Exocrine Pancreatic Insufficiency Dosing Guidelines for Pancreatic Enzyme Replacement Therapy Vary Widely Across Disease Types.

BACKGROUND: Pancreatic enzyme replacement therapy (PERT) is the standard treatment for exocrine pancreatic insufficiency (EPI). However, many individuals are inadequately treated, with gaps in clinical dosing, guidelines, and tools to aid individual titration. METHODS: A systematic review identified research and guidelines on PERT dosing recommendations across conditions, systematically reviewing and synthesizing total PERT intake, meal/snack guidelines, and changes over time to provide an up-to-date look at the most common doses used in studies and guidelines. RESULTS: This review of 257 articles found wide variability in PERT dosing guidelines within and across conditions. Many patients with EPI are underdosed, with guidelines differing globally and by disease type, and clinician prescribing may also play a role. The most common dosing guidelines focus on starting doses at 40,000-50,000 units of lipase/meal with increases of up to two to three times this amount before pursuing additive therapies. Guidelines and studies typically focus only on fat digestion, and comparison by total daily dose shows underdosing is common. Most PERT studies are on safety and efficacy rather than optimal titration. CONCLUSION: The current guidelines for PERT in EPI demonstrate substantial variability in dosing recommendations, both within and across disease types. This variation highlights the need for further research to optimize PERT dosing and improve patient outcomes. Healthcare providers should consider individualizing PERT dosing based on nutritional status and response to therapy, ensuring regular follow-up with patients for dose titrations with consideration that most guidelines are framed as initial doses rather than upper limits.

Racial and Ethnic Cardiometabolic Risk Disparities in the Type 1 Diabetes Exchange Clinic Registry Cohort.

OBJECTIVE: To determine whether individuals from a historically underrepresented racial group have a higher cardiometabolic risk than historically represented individuals with type 1 diabetes (T1D) considering socioeconomic deprivation. METHODS: We used the multivariable logistic and linear regression models to examine socioeconomic deprivation (upper 10th percentile) by race/ethnicity interaction for each cardiometabolic risk factor and cardiometabolic risk burden score, respectively, across 6320 zip code tabulation areas. We also determined the age-adjusted prevalence of low, moderate, and high cardiometabolic risks defined as 0, 1 to 2, and 3 or more risk factors for hypertension, obesity, dyslipidemia, and off-target glycemia for non-Hispanic White (n = 15 746), non-Hispanic Black (n = 1019), Hispanic (n = 1115), and other (n = 887), respectively. RESULTS: The sample comprised 18 767 adolescents and adults with T1D. Those identifying as non-Hispanic Black were more likely to have a high cardiometabolic risk profile, including a 4.5-fold increase in the odds of off-target glycemia, a twofold increase in the odds of systolic hypertension, and 0.29 (unadjusted) and 0.46 (adjusted) increases in a higher cardiometabolic risk burden compared with non-Hispanic White individuals (P < .01). Those identifying as Hispanic had a 3.4-fold increase in the odds of off-target glycemia but were less likely to be overweight/obese or have systolic hypertension compared with non-Hispanic White. However, the lower likelihood of overweight/obesity and hypertension did not persist after considering covariates. CONCLUSION: There is a need to investigate additional determinants of racially/ethnically underrepresented cardiometabolic health, including structural racism and implicit bias in cardiometabolic care for individuals with T1D.

Equity in the Provision of Diabetes Self-Management Education and Support.

Diabetes self-management education and support (DSMES) interventions must be accessible to all people with diabetes. To address equity in the delivery of DSMES, interventions should consider the unique needs of various populations. This article outlines the needs of a wide range of populations, including people with diabetes who are racially or ethnically diverse; have limited English proficiency or literacy; are deaf or hard of hearing; are blind or have low vision; are neurodiverse; live with learning disabilities or intellectual or developmental disabilities; have dementia or cognitive impairment; or are of sexual and/or gender minority. The authors discuss how best to tailor DSMES to meet the needs of these diverse groups.

Financial Barriers in Emerging Adults With Type 1 Diabetes: A Qualitative Analysis.

