BACKGROUND: On July 28, 2022, floods in eastern Kentucky displaced over 600 individuals. With the goal of understanding mental health needs of affected families, we surveyed households living in flood evacuation shelters after the 2022 Kentucky floods. METHODS: Families experiencing displacement from the 2022 Kentucky floods currently living in three different temporary shelter locations were surveyed via convenience sampling. A rapid community needs assessment involving in-person interviews using modified two stage cluster methodology (CASPER) was conducted between September 6-9, 2022. RESULTS: Teams conducted 61 household interviews. Since the flood, 27.7% reported that their household received services from behavioral health and 19.6% received grief counseling. Experiencing agitation (36.7%), difficulty concentrating (47.5%), nightmares (62.3%), or suicidal thoughts/self-harm (6.6%) were reported by households surveyed. Over one-fourth (27.0%) of individuals surveyed reported being depressed nearly every day. Over 20% reported anhedonia (inability to feel pleasure) nearly every day. Over 75% of individuals surveyed reported being anxious several days or more over the last two weeks. Over one-third of individuals (34.0%) reported being unable to stop worrying nearly every day. Of those individuals surveyed, 36.1% reported barriers to mental health services. CONCLUSIONS: Symptoms of depressed mood, anhedonia, anxiety, and nightmares were prevalent in displaced families six weeks after the 2022 Kentucky floods. Providing and encouraging access to mental health services are important priorities during disaster recovery.

Hypertension is one of the most important risk factors that contribute to incident cardiovascular events. A multitude of US and international hypertension guidelines, scientific statements, and policy statements have recommended evidence-based approaches for hypertension management and improved blood pressure (BP) control. These recommendations are based largely on high-quality observational and randomized controlled trial data. However, recent published data demonstrate troubling temporal trends with declining BP control in the United States after decades of steady improvements. Therefore, there is a widening disconnect between what hypertension experts recommend and actual BP control in practice. This scientific statement provides information on the implementation strategies to optimize hypertension management and to improve BP control among adults in the United States. Key approaches include antiracism efforts, accurate BP measurement and increased use of self-measured BP monitoring, team-based care, implementation of policies and programs to facilitate lifestyle change, standardized treatment protocols using team-based care, improvement of medication acceptance and adherence, continuous quality improvement, financial strategies, and large-scale dissemination and implementation. Closing the gap between scientific evidence, expert recommendations, and achieving BP control, particularly among disproportionately affected populations, is urgently needed to improve cardiovascular health.

The National Clinical Care Commission (NCCC) was established by Congress to make recommendations to leverage federal policies and programs to more effectively prevent and treat diabetes and its complications. The NCCC developed a guiding framework that incorporated elements of the Socioecological and Chronic Care Models. It surveyed federal agencies and conducted follow-up meetings with representatives from 10 health-related and 11 non-health-related federal agencies. It held 12 public meetings, solicited public comments, met with numerous interested parties and key informants, and performed comprehensive literature reviews. The final report, transmitted to Congress in January 2022, contained 39 specific recommendations, including 3 foundational recommendations that addressed the necessity of an all-of-government approach to diabetes, health equity, and access to health care. At the general population level, the NCCC recommended that the federal government adopt a health-in-all-policies approach so that the activities of non-health-related federal agencies that address agriculture, food, housing, transportation, commerce, and the environment be coordinated with those of health-related federal agencies to affirmatively address the social and environmental conditions that contribute to diabetes and its complications. For individuals at risk for type 2 diabetes, including those with prediabetes, the NCCC recommended that federal policies and programs be strengthened to increase awareness of prediabetes and the availability of, referral to, and insurance coverage for intensive lifestyle interventions for diabetes prevention and that data be assembled to seek approval of metformin for diabetes prevention. For people with diabetes and its complications, the NCCC recommended that barriers to proven effective treatments for diabetes and its complications be removed, the size and competence of the workforce to treat diabetes and its complications be increased, and new payment models be implemented to support access to lifesaving medications and proven effective treatments for diabetes and its complications. The NCCC also outlined an ambitious research agenda. The NCCC strongly encourages the public to support these recommendations and Congress to take swift action.

