years. About one-third of women had no prophylactic dental visits in the past year, or consumed alcohol at harmful levels and smoked tobacco. One in three women who had a child born recently did not breast feed their babies. Demographics of women who are at increased risk for the above indicators predominate among the socioeconomically disadvantaged. CONCLUSIONS: At least three-fourths of the U.S. women of reproductive age were at risk for poor health of their own and their offspring. Social intermediation and health policy changes are needed to increase the benefits of available health and social sector interventions to women and thereby to their offspring.

Hospitalizations with amphetamine abuse among pregnant women.

OBJECTIVE: To examine trends in pregnancy hospitalizations with a diagnosis of amphetamine or cocaine abuse and the prevalence of associated medical complications. METHODS: Data were obtained from the Nationwide Inpatient Sample. Hospitalization ratios per 100 deliveries for amphetamine or cocaine abuse from 1998 to 2004 were tested for linear trends. Amphetamine-abuse hospitalizations were compared with cocaine-abuse hospitalizations and non-substance-abuse hospitalizations. A chi2 analysis was used to compare hospitalization characteristics. Conditional probabilities estimated by logistic regression were used to calculate adjusted prevalence ratios for each medical diagnosis of interest. RESULTS: From 1998 to 2004, the hospitalization ratio for cocaine abuse decreased 44%, whereas the hospitalization ratio for amphetamine abuse doubled. Pregnancy hospitalizations with a diagnosis of amphetamine abuse were geographically concentrated in the West (82%), and were more likely to be among women younger than 24 years than the cocaine-abuse or non-substance-abuse hospitalizations. Most medical conditions were more prevalent in the amphetamine-abuse group than the non-substance-abuse group. When the substance abuse groups were compared with each other, obstetric diagnoses associated with infant morbidity such as premature delivery and poor fetal growth were more common in the cocaine-abuse group, whereas vasoconstrictive effects such as cardiovascular disorders and hypertension complicating pregnancy were more common in the amphetamine-abuse group. CONCLUSION: As pregnancy hospitalizations with a diagnosis of amphetamine abuse continue to increase, clinicians should familiarize themselves with the adverse consequences of amphetamine abuse during pregnancy and evidence-based guidelines to deal with this high-risk population. LEVEL OF EVIDENCE: III.

Where are the data to drive policy changes for preconception health and health care?

Improving preconception health is recognized as being crucial to improving reproductive health outcomes for women and infants. At the same time, there is increasing pressure on public health and clinical medicine programs to have evidence that documents positive health impact for continued support for program implementation and policy change. In the field of preconception health and health care, there is a growing body of evidence to support the implementation of public health programs and clinical practice. One current challenge is the unavailability of a comprehensive surveillance system providing data to demonstrate the need for such programs and to monitor the impact of programs and services. There is no single source of data or evidence for policy and financing support for preconception care; however, there are a number of related data resources that can be used to inform and support such programs. We describe national and state-level data sources from which data relevant to preconception health and health care can be extracted as well as steps that can be taken to improve the quantity and quality of preconception health data.