Background: Emerging adulthood is a period fraught with challenging life transitions for many and is especially difficult for individuals with type 1 diabetes, as they encounter more obstacles to independently managing their diabetes. We examined the barriers faced by emerging adults and parents of emerging adults with type 1 diabetes and the impact these barriers had on their lives. Methods: Emerging adults and parents of emerging adults with type 1 diabetes were recruited from primary care and specialty clinics and via social media posts. In the parent study, semi-structured interviews were conducted to understand what supported and did not support diabetes self-management. Interviews were transcribed, coded, and analyzed for common themes. This sub-analysis analyzed data related to financial challenges in accessing diabetes management equipment and supplies. Results: This study included emerging adults with type 1 diabetes (n = 33; mean age 20 ± 2.9 years) and parents of emerging adults with type 1 diabetes (n = 17; mean age 47.5 ± 6.9 years). The majority of emerging adults used an insulin pump and continuous glucose monitoring system (n = 24 [73%]). Four main themes emerged related to access to care: 1) affordability of diabetes management tools, 2) managing insurance, 3) communication with pharmacies and health care providers, and 4) emotional consequences of financial stress. Conclusion: The current health system is challenging for emerging adults with type 1 diabetes and parents and is causing substantial emotional and financial stress. Future research is needed to address interventions for helping emerging adults and their parents navigate the cost of living with diabetes.

Financial stress in emerging adults with type 1 diabetes in the United States.

OBJECTIVE: To describe the relationships among financial stress factors (perceived stress, financial stress, and financial independence) and psychological factors (depressive symptoms, trait anxiety, and diabetes distress) on self-management outcomes (HbA1c and diabetes-related quality of life) in emerging adults with type 1 diabetes. RESEARCH DESIGN AND METHODS: A descriptive, correlational, cross-sectional study examined 413 emerging adults, ages 18-25, from the Type 1 Diabetes Exchange Clinic Registry. Data were collected via REDCap surveys using the Personal Financial Well-Being Scale, Willingness to Pay Scale, Financial Independence Visual Analog Scale, Center for Epidemiological Studies-Depression Inventory, State-Trait Anxiety Inventory, The Type 1 Diabetes Distress Scale, and Diabetes Quality of Life Measure. Hierarchical Multiple Regression analyses explored significant barriers to self-management outcomes. RESULTS: Hierarchical Multiple Regression analyses revealed that 20.6% of variance in HbA1c (F = 15.555, p < 0.001) was explained by greater financial stress (ß = -0.197, p < 0.001), willingness to pay (ß = -0.220, p < 0.001), disease duration (ß = 0.119, p = 0.014), and diabetes distress (ß = 0.181, p < 0.001); 64.5% of the variance in diabetes-related quality of life (F = 148.469, p < 0.001) was significantly explained by greater financial stress (ß = -0.112, p = 0.002), diabetes distress (ß = 0.512, p < 0.001), trait anxiety (ß = 0.183, p = 0.001) and depressive symptoms (ß = 0.162, p = 0.001). CONCLUSIONS: Greater financial stress and psychological factors have detrimental impacts on self-management outcomes during emerging adulthood. Diabetes providers need to identify and address these factors in routine care and advocate for policy changes to support improved self-management outcomes.

Self-Efficacy and Diabetes Self-Management in Middle-Aged and Older Adults in the United States: A Systematic Review.

OBJECTIVE | This study aimed to systematically review the existing literature on the relationship between self-efficacy and diabetes self-management in middle-aged and older adults in the United States and to determine whether the relationship applies across race and ethnicity. METHODS | Study selection followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses method. Studies published between 1990 to 2018 that investigated self-efficacy and diabetes self-management in middle-aged and older adults were searched using eight search engines: PsycINFO, CINAHL, SocIndex, AgeLine, MedLine, Social Science Citation Index, Cochrane Library, and Academic Search Complete. Only quantitative studies were included. RESULTS | Eleven studies met the inclusion criteria. Ten studies found significant association between self-efficacy and at least one self-management behavior, which included exercise, healthy diet, adherence to medication, blood glucose testing, and foot care. Findings were mixed regarding the role of self-efficacy in exercise and medication adherence. Higher self-efficacy in Mexican Americans predicted better self-management behaviors, whereas no relationship between self-efficacy and diabetes self-management was found in a sample of Black and White participants. The methodological quality of the studies was assessed. In general, the included studies demonstrated moderate methodological quality. Their limitations included inconsistency in the self-efficacy measures, a lack of longitudinal studies, and confounding bias. CONCLUSION | Self-efficacy has significant effects on self-management in middle-aged and older adults, but the effects may differ by race. Efforts to improve self-efficacy and deliver culturally appropriate services could potentially promote self-management behaviors in middle-aged and older adults with diabetes.

