What Women With Disabilities Write in Personal Blogs About Pregnancy and Early Motherhood: Qualitative Analysis of Blogs.

BackgroundMore than 1 in 10 women of reproductive age identify as having some type of disability. Most of these women are able to become pregnant and have similar desires for motherhood as women without disability. Women with disability, however, face greater stigma and stereotyping, additional risk factors, and may be less likely to receive adequate reproductive health care compared with their peers without disability. More and more individuals, including those with disability, are utilizing the internet to seek information and peer support. Blogs are one source of peer-to-peer social media engagement that may provide a forum for women with disability to both share and obtain peer-to-peer information and support. Nevertheless, it is not clear what content about reproductive health and pregnancy and/or motherhood is featured in personal blogs authored by women with spinal cord injury (SCI), traumatic brain injury (TBI), spina bifida, and autism.ObjectiveThe objective of this study was twofold: (1) to examine the information being shared in blogs by women with 4 types of disabilities, namely, SCI, TBI, spina bifida, and autism, about reproductive health, disability, health care, pregnancy, and motherhood; and (2) to classify the content of reproductive health experiences addressed by bloggers to better understand what they viewed as important.MethodsPersonal blogs were identified by searching Google with keywords related to disabilities, SCI, TBI, spina bifida, and autism, and a variety of keywords related to reproductive health. The first 10 pages of each database search in Google, based on the relevance of the search terms, were reviewed and all blogs in these pages were included. Blog inclusion criteria were as follows: (1) written by a woman or care partner (ie, parent or spouse) of a woman with a self-identified diagnosis of SCI, TBI, spina bifida, or autism; (2) focused on the personal experience of health and health care during the prepregnancy, prenatal, antepartum, intrapartum, and/or postpartum periods; (3) written in English; and (4) published between 2013 and 2017. A descriptive and thematic qualitative analysis of blogs and corresponding comments was facilitated with NVivo software and matrix analysis.ResultsOur search strategy identified 125 blogs that met all the inclusion criteria; no blogs written by women with spina bifida were identified. We identified 4 reproductive health themes featured in the blog of women with disabilities: (1) (in)accessible motherhood, (2) (un)supportive others, (3) different, but not different, and (4) society questioning motherhood.ConclusionsThis analysis of personal blogs about pregnancy and health care written by women with SCI, TBI, and autism provides a glimpse into their experiences. The challenges faced by these women and the adaptations they made to successfully navigate pregnancy and early motherhood provide insights that can be used to shape future research

A Glycemia Risk Index (GRI) of Hypoglycemia and Hyperglycemia for Continuous Glucose Monitoring Validated by Clinician Ratings

BackgroundA composite metric for the quality of glycemia from continuous glucose monitor (CGM) tracings could be useful for assisting with basic clinical interpretation of CGM data.MethodsWe assembled a data set of 14-day CGM tracings from 225 insulin-treated adults with diabetes. Using a balanced incomplete block design, 330 clinicians who were highly experienced with CGM analysis and interpretation ranked the CGM tracings from best to worst quality of glycemia. We used principal component analysis and multiple regressions to develop a model to predict the clinician ranking based on seven standard metrics in an Ambulatory Glucose Profile: very low-glucose and low-glucose hypoglycemia; very high-glucose and high-glucose hyperglycemia; time in range; mean glucose; and coefficient of variation.ResultsThe analysis showed that clinician rankings depend on two components, one related to hypoglycemia that gives more weight to very low-glucose than to low-glucose and the other related to hyperglycemia that likewise gives greater weight to very high-glucose than to high-glucose. These two components should be calculated and displayed separately, but they can also be combined into a single Glycemia Risk Index (GRI) that corresponds closely to the clinician rankings of the overall quality of glycemia (r = 0.95). The GRI can be displayed graphically on a GRI Grid with the hypoglycemia component on the horizontal axis and the hyperglycemia component on the vertical axis. Diagonal lines divide the graph into five zones (quintiles) corresponding to the best (0th to 20th percentile) to worst (81st to 100th percentile) overall quality of glycemia. The GRI Grid enables users to track sequential changes within an individual over time and compare groups of individuals.ConclusionThe GRI is a single-number summary of the quality of glycemia. Its hypoglycemia and hyperglycemia components provide actionable scores and a graphical display (the GRI Grid) that can be used by clinicians and researchers to determine the glycemic effects of prescribed and investigational treatments