Using national data, we examined emergency department (ED) encounters during 2006-2011 for which a diagnosis code for fragile X syndrome (FXS) was present (n = 7,217). Almost half of ED visits coded for FXS resulted in hospitalization, which is much higher than for ED visits not coded for FXS. ED visits among females coded for FXS were slightly more likely to result in hospitalization. These findings underscore the importance of surveillance systems that could accurately identify individuals with FXS, track healthcare utilization and co-occurring conditions, and monitor quality of care in order to improve care and reduce FXS-associated morbidity.

BACKGROUND: Quantifying the number of people with and types of disabilities is helpful for medical, policy, and public health planning. OBJECTIVE/HYPOTHESIS: To update prior estimates on types, prevalence, and main causes of disability among U.S. adults using the Survey of Income and Program Participation (SIPP) data. METHODS: We used cross-sectional data from the SIPP 2008 Panel Wave 6 interviews collected May-August 2010. Analyses were restricted to non-institutionalized adults ages >/=18 years (n=66,410). Disability was ascertained via five non-mutually exclusive components: 1) specific activity difficulties, 2) selected impairments, 3) use of an assistive aid, 4) household work limitations, and 5) paid work limitations. Prioritized main cause of disability was established for the 95% of respondents with a disability type eligible for health condition questions. We generated weighted population estimates (number and percentage, with 95% confidence intervals (CIs)), accounting for the complex sample survey design. RESULTS: 50 million U.S. adults (21.8%) experienced a disability in 2010. Mobility-related activity limitations were the most prevalent disabilities across all five components. The most common main causes of disability were arthritis/rheumatism, 9.1 million (19.2%, 95% CI=18.4-20.0) and back or spine problems, 8.9 million (18.6%, 95% CI=17.9-19.3). CONCLUSIONS: A growing population with disabilities has the potential to put considerable and unsustainable demand on medical, public health, and senior service systems. Strengthening clinical community linkages and expanding the availability of existing evidence-based public health interventions to prevent, delay, and mitigate the effects of disability could improve health and outcomes for people with disabilities.

OBJECTIVE: To estimate differences in the length of stay and costs for comparable hospitalizations of patients with spina bifida (SB) with and without pressure injuries. DESIGN: Retrospective, cross-sectional, observational study. SETTING: Nationwide Inpatient Sample from years 2010 to 2014. PARTICIPANTS: Hospitalized patients with SB. Hospitalizations among patients with SB and pressure injuries (n=3888) were matched to hospitalizations among patients with SB but without pressure injuries (n=3888). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Differences in length of stay and total costs between the two groups. RESULTS: After successful matching, multivariate modelling of costs and length of stay on matched sample showed that hospitalizations with pressure injuries had an increased 1.2 inpatient days and excess average costs of $1,182. CONCLUSIONS: The estimated average cost of hospitalization increased by 10%, and the estimated average length of stay increased by 24% in the presence of pressure injuries among hospitalized patients with SB, compared with their peers without these injuries. These results highlight the substantial morbidity associated with pressure injuries, which are potentially preventable before or during hospitalizations among persons with SB.

INTRODUCTION: This study examines gender differences in adult hospitalizations with myotonic dystrophy (DM). METHODS: From the Nationwide Inpatient Sample (NIS) 2010-2014, we identified 1,891 adult hospitalizations with a DM diagnosis and constructed a comparison group of hospitalizations without DM using propensity score matching. We calculated relative risk by gender for 44 clinical diagnoses that each accounted for at least 5% of DM hospitalizations. RESULTS: Hospitalizations with DM were longer (4.8 vs. 4.1 days, P<.0001) and more costly ($13,241 vs. $11,458, P<.001) than those without DM. More than half (25 of 44) of the conditions co-occurring with DM hospitalizations did not differ in their relative risks by gender. For those that differed by gender, only five were specific to DM, compared with hospitalizations without DM. DISCUSSION: The results highlight the importance of comprehensive and coordinated care for DM rather than gender-oriented care in the inpatient setting. This article is protected by copyright. All rights reserved.

Care Considerations for Duchenne Muscular Dystrophy were published in 2010. However, little is known about the extent to which these considerations were implemented after publication. With this article, we provide direction on evaluating the uptake of the 2018 Duchenne Muscular Dystrophy Care Considerations. We identify key elements of care and present suggestions for their use in evaluation and research.