Maternal Stress and Mental Health Prior to Their Technology-Dependent Infant's Discharge Home From the NICU.

Mothers of infants in the neonatal intensive care unit (NICU) face stressors including turbulent emotions from their pregnancy/unexpected preterm delivery and their infant's unpredictable health status. The study purpose was to examine the psychological state of mothers prior to the discharge of their technology-dependent infants (eg, feeding tubes, supplemental oxygen) from the NICU to home. The study sample consisted of mothers (N = 19) of infants dependent on medical technology being discharged from a large Midwest NICU. A descriptive, correlational design using convenience sampling was employed to recruit mothers to examine associations of infant and maternal factors, resourcefulness, and stress with psychological state (depressive symptoms, posttraumatic stress symptoms). Forty-two percent of mothers were at high risk for clinical depression, with 37% in the clinical range for posttraumatic stress disorder. Increased maternal depressive symptoms were significantly associated with the increased frequency and perceived difficulty of their stress and posttraumatic stress symptoms. Increased posttraumatic stress symptoms were significantly associated solely with elevated depressive symptoms. This study identified factors associated with the mothers' increased psychological distress, providing beginning evidence for future interventions to employ prior to their technology-dependent infant's NICU discharge.

Mothers' Voices Related to Caregiving: The Transition of a Technology-Dependent Infant from the NICU to Home.

PURPOSE: The transition from the NICU to home is a complicated, challenging process for mothers of infants dependent on lifesaving medical technology, such as feeding tubes, supplemental oxygen, tracheostomies, and mechanical ventilation. The study purpose was to explore how these mothers perceive their transition experiences just prior to and during the first three months after initial NICU discharge. DESIGN: A qualitative, descriptive, longitudinal design was employed. SAMPLE: Nineteen mothers of infants dependent on lifesaving technology were recruited from a large Midwest NICU. MAIN OUTCOME VARIABLE: Description of mothers' transition experience. RESULTS: Three themes were identified pretransition: negative emotions, positive cognitive-behavioral efforts, and preparation for life at home. Two posttransition themes were negative and positive transition experiences. Throughout the transition, the mothers expressed heightened anxiety, fear, and stress about life-threatening situations that did not abate over time despite the discharge education received.

Maternal Perspectives of Well Siblings' Adjustment to Family Life With a Technology-Dependent Child.

Technology-dependent (TD) children require complex care and are dependent on medical technology. Approximately 75% of families, in the United States, who are caring for a TD child, also care for a well child. Well siblings are likely to be affected by the experience of living with a TD sibling as the process of family normalization is described as a family affair. The experiences of well siblings are not well described. The purpose of this qualitative analysis was to describe the experiences of well siblings who are living in a family with a TD child. Mothers were interviewed about the experiences of their well children and were digitally audio recorded. The interviews were transcribed, and content analysis was conducted. Content analysis from the interviews revealed the major themes of well sibling adjustment within the family unit, upside (altruistic, prosocial behaviors) and downside (negative internal and external processing behaviors). These results can be applied to advance the delivery of family nursing care offered to these families.

Journaling as reinforcement for the resourcefulness training intervention in mothers of technology-dependent children.

Resourcefulness, a set of cognitive and behavioral skills used to attain, maintain, or regain health, is a factor related to depressive symptoms in mothers of children with chronic conditions and complex care needs who are dependent on medical technology such as mechanical ventilation or feeding tubes. The purpose of this secondary analysis of a randomized, controlled pilot intervention study was to determine the feasibility, acceptability and fidelity of daily journal writing as a method of reinforcement of resourcefulness training (RT) that teaches the use of social and personal resourcefulness skills. Participants returned their journals to the study office at the end of the four-week journaling exercise. Content analysis from exit interviews and journals supported the feasibility, acceptability and fidelity of daily journaling for reinforcement of RT in this population. Journal writing can be used by pediatric nurses to reinforce and promote resourcefulness skill use in parents of technology-dependent children.

Redesigning Diabetes Care for Treatment Inertia: A Population Health Model.