Health-risk behaviors and type 1 diabetes outcomes in the transition from late adolescence to early emerging adulthood

This study examined within- and between-person associations between health-risk behaviors (smoking, drinking, insulin withholding) and type 1 diabetes (T1D) outcomes (adherence and HbA1c) during the high-risk transition from late adolescence to early emerging adulthood utilizing a 2-year longitudinal study. Beginning in the senior year of high school, participants (n = 197) with T1D completed measures of health-risk behaviors, adherence, and HbA1c annually at three time points. Health-risk behaviors were associated with poorer diabetes outcomes during the transition from late adolescence to early emerging adulthood. These results highlight the importance of monitoring health-risk behaviors regularly and intervening to reduce health-risk behaviors during this important developmental transition

GoFundMe as a Medical Plan: Ecological Study of Crowdfunding Insulin Success

BackgroundIndividuals in need of medical care turn to crowdfunding websites to engage a “crowd” or group for financial support. In the last decade, access to insulin has decreased considerably for several reasons, including the rising cost of insulin, increasing popularity of high-deductible insurance plans, and increasing insurance premiums. Many people with diabetes are forced to ration or go without insulin, and they turn to crowdfunding websites to seek financial donations to purchase insulin needed to reduce health risks and mortality, and sustain quality of life.  ObjectiveThis study aimed to explore crowdfunding campaign requests to purchase insulin in the United States. MethodsIn this retrospective, quantitative, and qualitative study, we coded the text of GoFundMe online crowdfunding campaigns and viral measures (shares, hearts, and comments) from February 25 to April 15, 2019. We described campaigns (N=205) and explored the factors associated with campaign success using correlations and qualitative thematic analysis. ResultsThe majority of campaigns were initiated by middle-aged adults (age 26-64 years; 77/205, 37.6%), those with type 1 diabetes (94/205, 45.9%), and those needing funds owing to insurance coverage issues (125/205, 61.0%). The factors associated with campaign success included requests for ≤US $500 (P=.007) and higher viral measures (shares, P=.007; hearts, P<.001; comments, P=.002). The following 4 themes emerged from the campaign text: (1) desire for self-management and survival, (2) diabetes management untenable given insulin access, (3) aftermath of insulin unaffordability, and (4) privacy issues with crowdfunding. Campaign comments were both supportive (tangible, informational, and emotional) and unsupportive (questioned the need for the campaign and deemed crowdfunding inappropriate). ConclusionsDespite crowdfunding websites being used to support the purchase of insulin, campaigns raised only a fraction of the money requested. Therefore, GoFundMe campaigns are not a reliable solution to obtain funds for insulin in the United States. Applying quantitative and qualitative methods is adequate to analyze online crowdfunding for costs of medications such as insulin. However, it is critical for people with diabetes to use resources other than online crowdfunding to access and obtain insulin owing to low success rates. Clinicians should routinely assess difficulty accessing or affording insulin, and federal health care policies should support lowering the cost of insulin

The 2017 Diabetes Educator and the Diabetes Self-Management Education National Practice Survey.