BACKGROUND: For 10 years, the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) conducted surveillance for Duchenne and Becker muscular dystrophy (DBMD). We piloted expanding surveillance to other MDs that vary in severity, onset, and sources of care. METHODS: Our retrospective surveillance included individuals diagnosed with one of nine eligible MDs before or during the study period (January 2007-December 2011), one or more health encounters, and residence in one of four U.S. sites (Arizona, Colorado, Iowa, or western New York) at any time within the study period. We developed case definitions, surveillance protocols, and software applications for medical record abstraction, clinical review, and data pooling. Potential cases were identified by International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes 359.0, 359.1, and 359.21 and International Classification of Diseases, Tenth Revision (ICD-10) codes G71.0 and G71.1. Descriptive statistics were compared by MD type. Percentage of MD cases identified by each ICD-9-CM code was calculated. RESULTS: Of 2,862 cases, 32.9% were myotonic, dystrophy 25.8% DBMD, 9.7% facioscapulohumeral MD, and 9.1% limb-girdle MD. Most cases were male (63.6%), non-Hispanic (59.8%), and White (80.2%). About, half of cases were genetically diagnosed in self (39.1%) or family (6.2%). About, half had a family history of MD (48.9%). The hereditary progressive MD code (359.1) was the most common code for identifying eligible cases. The myotonic code (359.21) identified 83.4% of eligible myotonic dystrophy cases (786/943). CONCLUSIONS: MD STARnet is the only multisite, population-based active surveillance system available for MD in the United States. Continuing our expanded surveillance will contribute important epidemiologic and health outcome information about several MDs.

A coordinated, multidisciplinary approach to care is essential for optimum management of the primary manifestations and secondary complications of Duchenne muscular dystrophy (DMD). Contemporary care has been shaped by the availability of more sensitive diagnostic techniques and the earlier use of therapeutic interventions, which have the potential to improve patients' duration and quality of life. In part 2 of this update of the DMD care considerations, we present the latest recommendations for respiratory, cardiac, bone health and osteoporosis, and orthopaedic and surgical management for boys and men with DMD. Additionally, we provide guidance on cardiac management for female carriers of a disease-causing mutation. The new care considerations acknowledge the effects of long-term glucocorticoid use on the natural history of DMD, and the need for care guidance across the lifespan as patients live longer. The management of DMD looks set to change substantially as new genetic and molecular therapies become available.

Fragile X syndrome (FXS) is the most common known inherited cause of intellectual disability (ID). Males and females with FXS exhibit a wide range of intellectual ability and may experience various degrees of emotional, behavioral, sensory, learning, and social difficulties. In 1991, the gene responsible for FXS was identified on the X chromosome at q27.3 and named fragile x mental retardation 1 (FMR1) gene.1 FXS and fragile X–associated disorders (FXD) are caused by a trinucleotide repeat (CGG) expansion mutation in the promoter region (exon 1) of FMR1. Affected individuals with the full FXS mutation have >200 repeats. When the full mutation is present, FMR1 methylation occurs during gestation, which causes silencing of gene transcription.2 This in turn leads to a reduction or absence of fragile X mental retardation protein (FMRP), which is needed for brain development and function. Most males with FXS have ID. A small number of males have less impaired function due to methylation patterns or mosaicism. In females, FMRP levels depend on the X activation ratio, or the percent of cells expressing the normal allele on the active X chromosome,3 resulting in a range of normal intellectual ability to moderate ID. | Over the past 2 decades, scientists have made significant advancements in identifying and describing genetic, molecular, and cellular underpinnings of FXS, allowing for a more precise diagnosis of this condition. The present challenge is to move from accurate diagnosis to public health action for FXS, requiring better understanding of the natural history of FXS, a clear description of how this complex condition affects individuals and their families, and identification of interventions and treatments that can lead to better outcomes. The more we know about this population across the life span, both from a clinical and parent or caregiver perspective, the better we can design treatments, services, and care. The Centers for Disease Control and Prevention (CDC) hosted a meeting in May 2014 to engage FXS stakeholders in the process of framing a public health research agenda geared toward the CDC’s long-term goal of improving care and quality of life for individuals living with FXS and their families (Fig 1).

