Standardizing Electronic Health Record Data on AD/ADRD to Accelerate Health Equity in Prevention, Detection, and Treatment.

Improving the prevention, detection, and treatment of Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) across racial, ethnic, and other diverse populations is a national priority. To this end, this paper proposes the development of the Standard Health Record for Dementia (SHRD, pronounced "shared") for collecting and sharing AD/ADRD real-world data (RWD). SHRD would replace the current unstandardized, fragmented, or missing state of key RWD with an open source, consensus-based, and interoperable common data standard. This paper describes how SHRD could leverage the best practices of the Minimal Common Oncology Data Elements (mCODETM) initiative to advance prevention, detection, and treatment; gain adoption by clinicians and electronic health record (EHR) vendors; and establish sustainable business and governance models. It describes a range of potential use cases to advance equity, including strengthening public health surveillance by facilitating AD/ADRD registry reporting; improving case detection and staging; and diversifying participation in clinical trials.

The effect of operations research on program changes in Bangladesh.

This article is based on the ten-year experience of an operations research project in Bangladesh. It assesses how, and under what circumstances, research-based advice and results of pilot projects contribute to change in large-scale public programs. It discusses project research on issues facing the national family planning program: recruitment and training of field-workers; delivery of injectable contraceptives; management information; field-workers' use of service registers; field supervision; satellite clinics; and contraceptive user fees. These issues are used to illustrate the advantages and disadvantages of a long-term institutionalized project, and to describe the diversity of means for communication with policymakers. The analysis shows that research, policy decision, and implementation can occur in any sequence. Policy advice that disrupts long-standing power relationships and organizational culture takes a great deal of effort to implement. Operations research can produce useful changes in organizational behavior, even when large-scale problems remain.

How are older maternal age and grand multiparity related to infant health?

PIP: Most of the studies that have shown excess risks of morbidity and mortality for infants born to older mothers or those at very high parity have used data from countries with low infant mortality rates, mainly in Europe and North America. In these countries, increasing numbers of women are delaying childbearing into their thirties and early forties, making the consequences of older maternal age for the infant an important public health concern. Grand multiparity, by contrast, is now exceedingly rare in those countries. In many developing countries, however, childbearing typically continues, even if it does not start, at older maternal ages, and grand multiparity is not at all uncommon, It is thus important for the design and targeting of maternal and child health and family planning programs to distinguish the effects of infant health of high parity from those of older maternal age, and of maternal age as such from those of primiparity at older ages. This review uses data from countries that now have low fertility and infant mortality rates as well as from countries where both rates are higher to assess the evidence for different mechanisms through which maternal age and parity affect infant health.^ieng

How are young maternal age and primiparity related to infant health?

PIP: This article is an abridgement of a background paper for the Working Group on the Health Consequences of Contraceptive Use and Controlled Fertility of the US National Academy of Sciences Committee on Population. The possible biomedical mechanisms connecting young maternal age and primarity with infant mortality are reviewed. Most of the data concerning causes of death comes from small clinical studies or special purpose population studies. Low birth weight is associated with a higher risk of mortality, morbidity, and developmental problems in infants. Infants born to young mothers in the US are at risk of low birth weight, prematurity, and perinatal death. In 5 Latin American sites, infants born to mothers who were less than 20 years old were between 1.3 and 1.9 times as likely to die as newborn infants as were those born to mothers 20 to 24 years old. The risk was about as large for postneonatal deaths, too. Primiparity and young maternal age could be associated with low birth weight and infant deaths for many reasons. These include: 1) mother-fetus competition for macronutrients; 2) micronutrient deficiencies; 3) infections; 4) pregnancy-induced hypertension; 5) malaria; and 6) delivery complications. The mechanisms that most affect infant health and for which there is the strongest evidence are pregnancy-induced hypertension, intrauterine growth retardation, and placental malaria. There appears to be a connection between age and primiparity.^ieng

How is birthspacing related to infant health?