In the past 2 decades, health care has witnessed technological and pharmacological advancements leading to innovations in diabetes management. Despite these advances, published guidelines, and treatment algorithms, most people with diabetes remain above glycemic targets. Thus, the authors designed a novel care model aimed at improving several causative factors, including therapeutic inertia, limited access to endocrinology and cardiovascular specialists, time constraints, and complexity in incorporating clinical practice guidelines. The model involves collaboration between the diabetes specialty team and primary care providers (PCPs). The intervention reviewed uncontrolled diabetes data and the patient's electronic medical record (EMR) and sent personalized, evidence-based recommendations to the provider using the task function in the EMR. Other services (eg, diabetes education) were utilized to optimize patient care to achieve optimal glycemic targets and address cardiometabolic risk. The overall mean hemoglobin A1c (HbA1c) decreased pre-post intervention by almost 1%, and 52.1% (347 of 666) of the cohort had ≥-0.5% change in HbA1c post-intervention. All pathways exhibited a decrease in HbA1c. Team-based approaches to managing diabetes patient care were the most effective. The interventions effectively utilized the resources across the health system without placing additional load or burden on primary care or diabetes specialty care teams. In the future, the authors hope to address the limitations of the current gap caused by increasing diabetes numbers, decreasing availability of PCPs and endocrinologists, and fee-for-service models using the innovative specialty consultant-primary care connection and knowledge exchange offered by this novel model, which can only be sustained with payer's support.

Empowering emerging adults with type 1 diabetes: crafting a financial and health insurance toolkit through community-based participatory action research.

BACKGROUND: Emerging adults aged 18-30 years face challenges during life transitions, with an added burden of navigating the health care system and additional costs associated with diabetes. This stress is compounded by overall low levels of health insurance literacy in this population, as people may not know about available financial and health care resources to minimize suboptimal diabetes outcomes. This study aimed to tailor a financial and health insurance toolkit to emerging adults with type 1 diabetes, including racially, ethnically diverse, and Medicaid-insured individuals, through community-based participatory action research. METHODS: An academic research team and community members from a national organization held six online community advisory board (CAB) content-creation meetings to understand how to tailor a financial and health insurance Toolkit. The CAB was comprised of six racially and insurance-diverse emerging adults with type 1 diabetes and four content experts (clinical, financial, and insurance). Six 60-minute online CAB meetings were held via University Hospitals (UH)-encrypted Zoom over five months. Pre-reading materials were emailed to CAB members before the meetings. A moderator established the purpose of each meeting and briefly discussed meeting rules before each meeting commenced. During the meetings, the moderator guided the discussions and provided the CAB members opportunities to respond and build on one another's feedback. A deductive thematic qualitative analysis was utilized. Three researchers independently coded the cross-referenced and de-identified CAB meeting transcripts and then convened to reach a group consensus. Two CAB members performed member-checking. RESULTS: The following key themes emerged to tailor the Toolkit: ensuring that content covers empowerment and self-advocacy, including genuine stories and multimedia visuals for aesthetics, addressing clinician bias, acknowledging racial and ethnic disparities in care, incorporating cultural representation, and demystifying Medicaid stigma. CONCLUSIONS: By successfully partnering with the CAB and a community organization through a community-based participatory action research approach, we will develop a financial and health insurance Toolkit tailored to the needs of racially and ethnically diverse and Medicaid-insured emerging adults with type 1 diabetes.

AIM OF THE RESEARCH: This study aims to tailor a financial and health insurance Toolkit to emerging adults, ages 18­30, with type 1 diabetes. Including the insight from racially and ethnically diverse and Medicaid-insured individuals in developing the Toolkit is essential. BACKGROUND TO THE RESEARCH: Emerging adults with type 1 diabetes have stressful challenges such as navigating the healthcare system, the costs of diabetes, and general diabetes self-management. This stress is worsened by low levels of health insurance literacy and leads to suboptimal diabetes outcomes. This issue affects many individuals but dramatically impacts those who are racially and ethnically diverse or Medicaid-insured. DESIGN AND METHODS USED: Six online content-creation meetings were held to understand the Toolkit content needs and preferences. We analyzed the meeting transcripts to uncover common themes. Patient and public involvement: An academic research team, a national organization (The Diabetes Link), and a Community Advisory Board (CAB) partnered together. The CAB members were racially and insurance-diverse emerging adults with type 1 diabetes and content (financial, insurance, clinical diabetes) experts. We will continue to collaborate with the CAB members to develop a research protocol to test the effects of the Toolkit. DISSEMINATION: The research findings will be shared with young adult type 1 diabetes stakeholders, healthcare providers, and community and professional organizations. Dissemination strategies will include publications, community and scientific conference presentations, community events, and social media resources and content. The finalized Toolkit will be publicly available on the Diabetes Link Resource Hub.

Consensus Recommendations for the Use of Automated Insulin Delivery Technologies in Clinical Practice.