New developments in the rapid diagnosis and treatment of boys with Duchenne muscular dystrophy (DMD) have led to growing enthusiasm for instituting DMD newborn screening (NBS) in the United States. Our group has been interested in developing clinical guidance to be implemented consistently in specialty care clinics (SCC) charged with the care of pre-symptomatically identified newborns referred after DMD-NBS. We reviewed the existing literature covering patient-centered clinical follow-up after NBS, educational material from public health and advocacy sites, and federal recommendations on effective newborn screening follow-up. We discussed the review as a group and added our own experience to develop materials suitable for initial parent and primary care provider education. These materials and a series of templates for subspecialist encounters could be used to provide consistent care across centers and serve as the basis for ongoing quality improvement.

The mission of public health has been succinctly stated as “the fulfillment of society’s interest in assuring conditions in which people can be healthy” (1). Public and private institutions charged with this mission monitor population health and respond when threats arise. These may be sudden health crises (eg, infectious outbreaks), persistent health problems (eg, chronic diseases), or buildups of environmental risk factors (eg, pollution). Public health practitioners use a combination of disciplines that include basic science, clinical research, epidemiology, statistics, behavioral research, health care services, economics, and policy to identify the primary or secondary causes of health threats and then systematically prevent, mitigate, or suppress these causes in entire populations. This approach has been tremendously successful against infectious diseases and has had notable successes against injuries, accidents, and major chronic diseases (2,3). The purpose of this essay is to highlight the case of a group of nearly 7,000 rare (low-prevalence) diseases, mostly of genetic or congenital origin, for which the applicability of the public health approach, primary prevention in particular, seems limited. We argue that a wider application of this approach could greatly benefit the patients affected by these diseases and their relatives. We start by presenting the challenges of implementing this approach for rare diseases, then we present the need for such an approach and a few notable examples of its successful application to these diseases. Finally, we provide a structured list of public health activities that are key to the management of rare diseases in populations. | A rare disease is a condition that affects fewer than 200,000 people in the United States or no more than 1 of every 2,000 people in Europe (4). Examples of rare diseases are life-threatening and physically or mentally disabling conditions such as Huntington disease, spina bifida, fragile X syndrome, Guillain-Barré syndrome, Crohn disease, cystic fibrosis, and Duchenne muscular dystrophy. Possibly the main reason for the limited applicability of the public health approach to rare diseases is that patients are few and scattered across populations. But another reason is that approaches based on identifying and removing risk factors are generally not well-suited for diseases whose primary risk factors are innate or congenital and therefore irremovable.

OBJECTIVE: To estimate prevalence of childhood-onset Duchenne and Becker muscular dystrophies (DBMD) in 6 sites in the United States by race/ethnicity and phenotype (Duchenne muscular dystrophy [DMD] or Becker muscular dystrophy [BMD]). METHODS: In 2002, the Centers for Disease Control and Prevention established the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to conduct longitudinal, population-based surveillance and research of DBMD in the United States. Six sites conducted active, multiple-source case finding and record abstraction to identify MD STARnet cases born January 1982 to December 2011. We used cross-sectional analyses to estimate prevalence of DBMD per 10 000 boys, ages 5 to 9 years, for 4 quinquennia (1991-1995, 1996-2000, 2001-2005, and 2006-2010) and prevalence per 10 000 male individuals, ages 5 to 24 years, in 2010. Prevalence was also estimated by race/ethnicity and phenotype. RESULTS: Overall, 649 cases resided in an MD STARnet site during ≥1 quinquennia. Prevalence estimates per 10 000 boys, ages 5 to 9 years, were 1.93, 2.05, 2.04, and 1.51, respectively, for 1991-1995, 1996-2000, 2001-2005, and 2006-2010. Prevalence tended to be higher for Hispanic individuals than non-Hispanic white or black individuals, and higher for DMD than BMD. In 2010, prevalence of DBMD was 1.38 per 10 000 male individuals, ages 5 to 24 years. CONCLUSIONS: We present population-based prevalence estimates for DBMD in 6 US sites. Prevalence differed by race/ethnicity, suggesting potential cultural and socioeconomic influences in the diagnosis of DBMD. Prevalence also was higher for DMD than BMD. Continued longitudinal surveillance will permit us to examine racial/ethnic and socioeconomic differences in treatment and outcomes for MD STARnet cases.