Purpose The American Association of Diabetes Educators conducts the National Practice Survey (NPS) biennially to document current practice in diabetes education in the United States. The purpose of the study is to obtain insight about factors influencing the work of the diabetes educator. Method The 2017 NPS was comprised of 100 questions covering diabetes educator demographics, profile populations of people with diabetes, practice information, program accreditation, program curriculum, staffing, education delivery methods, data collection, and reporting. The basic survey consisted of 22 questions using branch logic, from which respondents were then directed to questions tailored to their particular practice setting, enabling them to answer only a relevant subset of the remaining questions. The web-based survey was sent to approximately 32 000 individuals who were either members of the American Association of Diabetes Educators (AADE) or Certified Diabetes Educators (CDE) with the National Certification Board for Diabetes Educators (NCBDE) but not AADE members. Weekly reminder e-mails were sent to recipients who had not yet responded. The outreach efforts resulted in the survey being completed by 4696 individuals, a 17% response rate yielding 95% confidence that these responses are within ±5% accuracy. Results Diabetes Self-Management Education and Support (DSMES) continues to be a field dominated by women (95%). Diabetes educators represent a diverse health care profession, with educators indicating most commonly that their primary discipline is nursing (48%), nutrition (38%), and pharmacy (7%). When asked about credentials, 82.6% indicated that they held a CDE, 3.8% held the Board Certified-Advanced Diabetes Management (BC-ADM) credential, and 16.5% held neither the CDE nor the BC-ADM. Nearly 75% characterized their role as a diabetes educator as providing direct patient care. DSMES continued to be provided in a varied array of settings to educationally, socioeconomically, and racially diverse patient populations. DSMES was delivered using a number of different educational strategies. Diabetes educators have direct influence in care and services that people with diabetes receive. Conclusions The results of the 2017 NPS demonstrate that diabetes educators are meeting the needs of varied populations in various practice settings. They are working with individuals with type 1 and type 2 diabetes, those at risk for diabetes, and women with gestational diabetes and are involved in recommending, implementing, and providing key referrals and recommendations for diabetes care, including insulin initiation, titration, medication adjustments, recommendations on devices, and technology. Identified areas for improvement include needs for increased racial and ethnic diversity in the workforce, recruiting young professionals, drawing practice approaches from related disciplines (eg, mental health and disability rehabilitation), and encouraging tracking of more areas of outcomes data. Diabetes educators are playing an increasingly central role within multidisciplinary care teams with people at risk for diabetes, those who have diabetes, and those with other chronic conditions

Metabolic obesity phenotypes and obesity‐related cancer risk in the National Health and Nutrition Examination Survey

Abstract Introduction Body mass index (BMI) fails to identify up to one‐third of normal weight individuals with metabolic dysfunction who may be at increased risk of obesity‐related cancer (ORC). Metabolic obesity phenotypes, an alternate metric to assess metabolic dysfunction with or without obesity, were evaluated for association with ORC risk. Methods National Health and Nutrition Examination Survey participants from 1999 to 2018 (N = 19,500) were categorized into phenotypes according to the metabolic syndrome (MetS) criteria and BMI: metabolically healthy normal weight (MHNW), metabolically unhealthy normal weight (MUNW), metabolically healthy overweight/obese (MHO) and metabolically unhealthy overweight/obese (MUO). Adjusted multivariable logistic regression models were used to evaluate associations with ORC. Results With metabolic dysfunction defined as ≥1 MetS criteria, ORC cases (n = 528) had higher proportions of MUNW (28.2% vs. 17.4%) and MUO (62.6% vs. 60.9%) phenotypes than cancer‐free individuals (n = 18,972). Compared with MHNW participants, MUNW participants had a 2.2‐times higher ORC risk [OR (95%CI) = 2.21 (1.27–3.85)]. MHO and MUO participants demonstrated a 43% and 56% increased ORC risk, respectively, compared to MHNW, but these did not reach statistical significance [OR (95% CI) = 1.43 (0.46–4.42), 1.56 (0.91–2.67), respectively]. Hyperglycaemia, hypertension and central obesity were all independently associated with higher ORC risk compared to MHNW. Conclusions MUNW participants have a higher risk of ORC than other abnormal phenotypes, compared with MHNW participants. Incorporating metabolic health measures in addition to assessing BMI may improve ORC risk stratification. Further research on the relationship between metabolic dysfunction and ORC is warranted

A Telehealth Diabetes Intervention for Rural Populations: Protocol for a Randomized Controlled Trial