The significant and growing global prevalence of diabetes continues to challenge people with diabetes (PwD), healthcare providers, and payers. While maintaining near-normal glucose levels has been shown to prevent or delay the progression of the long-term complications of diabetes, a significant proportion of PwD are not attaining their glycemic goals. During the past 6 years, we have seen tremendous advances in automated insulin delivery (AID) technologies. Numerous randomized controlled trials and real-world studies have shown that the use of AID systems is safe and effective in helping PwD achieve their long-term glycemic goals while reducing hypoglycemia risk. Thus, AID systems have recently become an integral part of diabetes management. However, recommendations for using AID systems in clinical settings have been lacking. Such guided recommendations are critical for AID success and acceptance. All clinicians working with PwD need to become familiar with the available systems in order to eliminate disparities in diabetes quality of care. This report provides much-needed guidance for clinicians who are interested in utilizing AIDs and presents a comprehensive listing of the evidence payers should consider when determining eligibility criteria for AID insurance coverage.

The Feasibility and Acceptability of a Community-Developed Health Insurance and Financial Toolkit for Emerging Adults With Type 1 Diabetes.

PURPOSE: The purpose of the study was to assess the feasibility and acceptability of a financial stress and health insurance education toolkit developed by a community advisory board for emerging adults, ages 18 to 25, with type 1 diabetes. METHODS: This study is a longitudinal, randomized controlled trial that enrolled 39 emerging adults with type 1 diabetes. Participants randomized to the intervention group were given access to the T1D Financial Toolkit, an online financial and health insurance education toolkit, over 30 days. For the present analysis, feasibility was assessed by enrollment and attrition. Optional, qualitative interviews were conducted upon the conclusion of the intervention to evaluate feasibility, acceptability, satisfaction, and key recommendations for improvement. RESULTS: Of the 39 participants who enrolled, 36 completed the study. The intervention period had 100% completion in both the control and intervention groups. Eleven participants from the intervention group completed interviews. Participants described few challenges accessing the toolkit and were highly satisfied with the intervention aesthetics, display, and content. Key recommendations included integrating more applied problem-solving into the experience of watching the videos. CONCLUSIONS: The T1D Financial Toolkit is a financial and health insurance education intervention tailored to emerging adults with type 1 diabetes. This resource is feasible, acceptable, and satisfactory. Diabetes care and education specialists can utilize this tool in practice to provide relevant, developmentally tailored education to emerging adults with type 1 diabetes, prompt applied problem-solving, reduce barriers to self-management, and improve psychosocial outcomes.

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

BACKGROUND: Individuals 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. OBJECTIVE: This study aimed to explore crowdfunding campaign requests to purchase insulin in the United States. METHODS: In 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. RESULTS: The 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). CONCLUSIONS: Despite 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.

A New Taxonomy for Technology-Enabled Diabetes Self-Management Interventions: Results of an Umbrella Review.

BACKGROUND: A 2017 umbrella review defined the technology-enabled self-management (TES) feedback loop associated with a significant reduction in A1C. The purpose of this 2021 review was to develop a taxonomy of intervention attributes in technology-enabled interventions; review recent, high-quality systematic reviews and meta-analyses to determine if the TES framework was described and if elements contribute to improved diabetes outcomes; and to identify gaps in the literature. METHODS: We identified key technology attributes needed to describe the active ingredients of TES interventions. We searched multiple databases for English language reviews published between April 2017 and April 2020, focused on PwD (population) receiving diabetes care and education (intervention) using technology-enabled self-management (comparator) in a randomized controlled trial, that impact glycemic, behavioral/psychosocial, and other diabetes self-management outcomes. AMSTAR-2 guidelines were used to assess 50 studies for methodological quality including risk of bias. RESULTS: The TES Taxonomy was developed to standardize the description of technology-enabled interventions; and ensure research uses the taxonomy for replication and evaluation. Of the 26 included reviews, most evaluated smartphones, mobile applications, texting, internet, and telehealth. Twenty-one meta-analyses with the TES feedback loop significantly lowered A1C. CONCLUSIONS: Technology-enabled diabetes self-management interventions continue to be associated with improved clinical outcomes. The ongoing rapid adoption and engagement of technology makes it important to focus on uniform measures for behavioral/psychosocial outcomes to highlight healthy coping. Using the TES Taxonomy as a standard approach to describe technology-enabled interventions will support understanding of the impact technology has on diabetes outcomes.