Last data update: Jun 03, 2024. (Total: 46935 publications since 2009)
Records 1-7 (of 7 Records) |
Query Trace: Creary M [original query] |
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Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science
Byams VR , Baker JR , Bailey C , Connell NT , Creary MS , Curtis RG , Dinno A , Guelcher CJ , Kim M , Kulkarni R , Lattimore S , Norris KL , Ramirez L , Skinner MW , Symington S , Tobase P , Vázquez E , Warren BB , Wheat E , Buckner TW . Expert Rev Hematol 2023 16 87-106 BACKGROUND: The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. RESEARCH DESIGN AND METHODS: NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities. RESULTS: WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital. CONCLUSIONS: An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity. | Research into how people get their health care, called health services research, is important to understand if care is being delivered equitably and efficiently. This research figures out how to provide the best care at the lowest cost and finds out if everyone gets equally good care. Diversity and inclusion research focuses on whether all marginalized and minoritized populations (such as a given social standing, race, ethnicity, sex, gender identity, sexuality, age, income, disability status, language, culture, faith, geographic location, or country of birth) receive equitable care. This includes checking whether different populations are all getting the care they need and looking for ways to improve the care. Implementation science studies how to make a potential improvement work in the real world. The improvement could be a new way to diagnose or treat a health condition, a better way to deliver health care or do research, or a strategy to remove barriers preventing specific populations from getting the best available care. The National Hemophilia Foundation focuses on improving the lives of all people with bleeding disorders (BD). They brought BDs doctors, nurses, physical therapists, social workers, professors, and government and industry partners together with people and families living with BDs to discuss research in the areas described above. The group came up with important future research questions to address racism and other biases, and other changes to policies, procedures, and practices to make BD care equitable, efficient, and effective. | eng |
Use of the word "crisis" in sickle cell disease: the language of sickle cell
Savitt TL , Smith WR , Haywood Jr C , Creary MS . J Natl Med Assoc 2014 106 (1) 23-30 Language matters. The words used to name and describe disease phenomena are a reflection of society. The authors address the use of the word "crisis" in SCD from sociological, historical, medical, and patient perspectives. The term "crisis" became associated with sickle cell disease in the mid-1920s, more than a decade after the first description of the disease had been published. The term had been used for centuries in conjunction with fever and as a signifier of severe pain in certain diseases during the nineteenth century. The application of the term to this new disease in the 1920s resulted from physicians' observations of their patients' urgent situations. Though commonly used by health care providers and patients today, "crisis" may not be the appropriate term for sickle cell patients suffering severe pain, because people endure differing amounts of pain before stating they are "in crisis." The result can be undertreatment of the pain or mistrust between physicians and patients about use of strong (narcotic) pain-relievers. Some patients believe the term is useful in communicating the severity of their pain and the urgency of their need for relief from it, especially when seeking care at hospital emergency departments, while others believe "crisis" does not accurately reflect the severity or seriousness of their situation. |
State-based surveillance for selected hemoglobinopathies.
Hulihan MM , Feuchtbaum L , Jordan L , Kirby RS , Snyder A , Young W , Greene Y , Telfair J , Wang Y , Cramer W , Werner EM , Kenney K , Creary M , Grant AM . Genet Med 2014 17 (2) 125-30 PURPOSE: The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies. METHODS: The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information. RESULTS: In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina. CONCLUSION: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems. |
A study of prospective surveillance for inhibitors among persons with haemophilia in the United States
Soucie JM , Miller CH , Kelly FM , Payne AB , Creary M , Bockenstedt PL , Kempton CL , Manco-Johnson MJ , Neff AT . Haemophilia 2013 20 (2) 230-7 Inhibitors are a rare but serious complication of treatment of patients with haemophilia. Phase III clinical trials enrol too few patients to adequately assess new product inhibitor risk. This project explores the feasibility of using a public health surveillance system to conduct national surveillance for inhibitors. Staff at 17 U.S. haemophilia treatment centres (HTC) enrolled patients with haemophilia A and B into this prospective study. HTC staff provided detailed historic data on product use and inhibitors at baseline, and postenrolment patients provided monthly detailed infusion logs. A central laboratory performed inhibitor tests on blood specimens that were collected at baseline, annually, prior to any planned product switch or when clinically indicated. The central laboratory also performed genotyping of all enrolled patients. From