OBJECTIVES: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. METHODS: Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist. RESULTS: The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model. CONCLUSIONS: Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden.

PURPOSE: We described the characteristics, treatments, and survival of persons with spina bifida (SB) who developed end stage renal disease (ESRD) from 2004 through 2008 in the United States Renal Data System (USRDS). MATERIALS AND METHODS: We used ICD-9-CM code 741.* to identify persons with SB from hospital inpatient data (1977-2010) and physician and facility claims (2004-2008). We constructed a 5:1 comparison group of ESRD patients without SB matched by age at first ESRD service, gender, and race/ethnicity. We assessed their risk of mortality and of renal transplant while on dialysis using multivariate cause-specific proportional hazards survival analyses. We also compared their survival after their first renal transplant from first ESRD service to August 2011. RESULTS: We identified 439 ESRD patients with SB, who on average developed ESRD at younger ages than patients without SB (41 vs. 62 years, P<0.001) and urological issues were the most common primary cause of their ESRD. Compared to ESRD patients without SB, patients with SB had similar mortality hazard on dialysis and after a transplant. But ESRD patients without SB were more likely to undergo renal transplantation than patients with SB (hazard ratio=1.51, 95% CI=1.13-2.03). Hospitalizations related to urinary tract infections (UTIs) were positively associated with risk of death on dialysis for ESRD patients with SB (hazard ratio=1.42, 95% CI=1.33-1.53). CONCLUSIONS: SB was not associated with elevated mortality among ESRD patients on dialysis or after a renal transplant. Proper urological and bladder management for patients with SB, particularly for adults, is imperative.

This study compares the family financial and employment impacts of having a child with fragile X syndrome (FXS), autism spectrum disorder (ASD), or intellectual disabilities (ID). Data from a 2011 national survey of families of children with FXS were matched with data from the National Survey of Children with Special Health Care Needs 2009-2010 to form four analytic groups: children with FXS (n=189), children with special health care needs with ASD only (n=185), ID only (n=177), or both ASD and ID (n=178). Comparable percentages of parents of children with FXS (60%) and parents of children with both ASD and ID (52%) reported that their families experienced a financial burden as a result of the condition, both of which were higher than the percentages of parents of children with ASD only (39%) or ID only (29%). Comparable percentages of parents of children with FXS (40%) and parents of children with both ASD and ID (46%) reported quitting employment because of the condition, both of which were higher than the percentages of parents of children with ID only (25%) or ASD only (25%). In multivariate analyses controlling for co-occurring conditions and functional difficulties and stratified by age, adjusted odds ratios for the FXS group aged 12-17 years were significantly elevated for financial burden (2.73, 95% CI 1.29-5.77), quitting employment (2.58, 95% CI 1.18-5.65) and reduced hours of work (4.34, 95% CI 2.08-9.06) relative to children with ASD only. Among children aged 5-11 years, the adjusted odds ratios for the FXS group were elevated but statistically insignificant for financial burden (1.63, 95% CI 0.85-3.14) and reducing hours of work (1.34, 95% CI 0.68-2.63) relative to children with ASD only. Regardless of condition, co-occurring anxiety or seizures, limits in thinking, reasoning, or learning ability, and more irritability were significantly associated with more caregiver financial and employment impacts. Proper management of anxiety or seizures and functional difficulties of children with FXS or other developmental disabilities may be important in alleviating adverse family caregiver impacts.

AIM: Persons with spina bifida who adopt unhealthy lifestyles could be at increased risk of adverse health outcomes because the presence of spina bifida may magnify this risk. We estimated overall and age-specific prevalence of selected health risk behaviors (HRBs) in young people with spina bifida and examined the association between HRBs and depression. METHOD: We performed analyses on data obtained from individuals with spina bifida (n=130; mean age 23y SD 4y 5mo; 64 males, 66 females; 64% lumbosacral lesion; 77% with shunt) who participated in a population-based survey conducted by the Arkansas Spinal Cord Commission in 2005. RESULTS: Compared with national estimates, young people with spina bifida tend to eat less healthy diets, do less exercise, and engage in more sedentary activities. Respondents were less likely to use substances (alcohol, tobacco, illegal drugs), which peaked among 25 to 31 year olds. About 90% saw a doctor in the previous year. Nearly one half reported mild or major depressive symptoms. In the logistic regression analysis after controlling for potential confounders (age, sex, ethnic group, education, employment, marital status, living arrangement, level of lesion, presence of shunt, mobility, self-rated health and healthcare utilization), major depressive symptoms were associated with current alcohol drinking (adjusted odds ratio: 4.74; 95% CI 1.18-19.04). INTERPRETATION: Young adults with spina bifida exhibit unhealthy behaviors that continue into their late 20s. The findings highlight the need to increase awareness of their health risk profiles in the spina bifida community and show opportunities for mental health and health risk screening and counseling by healthcare providers.