BackgroundDiabetes self-management education and support (DSMES) is a crucial component of diabetes care associated with improved clinical, psychosocial, and behavioral outcomes. The American Association of Diabetes Care and Education Specialists, the American Diabetes Association, and the American Academy of Family Physicians all recommend DSMES yet accessing linguistically and culturally appropriate DSMES is challenging in rural areas. The Diabetes One-Day (D1D) program is an established DSMES group intervention that has not been adapted or evaluated in rural communities. ObjectiveThe specific aims of this paper are (1) to adapt the existing D1D program for use in rural communities, called rural D1D (R-D1D); and (2) to conduct a patient-level randomized controlled trial to examine the effects of R-D1D and standard patient education, guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. MethodsThis is a protocol for a pilot type II hybrid implementation-effectiveness trial of a culturally adapted virtual DSMES program for rural populations, R-D1D. We will use Boot Camp Translation, a process grounded in the principles of community-based participatory research, to adapt an existing DSMES program for rural populations, in both English and Spanish. Participants at 2 rural primary care clinics (4 cohorts of N=16 plus care partners, 2 in English and 2 in Spanish) will be randomized to the intervention or standard education control. The evaluation is guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Patient-level effectiveness outcomes (hemoglobin A1c, diabetes distress, and diabetes self-care behaviors) will be assessed using patient-reported outcomes measures and a home A1c test kit. Practice-level and patient-level acceptability and feasibility will be assessed using surveys and interviews. ResultsThis study is supported by the National Institute of Nursing. The study procedures were approved, and the adaptation processes have been completed. Recruitment and enrollment started in July 2021. ConclusionsTo our knowledge, this will be the first study to evaluate both effectiveness and implementation outcomes for virtually delivered DSMES, culturally adapted for rural populations. This research has implications for delivery to other rural locations where access to specialty diabetes care is limited. Trial RegistrationClinicalTrials.gov NCT04600622; https://clinicaltrials.gov/ct2/show/NCT04600622 International Registered Report Identifier (IRRID)DERR1-10.2196/3425

Metabolic dysfunction and obesity‐related cancer: Results from the cross‐sectional National Health and Nutrition Examination Survey

Abstract Background Metabolic syndrome (MetS), a group of risk factors that define metabolic dysfunction in adults, is strongly associated with obesity and is an emerging risk factor for cancer. However, the association of MetS and degree of metabolic dysfunction with obesity‐related cancer is unknown. Methods Using National Health and Nutrition Examination Survey data from 1999 to 2018, we identified 528 obesity‐related cancer cases and 18,972 cancer‐free participants. MetS was defined as the presence of or treatment for ≥3 of hyperglycemia, hypertension, hypertriglyceridemia, low HDL–cholesterol, and abdominal obesity. A metabolic syndrome score (MSS) was computed as the total number of abnormal MetS parameters to determine the severity of metabolic dysfunction. Odds ratios (ORs) and 95% confidence intervals (CIs) were estimated using multivariable logistic regression models, adjusting for sociodemographic and lifestyle factors. Results About 45.7% of obesity‐related cancer cases were classified as having MetS compared with only 33.0% of cancer‐free participants. Overall, MetS and MSS were not associated with obesity‐related cancer. However, MSS was associated with higher obesity‐related cancer risk among participants under 50 years of age (OR [95% CI] = 1.28 [1.08–1.52]). When evaluating MSS categorically, compared with healthy participants with no abnormal MetS parameters (MSS = 0), participants with one or two abnormal parameters had a statistically significant higher risk of obesity‐related cancer (OR [95% CI] = 1.73 [1.06–2.83]). Conclusions Metabolic dysfunction is associated with a higher risk of obesity‐related cancer, particularly in young adults under 50 years of age, and among participants with one or two abnormal metabolic parameters. A more accurate indicator of metabolic dysfunction, beyond metabolic syndrome, is needed to better assist in stratifying individuals for obesity‐related cancer risk