January 2006 through June 2012, 1163 patients were enrolled and followed up for 3329 person-years. A total of 3048 inhibitor tests were performed and 23 new factor VIII inhibitors were identified, 61% of which were not clinically apparent. Infusion logs were submitted for 113 205 exposure days. Genotyping revealed 431 distinct mutations causing haemophilia, 151 of which had not previously been reported elsewhere in the world. This study provided critical information about the practical issues that must be addressed to successfully implement national inhibitor surveillance. Centralized testing with routine monitoring and confirmation of locally identified inhibitors will provide valid and representative data with which to evaluate inhibitor incidence and prevalence, monitor trends in occurrence rates and identify potential inhibitor outbreaks associated with products. |
Sickle cell disease the need for a public health agenda
Yusuf HR , Lloyd-Puryear MA , Grant AM , Parker CS , Creary MS , Atrash HK . Am J Prev Med 2011 41 S376-83 Sickle cell disease (SCD) is a collection of inherited blood disorders that affect a substantial number of people in the U.S., particularly African Americans. People with SCD have an abnormal type of hemoglobin, Hb S, which polymerizes when deoxygenated, causing the red blood cells to become misshapen and rigid. Individuals with SCD are at higher risk of morbidity and mortality from infections, vaso-occlusive pain crises, acute chest syndrome, and other complications. Addressing the public health needs related to SCD is an important step toward improving outcomes and maintaining health for those affected by the disorder. The objective of this study was to review public health activities focusing on SCD and define the need to address it more comprehensively from a public health perspective. We found that there has been some progress in the development of SCD-related public health activities. Such activities include establishing newborn screening (NBS) for SCD with all states currently having universal NBS programs. However, additional areas needing focus include strengthening surveillance and monitoring of disease occurrence and health outcomes, enhancing adherence to health maintenance guidelines, increasing knowledge and awareness among those affected, and improving healthcare access and utilization. These and other activities discussed in this paper can help strengthen public health efforts to address SCD. |
Public health implications of sickle cell trait: a report of the CDC meeting
Grant AM , Parker CS , Jordan LB , Hulihan MM , Creary MS , Lloyd-Puryear MA , Goldsmith JC , Atrash HK . Am J Prev Med 2011 41 S435-9 Although the issue of whether sickle cell trait (SCT) is clinically benign or a significant health concern has not yet been resolved, the potential health risk to affected individuals is of vital importance and represents a tremendous challenge in protecting, promoting, and improving the health of the approximately 300 million people worldwide and 3 million people in the U.S. who possess the trait. In response to a request by the Sickle Cell Disease Association of America, in December 2009, the CDC convened a meeting of partners, stakeholders, and experts to identify the gaps in public health, clinical health services, epidemiologic research, and community-based outreach strategies and to develop an agenda for future initiatives. Through facilitated discussion and presentations in four topic areas, participants discussed pertinent issues, synthesized clinical research findings, and developed a coherent framework for establishing an agenda for future initiatives. A primary outcome of the meeting was to provide the first step of an iterative process to move toward agreement regarding appropriate counseling, care, and, potentially, treatment of people with SCT. |
Health status and healthcare use in a national sample of children with sickle cell disease
Boulet SL , Yanni EA , Creary MS , Olney RS . Am J Prev Med 2010 38 S528-35 BACKGROUND: There is a paucity of population-based data describing health status and use of health services among children with sickle cell disease (SCD). PURPOSE: This study provides estimates of co-occurring conditions, health impact and utilization, and barriers to care for a national sample of children with SCD. METHODS: Data were derived from the 1997-2005 National Health Interview Survey Child Sample Core. The study included 192 children aged 0-17 years with SCD whose race was reported as black or African-American, and 19,335 children without SCD of the same age and race. Parents or other knowledgeable adults reported on medical and developmental conditions, health status, and healthcare use and access. RESULTS: After adjusting for demographic characteristics, black children with SCD had higher odds of frequent severe headaches or migraines, intellectual disabilities, regular use of prescription medication, and fair or poor health status compared with black children without SCD. While healthcare and special education services use were generally higher for black children with SCD than for black children in the general population, those with SCD also had higher odds of reporting delays in accessing health care. CONCLUSIONS: The health burden for children with SCD and their families is profound and may be exacerbated by barriers to accessing comprehensive medical care. Additional study of the extent of unmet needs for U.S. children with SCD is warranted. |
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