; for the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup IMPORTANCE Down syndrome is the most common chromosomal condition, and average life expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite the unique clinical comorbidities among adults with Down syndrome, there are no clinical guidelines for the care of these patients. OBJECTIVE To develop an evidence-based clinical practice guideline for adults with Down syndrome. EVIDENCE REVIEW The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup (n = 13) developed 10 Population/Intervention/ Comparison/Outcome (PICO) questions for adults with Down syndrome addressing multiple clinical areas including mental health (2 questions), dementia, screening or treatment of diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. These questions guided the literature search in MEDLINE,

An emerging, cost-effective method to examine prevalent and future health risks of persons with disabilities is electronic health record (EHR) analysis. As an example, a case-control EHR analysis of adults with autism spectrum disorder receiving primary care through the Cleveland Clinic from 2005 to 2008 identified 108 adults with autism spectrum disorder. In this cohort, rates of chronic disease included 34.9% for obesity, 31.5% for hyperlipidemia, and 19.4% for hypertension. Compared with a control cohort of patients from the same health system matched for age, sex, race, and health insurance status, adults with autism spectrum disorder were more likely to be diagnosed with hyperlipidemia (odds ratio  =  2.0, confidence interval  =  1.2-3.4, p  =  .012). Without intervention, adults with autism spectrum disorder appear to be at significant risk for developing diabetes, coronary heart disease, and cancer by midlife.

BACKGROUND: Patient activation interventions (PAIs) engage patients in care by promoting increased knowledge, confidence, and/or skills for disease self-management. However, little is known about the impact of these interventions on a wide range of outcomes for adults with type 2 diabetes (DM2), or which of these interventions, if any, have the greatest impact on glycemic control. METHODS: Electronic databases were searched from inception through November 2011. Of 16,290 citations, two independent reviewers identified 138 randomized trials comparing PAIs to usual care/control groups in adults with DM2 that reported intermediate or longterm outcomes or harms. For meta-analyses of continuous outcomes, we used a random-effects model to derive pooled weighted mean differences (WMD). For allcause mortality, we calculated the pooled odds ratio (OR) using Peto's method. We assessed statistical heterogeneity using the I 2 statistic and conducted meta-regression using a random-effects model when I 2 >50 %. A priori meta-regression primary variables included: intervention strategies, intervention leader, baseline outcome value, quality, and study duration. RESULTS: PAIs modestly reduced intermediate outcomes [A1c: WMD 0.37 %, CI 0.28-0.45 %, I 2 83 %; SBP: WMD 2.2 mmHg, CI 1.0-3.5 mmHg, I 2 72 %; body weight: WMD 2.3 lbs, CI 1.3-3.2 lbs, I 2 64 %; and LDLc: WMD 4.2 mg/dL, CI 1.5-6.9 mg/dL, I 2 64 %]. The evidence was moderate for A1c, low/very low for other intermediate outcomes, low for long-term mortality and very low for complications. Interventions had no effect on hypoglycemia (evidence: low) or short-term mortality (evidence: moderate). Higher baseline A1c, pharmacistled interventions, and longer follow-up were associated with larger A1c improvements. No intervention strategy outperformed any other in adjusted meta-regression. CONCLUSIONS: PAIs modestly improve A1c in adults with DM2 without increasing short-term mortality. These results support integration of these interventions into primary care for adults with uncontrolled glycemia, and provide evidence to insurers who do not yet cover these programs. INTRODUCTIONType 2 diabetes is common and contributes to excess morbidity, mortality, and health care costs, accounting for approximately one in five U.S. health care dollars. 1,2 Behavioral interventions are one important way to improve patient outcomes, 3 yet less is known about a subset of novel behavioral interventions focused on engaging patients in care 4-6 (often termed "patient activation" 7,8 ). Hibbard et al. 7,9 have described patient activation interventions as those that promote motivation, knowledge, and disease self-management skills. 7,9 Despite the growing evidence suggesting improved patient outcomes by engaging patients, 4-6,10 these interventions are often not integrated into practice due to uncertainty about benefit, lack of resources needed for integration, lack of health insurance coverage across insurers, and lack of clarity on the best strategies to incorporate. 11,12 Understanding the imp...