Transitioning patients with developmental disabilities to adult care.

The pre-visit questionnaire, instructive videos, and Web resources detailed here can help you play a pivotal role in planning, commencing, and solidifying this transition.

A Community-Health System Intervention to Improve the Primary Healthcare of Adults With Down Syndrome Through Electronic Consultations.

Health systems often fail to tap the expertise of the developmental disabilities community support and service system. In this 9-month pilot health system-level quality improvement project, a multi-disciplinary team of physician, pharmacist, and disabilities advocate reviewed electronic records of patients with Down syndrome in advance of pre-scheduled appointments with their primary care physician (PCP) and generated 100 electronic consultations. Post-consultation chart review documented meaningful uptake of clinical recommendations, including screening for thyroid disease, celiac disease, and heart disease, pneumococcal vaccination, and screening physical examination for myelopathy. In addition to clinical recommendations regarding screening, diagnosis, and treatment, each consultation provided an average of eight tailored suggestions for potential community-based resources related to mental and behavioral health, recreation, socialization, and other relevant services and supports. "Push" multi-disciplinary electronic consultations in advance of primary care appointments enriched with input from disabilities community experts have the potential to improve the quality of health care provided to persons with developmental disabilities.

Medical Care of Adults With Down Syndrome: A Clinical Guideline.

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, EMBASE, PubMed, PsychINFO, Cochrane Library, and the TRIP Database, searched from January 1, 2000, to February 26, 2018, with an updated search through August 6, 2020. Using the GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) methodology and the Evidence-to-Decision framework, in January 2019, the 13-member Workgroup and 16 additional clinical and scientific experts, nurses, patient representatives, and a methodologist developed clinical recommendations. A statement of good practice was made when there was a high level of certainty that the recommendation would do more good than harm, but there was little direct evidence. Findings: From 11 295 literature citations associated with 10 PICO questions, 20 relevant studies were identified. An updated search identified 2 additional studies, for a total of 22 included studies (3 systematic reviews, 19 primary studies), which were reviewed and synthesized. Based on this analysis, 14 recommendations and 4 statements of good practice were developed. Overall, the evidence base was limited. Only 1 strong recommendation was formulated: screening for Alzheimer-type dementia starting at age 40 years. Four recommendations (managing risk factors for cardiovascular disease and stroke prevention, screening for obesity, and evaluation for secondary causes of osteoporosis) agreed with existing guidance for individuals without Down syndrome. Two recommendations for diabetes screening recommend earlier initiation of screening and at shorter intervals given the high prevalence and earlier onset in adults with Down syndrome. Conclusions and Relevance: These evidence-based clinical guidelines provide recommendations to support primary care of adults with Down syndrome. The lack of high-quality evidence limits the strength of the recommendations and highlights the need for additional research.

Direct Support Professionals' Perspectives on Ambulatory Health Care Processes and Quality.

Direct support professionals (DSPs) frequently accompany persons with intellectual and other developmental disabilities (IDD) to their health care appointments and could offer valuable insights into potential target areas for health-care improvement. DSPs completed surveys assessing healthcare processes and quality immediately following 118 ambulatory health care encounters involving their patients with IDD. Although DSPs generally judged the quality of health care as good (44%) or excellent (52%), they also observed that physicians directed questions to the DSP that the patient could have answered in 22% of encounters, and noted that physicians failed to ask critical psychosocial information in 24% of encounters. Competency-based training of DSPs around health-care advocacy could significantly improve the quality of health care provided to persons with IDD.

A participatory model of the paradox of primary care.

PURPOSE: The paradox of primary care is the observation that primary care is associated with apparently low levels of evidence-based care for individual diseases, but systems based on primary care have healthier populations, use fewer resources, and have less health inequality. The purpose of this article is to explore, from a complex systems perspective, mechanisms that might account for the effects of primary care beyond disease-specific care. METHODS: In an 8-session, participatory group model-building process, patient, caregiver, and primary care clinician community stakeholders worked with academic investigators to develop and refine an agent-based computer simulation model to test hypotheses about mechanisms by which features of primary care could affect health and health equity. RESULTS: In the resulting model, patients are at risk for acute illness, acute life-changing illness, chronic illness, and mental illness. Patients have changeable health behaviors and care-seeking tendencies that relate to their living in advantaged or disadvantaged neighborhoods. There are 2 types of care available to patients: primary and specialty. Primary care in the model is less effective than specialty care in treating single diseases, but it has the ability to treat multiple diseases at once. Primary care also can provide disease prevention visits, help patients improve their health behaviors, refer to specialty care, and develop relationships with patients that cause them to lower their threshold for seeking care. In a model run with primary care features turned off, primary care patients have poorer health. In a model run with all primary care features turned on, their conjoint effect leads to better population health for patients who seek primary care, with the primary care effect being particularly pronounced for patients who are disadvantaged and patients with multiple chronic conditions. Primary care leads to more total health care visits that are due to more disease prevention visits, but there are reduced illness visits among people in disadvantaged neighborhoods. Supplemental appendices provide a working version of the model and worksheets that allow readers to run their own experiments that vary model parameters. CONCLUSION: This simulation model provides insights into possible mechanisms for the paradox of primary care and shows how participatory group model building can be used to evaluate hypotheses about the behavior of such complex systems as primary health care and population health.

