Very Preterm Infants with Technological Dependence at Home: Impact on Resource Use and Family.

OBJECTIVE: To examine the impact of medical complexity among very preterm infants on health care resource use, family, and neurodevelopmental outcomes at 18 months' corrected age. METHODS: This observational cohort study of Canadian infants born < 29 weeks' gestational age in 2009-2011 compared infants with and those without medical complexity defined as discharged home with assistive medical technology. Health care resource use and family outcomes were collected. Children were assessed for cerebral palsy, deafness, blindness, and developmental delay at 18 months. Logistic regression analysis was performed for group comparisons. RESULTS: Overall, 466/2,337 infants (20%) needed assistive medical technology at home including oxygen (79%), gavage feeding (21%), gastrostomy or ileostomy (20%), CPAP (5%), and tracheostomy (3%). Children with medical complexity were more likely to be re-hospitalized (OR 3.6, 95% CI 3.0-4.5) and to require ≥2 outpatient services (OR 4.4, 95% CI 3.5-5.6). Employment of both parents at 18 months was also less frequent in those with medical complexity compared to those without medical complexity (52 vs. 60%, p < 0.01). Thirty percent of children with medical complexity had significant neurodevelopmental impairment compared to 13% of those without medical complexity (p < 0.01). Lower gestational age, lower birth weight, bronchopulmonary dysplasia, sepsis, and surgical necrotizing enterocolitis were associated with a risk of medical complexity. CONCLUSION: Medical complexity is common following very preterm birth and has a significant impact on health care use as well as family employment and is more often associated with neurodevelopmental disabilities. Efforts should be deployed to facilitate care coordination upon hospital discharge and to support families of preterm children with medical complexity.

From Nonissue to Healthcare Crisis: A Historical Review of Aging and Dying With an Intellectual and Developmental Disability.

Individuals with intellectual and developmental disabilities are living unprecedentedly longer lives primarily due to the long-term benefits of the deinstitutionalization movement and widespread improvements in health outcomes. However, the consequences of this protracted aging process are significant, complex, and often poor not only for the individuals and their caregivers but for the mainstream healthcare community. This article will explore, utilizing a constructionist perspective, how these challenges evolved from a nonissue to an impending crisis in less than 25 years. Additionally, present-day efforts by researchers, policymakers, and practitioners to address these challenges will be explored and recommendations will be made for future directions.

Mortality of People with Intellectual and Developmental Disabilities from Select US State Disability Service Systems and Medical Claims Data.

BACKGROUND: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. METHODS: Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. RESULTS: Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. CONCLUSIONS: Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care.

[Risk assessment of pre-term infants]. / Risiken bei Zustand nach Frühgeburt. Grundlagen für die medizinische Risikoprüfung.

Pre-term birth occurs when a baby is born before 37 weeks of gestation are completed. Many recent publications on neurodevelopmental and somatic outcome parameters of premature infants are of interest for insurance medicine. Infants born before the 28th week are called extremely pre-term. When examined at five years, 85% had already received or still needed special treatment or support. The results of examinations in early childhood have quite a low predictive value for the further development of the child. In the very and moderately pre-term stages, long-term risks are continuously declining with the length of gravidity. Even "late pre-term" birth (34 to 36 weeks of gestation) is associated with a nearly doubled rate of developmental impairment and chronic disease in childhood and adolescence. Various studies performed in early adulthood showed that former pre-term infants suffered more often from asthma and psychiatric disorders. On average, they also had higher blood pressure, lower insulin sensitivity, and a reduced exercise capacity. It remains to be evaluated how much these risk factors contribute to cardiovascular or pulmonary morbidity and mortality later in life. At least, general mortality after preterm birth seems to be increased up to the oldest age group statistically evaluated up to now, i.e. 18 to 36 years.

An integrated scientific framework for child survival and early childhood development.

Building a strong foundation for healthy development in the early years of life is a prerequisite for individual well-being, economic productivity, and harmonious societies around the world. Growing scientific evidence also demonstrates that social and physical environments that threaten human development (because of scarcity, stress, or instability) can lead to short-term physiologic and psychological adjustments that are necessary for immediate survival and adaptation, but which may come at a significant cost to long-term outcomes in learning, behavior, health, and longevity. Generally speaking, ministries of health prioritize child survival and physical well-being, ministries of education focus on schooling, ministries of finance promote economic development, and ministries of welfare address breakdowns across multiple domains of function. Advances in the biological and social sciences offer a unifying framework for generating significant societal benefits by catalyzing greater synergy across these policy sectors. This synergy could inform more effective and efficient investments both to increase the survival of children born under adverse circumstances and to improve life outcomes for those who live beyond the early childhood period yet face high risks for diminished life prospects.