OBJECTIVES: To determine the optimum strategy for increasing up-to-date (UTD) levels in older Americans, while reducing disparities between White, Black, and Hispanic adults, aged 65 years and older. METHODS: Data were analyzed from the 2008 Behavioral Risk Factor Surveillance System, quantifying the proportion of older Americans UTD with influenza and pneumococcal vaccinations, mammograms, Papanicolaou tests, and colorectal cancer screening. A comparison of projected changes in UTD levels and disparities was ascertained by numerically accounting for UTD adults lacking 1 or more clinical preventive services (CPS). Analyses were performed by gender and race/ethnicity. RESULTS: Expanded provision of specific vaccinations and screenings each increased UTD levels. When those needing only vaccinations were immunized, there was a projected decrease in racial/ethnic disparities in UTD levels (2.3%-12.2%). When those needing only colorectal cancer screening, mammography, or Papanicolaou test were screened, there was an increase in UTD disparities (1.6%-4.5%). CONCLUSIONS: A primary care and public health focus on adult immunizations, in addition to other CPS, offers an effective strategy to reduce disparities while improving UTD levels. (Am J Public Health. Published online ahead of print June 14, 2012: e1-e7. doi:10.2105/AJPH.2012.300701).

OBJECTIVE: To determine the potential moderating effect of seat belt law on seat belt compliance among persons who engage in adverse health behaviors. METHODS: Self-reported use of seat belts and adverse health behaviors in a 2008 US state-based population survey. RESULTS: Seat belt law moderates the use of seat belts among males and females who smoked, males who were physically inactive, and males and females who engaged in multiple risk behaviors. CONCLUSION: There is a need to supplement legislative interventions with more focused behavioral approaches to further increase seat belt compliance among persons who engage in adverse risk behaviors.

We used the 2005-2006 National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.

OBJECTIVE: To describe the health-related quality of life (HRQOL) of persons with/without arthritis in the 50 states and the District of Columbia and to determine correlates of poor HRQOL in persons with arthritis. METHODS: Data from the Behavioral Risk Factor Surveillance System (BRFSS) are used. Descriptive analyses are age-standardized. Multivariate analyses used logistic regression. RESULTS: Of persons 18 and over with arthritis, 27% reported fair/poor health, compared to 12% without arthritis. Mean number of physically unhealthy, mentally unhealthy, and activity-limited days for persons with arthritis exceeded those for persons without arthritis. In regression analyses, black non-Hispanics reported better HRQOL than white non-Hispanics especially in the 14+ versus 0 days comparisons. Yet no difference existed in self-reported health status between these two groups. Having low family income and being unable to work were both strongly associated with poor HRQOL. Being physically active was associated with better HRQOL. Binge drinking was associated with poor HRQOL for some measures but was associated with better self reported health. Cost being a barrier to care and having diabetes were strongly associated with worse HRQOL. CONCLUSION: U. S. adults with arthritis had worse HRQOL than those without. Physical health and mental health were both affected by arthritis; thus efforts to alleviate the arthritis burden should address both domains. Given the current and projected high prevalence of arthritis, we face a significant burden of poor HRQOL. Increasing physical activity, reducing co-morbidities, and increasing access to healthcare could improve HRQOL of persons with arthritis.