Breast Cancer Stage and Treatment Among Ohio Medicaid Beneficiaries With and Without Mental Illness.

PURPOSE: There is a dearth of studies on cancer outcomes in individuals with mental illness. We compared breast cancer outcomes in Medicaid beneficiaries with and without mental illness. METHODS: Using records from the 1996 to 2005 Ohio Cancer Incidence Surveillance System (OCISS) and Medicaid files, we identified fee-for-service women age < 65 years diagnosed with incident invasive breast cancer who had enrolled in Medicaid ≥ 3 months before cancer diagnosis (n = 2,177). We retrieved cancer stage, patient demographics, and county of residence from the OCISS. From Medicaid claims data, we identified breast cancer treatment based on procedure codes and mental illness status based on diagnosis codes, prescription drugs dispensed, and service codes. We developed logistic regression models to examine the association between mental illness, cancer stage, and treatment for locoregional disease, adjusting for potential confounders. RESULTS: Women with mental illness represented 60.2% of the study population. Adjusting for potential confounders, women with mental illness were less likely than those without mental illness to have unstaged or unknown-stage cancer (adjusted odds ratio [OR], 0.61; 95% CI, 0.44 to 0.86; P = .005) or to be diagnosed with distant-stage cancer (adjusted OR, 0.59; 95% CI, 0.40 to 0.85; P = .005). We observed no difference by mental illness status in receipt of definitive treatment (adjusted OR, 1.04; 95% CI, 0.84 to 1.29; P = .08). CONCLUSION: Among Ohio Medicaid beneficiaries, women with mental illness did not experience disparities in breast cancer stage or treatment of locoregional disease. These findings may reflect the equalizing effects of Medicaid through vulnerable individuals' improved access to both physical and mental health care.

Community-engagement strategies of the developmental disabilities practice-based research network (DD-PBRN).

There is often a rich but untold history of events that occur and relationships that form before a practice-based research network (PBRN) is launched. This is particularly the case in PBRNs that are community based and comprise partnerships outside of the health care system. In this article we summarize an organizational "prenatal history" before the birth of a PBRN devoted to people with developmental disabilities. Using a case study approach, this article describes the historic events that preceded and fostered the evolution of this PBRN and contrasts how the processes leading to the creation of this multistakeholder, community-based PBRN differ from those of typical academic/clinical practice PBRNs. We propose potential advantages and complexities inherent to this newest iteration of PBRNs.

Effectiveness and safety of patient activation interventions for adults with type 2 diabetes: systematic review, meta-analysis, and meta-regression.

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 long-term outcomes or harms. For meta-analyses of continuous outcomes, we used a random-effects model to derive pooled weighted mean differences (WMD). For all-cause 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 LDL-c: 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, pharmacist-led 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.

Analyzing excess mortality from cancer among individuals with mental illness.

BACKGROUND: The objective was to compare patterns of site-specific cancer mortality in a population of individuals with and without mental illness. METHODS: This was a cross-sectional, population-based study using a linked data set comprised of death certificate data for the state of Ohio for the years 2004-2007 and data from the publicly funded mental health system in Ohio. Decedents with mental illness were those identified concomitantly in both data sets. We used age-adjusted standardized mortality ratios (SMRs) in race- and sex-specific person-year strata to estimate excess deaths for each of the anatomic cancer sites. RESULTS: Overall, there was excess mortality from cancer associated with having mental illness in all the race/sex strata: SMR, 2.16 (95% CI, 1.85-2.50) for black men; 2.63 (2.31-2.98) for black women; 3.89 (3.61-4.19) for nonblack men; and 3.34 (3.13-3.57) for nonblack women. In all the race/sex strata except for black women, the highest SMR was observed for laryngeal cancer, 3.94 (1.45-8.75) in black men and 6.51 (3.86-10.35) and 6.87 (3.01-13.60) in nonblack men and women, respectively. The next highest SMRs were noted for hepatobiliary cancer and cancer of the urinary tract in all race/sex strata, except for black men. CONCLUSIONS: Compared with the general population in Ohio, individuals with mental illness experienced excess mortality from most cancers, possibly explained by a higher prevalence of smoking, substance abuse, and chronic hepatitis B or C infections in individuals with mental illness. Excess mortality could also reflect late-stage diagnosis and receipt of inadequate treatment.

Mental illness and use of screening mammography among Medicaid beneficiaries.

