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.

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.

Defining the Impact of Social Drivers on Health Outcomes for People with Inherited Bleeding Disorders.

The ways in which the social drivers of health, also known as the social determinants of health (SDOH), affect health outcomes for people with inherited bleeding disorders (PwIBDs) is unclear. This systematic review of the published literature examines the impact of SDOH on health outcomes in PwIBDs. Articles that included the following parameters in PubMed informed this study: published in English between 2011-2021; available in free full text; study population diagnosed with an inherited bleeding disorder; and study measured at least one of the clinical/non-clinical outcome measures: bleeding frequency, chronic pain, mortality, quality of life (QOL), and/or cost. The main findings from the 13 included articles emphasized the unmet need for reducing the economic burden with sustainable population health strategies and treatment options for PwIBDs. Rural location was also a significant contributor to both delayed diagnosis and decreased access to care. Furthermore, the need for a multidisciplinary comprehensive care team to address physical, psychosocial, and emotional needs of PwIBDs was raised as a priority target in the desire for equitable and optimal health. This systematic literature review suggests that the SDOH are associated with inferior health outcomes and may influence the clinical progression of inherited bleeding disorders.

Effect of lifestyle interventions on cardiovascular risk factors among adults without impaired glucose tolerance or diabetes: A systematic review and meta-analysis.

Structured lifestyle interventions can reduce diabetes incidence and cardiovascular disease (CVD) risk among persons with impaired glucose tolerance (IGT), but it is unclear whether they should be implemented among persons without IGT. We conducted a systematic review and meta-analyses to assess the effectiveness of lifestyle interventions on CVD risk among adults without IGT or diabetes. We systematically searched MEDLINE, EMBASE, CINAHL, Web of Science, the Cochrane Library, and PsychInfo databases, from inception to May 4, 2016. We selected randomized controlled trials of lifestyle interventions, involving physical activity (PA), dietary (D), or combined strategies (PA+D) with follow-up duration ≥12 months. We excluded all studies that included individuals with IGT, confirmed by 2-hours oral glucose tolerance test (75g), but included all other studies recruiting populations with different glycemic levels. We stratified studies by baseline glycemic levels: (1) low-range group with mean fasting plasma glucose (FPG) <5.5mmol/L or glycated hemoglobin (A1C) <5.5%, and (2) high-range group with FPG ≥5.5mmol/L or A1C ≥5.5%, and synthesized data using random-effects models. Primary outcomes in this review included systolic blood pressure (SBP), diastolic blood pressure (DBP), total cholesterol (TC), low density lipoprotein cholesterol (LDL-C), high density lipoprotein cholesterol (HDL-C), and triglycerides (TG). Totally 79 studies met inclusion criteria. Compared to usual care (UC), lifestyle interventions achieved significant improvements in SBP (-2.16mmHg[95%CI, -2.93, -1.39]), DBP (-1.83mmHg[-2.34, -1.31]), TC (-0.10mmol/L[-0.15, -0.05]), LDL-C (-0.09mmol/L[-0.13, -0.04]), HDL-C (0.03mmol/L[0.01, 0.04]), and TG (-0.08mmol/L[-0.14, -0.03]). Similar effects were observed among both low-and high-range study groups except for TC and TG. Similar effects also appeared in SBP and DBP categories regardless of follow-up duration. PA+D interventions had larger improvement effects on CVD risk factors than PA alone interventions. In adults without IGT or diabetes, lifestyle interventions resulted in significant improvements in SBP, DBP, TC, LDL-C, HDL-C, and TG, and might further reduce CVD risk.

Effect of lifestyle interventions on glucose regulation among adults without impaired glucose tolerance or diabetes: A systematic review and meta-analysis.

This study systematically assessed the effectiveness of lifestyle interventions on glycemic indicators among adults (⩾18years) without IGT or diabetes. Randomized controlled trials using physical activity (PA), diet (D), or their combined strategies (PA+D) with follow-up ⩾12months were systematically searched from multiple electronic-databases between inception and May 4, 2016. Outcome measures included fasting plasma glucose (FPG), glycated hemoglobin (HbA1c), fasting insulin (FI), homeostasis model assessment-estimated insulin resistance (HOMA-IR), and bodyweight. Included studies were divided into low-range (FPG <5.5mmol/L or HbA1c <5.5%) and high-range (FPG ⩾5.5mmol/L or HbA1c ⩾5.5%) groups according to baseline glycemic levels. Seventy-nine studies met inclusion criteria. Random-effect models demonstrated that compared with usual care, lifestyle interventions achieved significant reductions in FPG (-0.14mmol/L [95%CI, -0.19, -0.10]), HbA1c (-0.06% [-0.09, -0.03]), FI (%change: -15.18% [-20.01, -10.35]), HOMA-IR (%change: -22.82% [-29.14, -16.51]), and bodyweight (%change: -3.99% [-4.69, -3.29]). The same effect sizes in FPG reduction (0.07) appeared among both low-range and high-range groups. Similar effects were observed among all groups regardless of lengths of follow-up. D and PA+D interventions had larger effects on glucose reduction than PA alone. Lifestyle interventions significantly improved FPG, HbA1c, FI, HOMA-IR, and bodyweight among adults without IGT or diabetes, and might reduce progression of hyperglycemia to type 2 diabetes mellitus.

Association of Socioeconomic Status with Eye Health Among Women With and Without Diabetes.

OBJECTIVE: To investigate the association between socioeconomic position (SEP) and poor eye health among women. MATERIALS AND METHODS: We included the 7,708 women aged ≥ 40 years who participated in the 2008 National Health Interview Survey. We defined poor eye health as self-reported age-related eye diseases (AREDs; cataract, glaucoma, macular degeneration, or diabetic retinopathy) or visual impairment (VI). We identified diagnosed diabetes by self-report. We measured SEP by education attained and annual household income. We conducted logistic regression analyses while controlling for demographic, clinical, behavioral, and healthcare access variables. RESULTS: The age-standardized prevalence of VI and ARED was significantly higher among women with diagnosed diabetes than among those without diagnosed diabetes, 29.8% versus 14.4% and 34.1% versus 20.8%, respectively (p < 0.05 for both). The prevalence of VI and ARED increased with decreasing SEP, but the trends were only significant among women without diabetes. After multivariable adjustment, education and income were significantly associated with VI but not with ARED. We found no interaction with diagnosed diabetes. CONCLUSIONS: SEP was inversely associated with VI but not with ARED. We found no interaction with diagnosed diabetes.