OBJECTIVE: In 2005, 27% of adults reported doctor-diagnosed arthritis (DrDx), and 14% reported chronic joint symptoms but no DrDx (i.e., possible arthritis [PA]). We evaluate the value of including persons classified as PA in surveillance of arthritis. METHODS: In 2005, Kansas, Oklahoma, North Carolina, and Utah added extra questions to their Behavioral Risk Factor Surveillance System (BRFSS) telephone survey targeted to a subsample of those classified as PA. RESULTS: Persons classified as PA (n = 2,884) were younger, more often male, and had less activity limitation than persons with DrDx. Of those classified as PA, half had seen a doctor for their symptoms, 12.5% reported arthritis; 61.9% gave other causes. Of the half who had not seen a doctor, most reported mild symptoms (64.8%). CONCLUSION: Only 6.3% of those classified as PA had what we considered arthritis. Most who did not see a doctor reported mild symptoms and, thus, would be unlikely to be amenable to medical and public health interventions for arthritis. Although including PA would slightly improve the sensitivity of detecting arthritis in the population, it would increase false positives that would interfere with targeting state intervention efforts and burden estimates. The ability to add back questions in BRFSS allows reintroduction of PA should national surveillance suggest it is warranted or studies document an increased rate at which PA turns into arthritis. Currently PA does not need to be included in state arthritis surveillance efforts, and limited question space on surveys is better spent on other arthritis issues.

We describe the prevalence of doctor-diagnosed arthritis and its impact on activities, work, and joint pain for 6 racial/ethnic groups: non-Hispanic whites, non-Hispanic blacks, Hispanics, American Indians/Alaska Natives, Asians and Pacific Islanders, and multiracial or "other" respondents. We combined data from the 2002, 2003, and 2006 National Health Interview Survey (n = 85,784) and, after adjusting for age, sex, and body mass index, compared racial/ethnic differences. Arthritis-attributable activity limitation, arthritis-attributable work limitation, and severe joint pain were higher for non-Hispanic blacks, Hispanics, and multiracial or other respondents with arthritis compared with non-Hispanic whites with arthritis. Our finding that arthritis disproportionately affects certain racial/ethnic minorities may be useful for planning interventions.

BACKGROUND: With new data available, we sought to update existing literature on the prevalence of self-reported seat belt use by state, region, and rural/urban status and to estimate the strength of the association between seat belt use and rural/urban status adjusted for type of seat belt law and several other factors. METHODS: We examined data on self-reported use of seat belts from 50 states, the District of Columbia, and three territories using the 2008 Behavioral Risk Factor Surveillance System, a state-based random-digit-dialed telephone survey (n=406,552). Reported seat belt use was assessed by state, U.S. Census regions, and U.S. Department of Agriculture (USDA) rural/urban continuum codes. RESULTS: Overall, 85% of adults in the United States reported they always used seat belts. Regionally, the West had the highest prevalence of persons who reported that they always wear seat belts (89.6%) and the Midwest had the lowest (80.4%). States with primary seat belt laws had the highest prevalence of reported seat belt use, compared with states with secondary or no laws. After adjusting for various sociodemographic characteristics, body mass index, and type of seat belt law, persons in the most densely populated metropolitan areas were significantly more likely to report always wearing seat belts than those in most sparsely populated rural areas (adjusted odds ratio=2.9). CONCLUSION: Our findings reinforce the evidence that primary enforcement seat belt laws are effective for increasing seat belt use, and suggest that upgrading to primary enforcement laws will be an important strategy for reducing crash-related fatalities in rural areas.

The Meningococcus Genome Informatics Platform (MGIP) is a suite of computational tools for the analysis of multilocus sequence typing (MLST) data, at http://mgip.biology.gatech.edu. MLST is used to generate allelic profiles to characterize strains of Neisseria meningitidis, a major cause of bacterial meningitis worldwide. Neisseria meningitidis strains are characterized with MLST as specific sequence types (ST) and clonal complexes (CC) based on the DNA sequences at defined loci. These data are vital to molecular epidemiology studies of N. meningitidis, including outbreak investigations and population biology. MGIP analyzes DNA sequence trace files, returns individual allele calls and characterizes the STs and CCs. MGIP represents a substantial advance over existing software in several respects: (i) ease of use-MGIP is user friendly, intuitive and thoroughly documented; (ii) flexibility--because MGIP is a website, it is compatible with any computer with an internet connection, can be used from any geographic location, and there is no installation; (iii) speed--MGIP takes just over one minute to process a set of 96 trace files; and (iv) expandability--MGIP has the potential to expand to more loci than those used in MLST and even to other bacterial species.