Excess mortality in remote symptomatic epilepsy.

BACKGROUND: Published estimates of excess mortality associated with epilepsy vary greatly. How much, if any, of the excess is attributable to the seizures themselves as opposed to an underlying condition causing the epilepsy is not clear from the literature. This article offers evidence that epilepsy per se is associated with excess mortality. The excess varies according to severity and frequency of seizures. MATERIALS AND METHODS: The authors studied mortality rates of developmentally disabled persons in California with and without epilepsy. In order to focus on the effect on mortality risk of epilepsy per se, they included only persons with good motor function (able to walk and climb stairs) and at worst moderate mental retardation (MR). The data were 506,204 person-years and 1523 deaths among 80,682 California subjects of age 5 to 65 years during the 1988-1999 study period. Mortality rates for persons with epilepsy were compared to rates for persons with no history of epilepsy. RESULTS: Mortality rates were higher for persons with epilepsy than for those without. Excess death rates (EDRs) varied according to type and frequency of seizures. Combined EDRs were 6 (deaths per 1000 person-years) for persons with recent (< 12 months) history of status epilepticus, 5 for recent history of generalized tonic-clonic (GTC) seizures, 3 for recent history of seizures but no recent GTC seizures, and less than 1 for a history of seizures but no recent events. CONCLUSIONS: The data presented here are evidence that epilepsy per se is associated with increased mortality. The EDRs reported here may be better measures of excess mortality due to epilepsy than previously published estimates.

Serial assessment of mortality in the neonatal intensive care unit by algorithm and intuition: certainty, uncertainty, and informed consent.

OBJECTIVES: Does predictive power for outcomes of neonatal intensive care unit (NICU) patients get better with time? Or does it get worse? We determined the predictive power of Score for Neonatal Acute Physiology (SNAP) scores and clinical intuitions as a function of day of life (DOL) for newborn infants admitted to our NICU. METHODS: We identified 369 infants admitted to our NICU during 1996-1997 who required mechanical ventilation. We calculated SNAP scores on DOL 1, 3, 4, 5, 7, 10, 14, 21, 28, and weekly thereafter until either death or extubation. We also asked nurses, residents, fellows, and attendings on each day of mechanical ventilation: "Do you think this child is going to live to go home to their family, or die before hospital discharge?" RESULTS: Two thousand twenty-eight SNAP scores were calculated for 285 infants. On DOL 1, SNAP for nonsurvivors (24 +/- 8.7 [standard deviation]) was significantly higher than SNAP for survivors (13 +/- 6.1). However, this difference diminished steadily and by DOL 10 was no longer statistically significant (12.7 +/- 4.9 vs 10.0 +/- 4.8). On each NICU day, at all ranges of SNAP scores, there were at least as many infants who would ultimately survive as would die. Consequently, the positive predictive value of any SNAP value for subsequent mortality was <0.5 on all NICU days. Prediction profiles were obtained for 230 ventilated infants reflecting over 11 000 intuitions obtained on 2867 patient days. One hundred fifty-seven (81%) of 192 survivor profiles displayed consistent accurate prediction profiles-at least 90% of their NICU ventilation days were characterized by 100% prediction of survival. Twenty-five (13%) of 192 surviving infants survived somewhat unexpectedly; that is, after at least 1 day characterized by at least 1 estimate of "death." Thirty-three (60%) of the 55 nonsurvivors died before DOL 10. Eighty-two percent of the prediction profiles for these early dying infants were homogeneous, dismal, and accurate. Twenty-two (40%) of the 55 nonsurvivors died after DOL 10. Seventeen (78%) of these 22 late-dying infants were predicted to live by many observers on many hospital days. Sixty-one (30%) of 230 profiled patients had at least 1 NICU day characterized by at least 1 prediction of death; 26/61 (43%) of these patients were incorrectly predicted; that is, they survived. Seventeen infants who were predicted to die during but survived nonetheless were assessed neurologically at 1 year. Fourteen (82%) of these 17 were not neurologically normal-8 were clearly abnormal, 1 suspicious, and 5 had died. CONCLUSIONS: If absolute certainty about mortality is the only criterion that can justify a decision to withhold or withdraw life-sustaining treatment in the NICU, these data would make such decisions difficult on the first day of life, and increasingly problematic thereafter. However, if we acknowledge that medicine is inevitably an inexact science and that clinical predictions can never be perfect, we can ask the more interesting question of whether good but less-than-perfect predictions of imprecise but ethically relevant clinical outcomes can still be useful. We think that they can-and that they must.