BACKGROUND: Disparities in receipt of preventive services by people with mental illness have been documented previously. However, whether these disparities extend to screening mammography among individuals experiencing comparable barriers to accessing care has not been examined fully. PURPOSE: To determine whether disparities exist in receipt of screening mammography between women with and without mental illness enrolled in Medicaid, a program with documented potential to reduce healthcare disparities. METHODS: Receipt of screening mammography was examined among women aged 50-64 years enrolled in Ohio's Medicaid program during the years 2002-2008 (n=130,088). Receipt of annual screening mammography was examined among those with at least one screening mammography during the study period. Mental illness was identified through diagnostic, service, and pharmacotherapy codes (n=61,661). RESULTS: Compared to women without mental illness, more women with mental illness received at least one screening mammography during the study period (31.7% vs 38.1%, p<0.001). However, after adjusting for potential confounders, including the presence of comorbid conditions and length of enrollment in Medicaid, women with mental illness were 32% less likely to undergo at least one screening mammography (AOR=0.68, 95% CI=0.66, 0.70). Among those who received at least one screening mammography, fewer women with mental illness received screening mammography on an annual basis (5.9% vs 12.7%, p<0.001; AOR=0.53, 95% CI=0.49, 0.56). For all beneficiaries, each year of enrollment in Medicaid increased the likelihood of screening mammography use by at least 50%. CONCLUSIONS: Medicaid beneficiaries with mental illness constitute a particularly vulnerable population for suboptimal breast cancer screening.

Chronic disease risks in young adults with autism spectrum disorder: forewarned is forearmed.

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.

Nursing perspectives on cancer screening in adults with intellectual and other developmental disabilities.

Health care disparities have been documented in cancer screenings of adults with intellectual and other developmental disabilities. Developmental disabilities nurses were surveyed to better understand and improve this deficiency. Two thirds of respondents believed that adults with intellectual and developmental disabilities received fewer cancer screenings compared with the general population. The most frequently cited barriers to cancer screenings were as follows: patient need for sedation, unsuccessful attempts at screening, and failure of the primary care clinician to order cancer screening tests. Nurses observed that health care providers frequently did not tailor cancer screening recommendations to individuals' family histories, life expectancies, or their disability-specific cancer risks. The authors suggest interventions to improve cancer screening centered around education and training, accessibility, financing-insurance, modification of procedures, and patient tracking.

Physicians underestimate calcium intake in women.

BACKGROUND AND OBJECTIVES: Personalized nutritional counseling about calcium intake during office encounters requires rapid estimation of calcium intake. We compared the accuracy of physician estimates to a validated calcium intake measure and characterized women whose intakes were incorrectly deemed inadequate by physicians. METHODS: As part of a controlled trial of brief, office-based calcium intake counseling of women, family physicians estimated calcium intake from patients' self-reported intake of dairy food/beverage intake and from their supplement use. We compared estimates to the Short Calcium Questionnaire (SCQ), a validated 7-day dietary recall measure completed by patients. Sensitivity/specificity of physician-estimated calcium intake was estimated by comparison with the SCQ. RESULTS: For 97 women, SCQ rated 32 (33%) as inadequate, 55 (57%) as adequate, and 10 (10%) as excessive. When compared to SCQ, the sensitivity of physician-estimated calcium intake inadequacy was 97% (95% confidence interval [CI]: 94%-100%), specificity was 51% (95% CI: 41%-61%), and positive predictive value was 49% (95% CI: 39%-59%). Women with underestimated intakes were more likely to report a family history of osteoporosis and take a daily multivitamin. The major source of physician underestimation of calcium intake was underestimate of dairy product contribution. CONCLUSIONS: More accurate estimates of dairy-based calcium intake will lead to greater specificity in identifying inadequate calcium intake.

Electronic Health Record Analysis of the Primary Care of Adults with Intellectual and Other Developmental Disabilities.

BACKGROUND AND AIMS: Adults with intellectual and other developmental disabilities (IDD) are at risk for sub-optimal primary health care. Electronic Health Record (EHR) analyses are an under-utilized resource for studying the health and primary care of this population. METHODS: This was a case-control EHR analysis of adults with IDD provided primary care through the Cleveland Clinic between 2005 and 2008. The IDD cohort was identified by relevant ICD-9 codes in problem list and encounter diagnoses. A comparison cohort matched by age, sex, race, and insurance was also specified. Demographic, health and health service characteristics of the two cohorts were compared. FINDINGS: The IDD cohort consisted of 1267 individuals, mean age 39 years, 54% male, 78% Caucasian. Age, sex, racial, and health insurance characteristics were similar in the 2534 individuals in the comparison cohort. Individuals with IDD were significantly more likely to carry diagnoses of epilepsy, constipation, osteoporosis, obesity, and hyperlipidemia; but were significantly less likely to bear diagnoses of hypertension, diabetes, osteoarthritis, heart failure, coronary heart disease, and COPD. Despite a lower mean BMI, individuals with IDD were more likely to be labeled obese. Only genetic consultation rates were higher in the IDD cohort. DISCUSSION: Health services research related to persons with IDD is becoming more feasible as large health systems adopt EHRs. Further analyses from this dataset will investigate whether variations in disease rates in adults with IDD represent true differences in disease prevalence versus disparities in health care.