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.

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.

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.

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.

Geriatrician training in the care of elders with intellectual and other developmental disabilities.

Adults with intellectual and other developmental disabilities (IDD) are now living to late life. Whether geriatricians are being trained to provide care for this clinically complex subpopulation of elders has not been examined. Two thirds of all geriatric fellowship directors in the United States responded to a Web-based survey of curriculum and training in this area. Forty-four percent rated training in this area as "important" or "very important," but only 26% of directors rated their graduates as moderately or highly competent in caring for elders with IDD. We report our survey findings and implications for future curricular development.

Calcium supplement use by African American women.

INTRODUCTION: Inadequate calcium intake is more common among women belonging to racial and ethnic minorities. This study examined the patterns and characteristics associated with calcium supplement use or nonuse among African American women, and the potential impact of physician recommendation on calcium supplementation. METHODS: African American women aged 19 to 65, attending community outreach activities sponsored by a multispecialty academic medical center in northeastern Ohio, completed a calcium supplement survey. Survey items included demographic and bone health-related information, and rationale for calcium supplement use or nonuse. RESULTS: Of 160 respondents, 14% of women regularly took calcium supplements, 16% were former users, and 70% never used calcium supplements. Characteristics associated with calcium use status included age, multivitamin use, and marital status. Few African American women recall discussions with their doctors about calcium intake. Most who formerly took calcium supplements and most who had never taken them were willing to do so if recommended by their physician. DISCUSSION: Calcium supplement use among African American women in this study was low. However, many of the barriers to calcium supplement use by African American women appear remediable through brief calcium intake counseling by their physician.

Environmental health and developmental disabilities: a life span approach.

Prenatal and childhood environmental exposures are an underrecognized primary cause of intellectual and other developmental disabilities. In addition, individuals with established disabilities are vulnerable to further harm from subsequent environmental exposures. In individuals with communicative impairment or limited ability to independently escape from hazards, these subsequent exposures, too, may occur undetected or untreated. This article introduces the subject of environmental health and developmental disabilities throughout the life span. In particular, we focus on ways that families, communities, and health professionals can prevent both primary and secondary disabilities through better awareness of common environmental health issues.

Barriers to supplemental calcium use among women in suburban family practice: a report from the Cleveland Clinic Ambulatory Research Network (CleAR-eN).

BACKGROUND: The majority of adult women in the United States fail to meet daily calcium intake recommendations. This study was undertaken to (1) identify predictors of calcium supplement use versus non-use, (2) understand barriers to calcium supplementation, and (3) determine the potential impact of physician recommendation on calcium supplement use. METHODS: Surveys were self-administered by 185 women, ages 20 to 64, presenting consecutively for care at 6 suburban community-based family medicine practices within the Cleveland Clinic Ambulatory Research Network (CleAR-eN). We compared demographic characteristics, health beliefs, and health behaviors of those women who reported never using calcium supplements with those who presently took calcium supplements. Women who never took calcium were also queried about reasons for non-use and whether physician recommendation would influence their adoption of calcium supplementation. RESULTS: Multivitamin use, self-perceived risk of osteoporosis, and age were independent predictors of calcium supplement use. Leading barriers for never-users were lack of knowledge about the need/importance of increasing calcium intake, lack of motivation to start supplements, and the belief that their dietary calcium intake alone was sufficient. Ninety-six percent of never-users reported that they would consider taking a calcium supplement if recommended by their physician. CONCLUSIONS: Many patient-identified barriers to calcium supplementation seem amenable to focused and brief office-based interventions that could increase the number of women meeting calcium intake guidelines.

Cancer risk assessment: examining the family physician's role.

BACKGROUND: Cancer risk assessment begins in the primary care clinician's office. Essential components of that process include: 1) documentation of personal and family cancer information; 2) identification of families at increased risk for cancer; 3) modification of cancer screening recommendations according to degree of risk; 4) referral of high-risk individuals to cancer genetics clinics. The purpose of this study was to examine these 4 components of primary care cancer risk assessment using data abstracted from patient records at an academic family medicine center. METHODS: Ambulatory records of 734 patients were reviewed in their entirety for information relevant to cancer risk assessment. Detail of cancer information was categorized as comprehensive, adequate, or inadequate. Patient records were categorized as suggestive of average, moderate, or high genetic risk for cancer. For patients with a family history of colorectal cancer, modification of colon cancer screening to reflect degree of cancer risk was assessed. Finally, the frequency of cancer genetic referral in high-risk individuals was noted. RESULTS: The presence or absence of a family history of cancer was documented in 97.8% of records. There was insufficient information to adequately assess risk in 69.5% of charts. Detail of family cancer documentation was associated with personal history of cancer (P = .001), patient age (P = .001), and physician training status (P = .042), but not with patient or physician gender, duration of care, or completion of a genogram. For persons with a family history of colorectal cancer, compliance with cancer screening individualized to degree of risk was achieved in 50% of patients. Ten patients met criteria for moderate or high genetic risk for cancer. None had been offered cancer genetics consultation. CONCLUSIONS: Nearly all records documented the presence or absence of a family history of cancer. However, in those with a positive family history, the detail of information was insufficient to permit risk assessment in over two thirds of individuals; risk-stratified colon cancer screening was not achieved in half of the patients with a family history of colorectal cancer; individuals at moderate or high cancer risk were not identified as such; and those at high risk were not offered cancer genetics referral. In addition to collecting adequate family cancer information, family physicians need to adopt explicit risk assessment criteria to identify, and to optimally care for, those at increased genetic risk for cancer.

Increased risk of symptomatic gallbladder disease in adults with Down syndrome.

Previous reports have documented an increased prevalence of asymptomatic cholelithiasis among children with Down syndrome. Whether this predisposes adults with Down syndrome to symptomatic gallbladder disease has not been studied. A case control study compared the rate of symptomatic gallbladder disease in 28 index cases of adults with Down syndrome and that of sex-matched controls. The rate of gallbladder disease was 25% among the Down syndrome group, compared to 4.5% among the control group (P = 0.002). Patients with Down syndrome were also more likely to have a family medical history of gallbladder disease. Utilizing logistic regression analysis, the adjusted relative risk for gallbladder disease among individuals with Down syndrome was 3.52.