PIP: Varied risk factors, such as limited access to medical care, parity, and maternal undernutrition, contribute to the poor pregnancy outcomes observed in short birth intervals, especially in developing countries. Yet research shows that these factors combined with short birth intervals do not necessarily cause poor pregnancy outcomes. Regardless, family planning programs do inform the population of the risk factors and will eventually cause subsequent declines in infant mortality rates (IMRs) and improvements in infant health. Some research suggests that a specific mechanism, which has not yet been identified, interferes with the uteroplacental circulatory system in early pregnancy which causes fetal growth retardation when pregnancy intervals are short. Moreover, World Fertility Survey studies indicate that short intervals are associated with excess risks that continue beyond early pregnancy. Yet these same risks, such as respiratory and immunologic difficulties, also occur in premature infants and low birth weight infants. In addition, many young siblings present in the home (often evidence of short interbirth intervals) increases exposure of infants to both measles and gastrointestinal diseases. Further research should include collecting data on birthweights, gestational age, and causes of death in association with pregnancy interval data, ideally entire reproductive histories. A case control study, matching each short-interval death and comparing proximate causes, age at death, and risk factors, makes for a useful study design. This type of study must occur in a country where demographic surveillance systems exist or where a very large proportion of births occurs in hospitals or at home with trained attendants.^ieng

Reliability of retrospective survey data on infant feeding.

This article examines retest reliability and digit preference in retrospective survey data on breastfeeding duration and type of supplementary food, covering three decades and reported by more than 1200 Malaysian women. Women with little or no education, rural residents, and those of Malay ethnicity are found to give less reliable data. In a logistic regression analysis, these respondent characteristics are more important determinants of data quality than the length of the recall period.

Evidence of a reversal of the breastfeeding decline in Peninsular Malaysia.

Data from the Malaysian Family Life Survey show an increase in the percentage of infants breastfed, at least initially, from 75 per cent in 1970-74 to 79 per cent in 1975-77. Contrary to what would be expected if Malaysia were following the trends observed in the United States and Western Europe, the increase has occurred among poor and uneducated women as well as among the more fortunate. The increase was especially marked for infants born in hospitals and private clinics, which had very low rates of breastfeeding in the early 1970s. The change may be due partly to a shift in the practices and recommendations of health professionals. Trends in infant feeding practices in Malaysia during the whole period 1950-77 are reviewed. Reasons for thinking the increase in the mid-1970s an artifact of the survey are presented and provisionally rejected. The implications of these findings for child health policy in Malaysia and for theories of infant feeding trends in developing countries are discussed.

Negative bias in estimates of the correlation between children's weight-for-height and height-for-age.

Several analyses of cross-sectional anthropometric survey data have found weak correlations between children's weight-for-height and height-for-age. Random non-sampling error in height measurement can produce a significant negative bias in estimates of their correlation. The size of this bias is quantified here using Monte Carlo simulation techniques. Even when two-thirds of height measurements are within two centimeters of their true value, the median estimate of the correlation is .095 below its true value for the sample. There may be differences in the etiology of protein energy malnutrition, as represented by stunting (low height-for-age) and wasting (low weight-for-height), but inferences based on cross-sectional data alone may be misleading, unless random measurement error is negligeable.

Health consequences of infant feeding in Malaysia: a review.

PIP: This article reviews studies, of both Malaysian and other populations, on infant feeding patterns and their effect on health and survival prospects of children. The consequences of infant feeding patterns can be grouped into the 2 main categories of nutritional and immunological. Breast milk alone, even from a very poorly nourished woman, is usually adequate nutritionaly for infants for some period after birth. Human milk contains lactoferrin and transferrin proteins which bind iron in the infant's gut, thus depriving certain bacteria of this nutrient and inhibiting their multiplication. Colostrum, the "pre-milk" produced by women in the 1st few days postpartum before mature milk comes in, is particularly rich in secretory IgA. 1 study, (Butz et al, 1982) with multivariate analysis, found that the risk of mortality was lowered the longer an infant was breastfed. Mortality influences of breastfeeding and environmental hygeine interact, with relative risk of early weaning being much greater in households lacking flush totoilets, piped water or both, than in households with these amenities. Although an unreliable means of avoiding pregnancy, breastfeeding is one of th major traditional means of birth spacing and population control. In an environment where an infant is protected by caretakers who will respond to signs for illness, and who are assured of an adequate supply of nutrients, feeding patterns are nearly indistinguishable in their effects in survival prospects. Within this type of environment, parents can freely make feeding decisions based on custom, advice, or convenience. Inappropriate feeding may not harm infants significantly if clean water is available, family hygeine is adequate, and if preventive and curative care for infectious diseases is widely available.^ieng