Financial stress in emerging adults with type 1 diabetes: a mini review integrating lessons from cancer research.

Amongst adults in the United States, those ages 18-30 have the highest unemployment rates, the lowest incomes, and are the most likely to be uninsured. Achieving financial independence is a core developmental task for this age group, but for those with type 1 diabetes (T1D), the high costs of insulin and diabetes supplies as well as an employment-based insurance model with minimal safety net can make this a formidable challenge. Cost-related non-adherence to diabetes management is particularly high in emerging adults with T1D and is associated with severe consequences, such as diabetic ketoacidosis (DKA) and even death. Objective financial burden and subjective financial distress related to illness are not unique to diabetes; in cancer care this construct is termed financial toxicity. Researchers have identified that emerging adults with cancer are particularly vulnerable to financial toxicity. Such research has helped inform models of care for cancer patients to mitigate cost-related stress. This mini review aims to briefly describe the state of the science on financial stress for emerging adults with T1D and explore parallels in cancer scholarship that can help guide future work in diabetes care to reduce health inequity, drive research forward, improve clinical care, and inform policy debates.

School Nurses' Comfort With Diabetes Management and Technology From 2012 to 2019.

Objective: School nurses are integral to optimizing diabetes management for students with type 1 diabetes. The aim of this study was to describe the use of diabetes technology in schools over time and assess school nurses' comfort level performing diabetes management tasks. Study design: From 2012 to 2019, school nurses who attended a diabetes education program completed a survey about their experience and comfort level with diabetes management. Results: A total of 1,796 school nurses completed the survey; 56% had at least 5 years of school nursing experience. Most (86%) had at least one student with type 1 diabetes. Among school nurses with at least one student with type 1 diabetes, 73% had at least one student using insulin pump therapy, and 48% had at least one student using continuous glucose monitoring (CGM). There was no change in pump use over time, but the percentage of nurses who had a student using CGM increased significantly from 24% in 2012 to 86% in 2019 (P <0.001). School nurses' comfort level using pumps remained stable over time. Overall, 47% reported being mostly/very comfortable giving boluses using a pump, and 17% reported being mostly/very comfortable troubleshooting problems with a pump. However, there was a significant increase in school nurses reporting feeling mostly/very comfortable working with CGM devices, increasing from 9% in 2012 to 44% in 2019 (P <0.001). Conclusion: School nurses are an important part of diabetes management for school-aged youth with type 1 diabetes. There is a need for additional diabetes education and support to build their confidence with diabetes management and technology, especially with further technological advancements in management.

"Fear That One Day I May Not Be Able to Afford Insulin": The Emotional Burden of Diabetes Costs During Emerging Adulthood.

Emerging adults (EAs) with type 1 diabetes (T1D) often experience challenges in diabetes management, in particular transitioning to financial independence. EAs 18-30 years of age with T1D completed online surveys about diabetes distress and an open-ended query about the most important worry among survey questions. Most of the 287 respondents (89.5%) endorsed "Agree" or "Somewhat agree" to the statement "I worry about the cost of diabetes." Responses did not differ by gender, age, diabetes duration, race/ethnicity, diabetes technology use, student status, income, or insurance status. However, a greater proportion of those not endorsing cost as a substantial burden achieved A1c <7% (92.9%) versus those who were neutral (46.2%) or who endorsed cost as a burden (50.6%) (P = 0.004). Furthermore, in open-ended responses, cost was the most frequently noted worry. Diabetes costs are a major concern for EAs, likely contributing to diabetes distress during this developmental stage, and clinicians should consider discussing diabetes costs with this population.

Diabetes Distress in Emerging Adulthood: Content Validity of the Problem Areas in Diabetes-Emerging Adult Version (PAID-EA) Using Qualitative Analysis.

PURPOSE: The purpose of this study was to explore the emotional work of diabetes during emerging adulthood and to explicate the validity of a newly developed measure of diabetes distress (DD) for use with emerging adults living with type 1 diabetes mellitus (T1DM), the Problem Areas in Diabetes-Emerging Adult version (PAID-EA). METHODS: Young people ages 18 to 30 with T1DM were recruited online to complete a cross-sectional survey including measures of DD, depressive symptomology, and the PAID-EA. To evaluate content validity, 2 open-ended questions asked what was the most significant emotion or worry discussed in the survey items and what feelings were missed in those items. Responses were analyzed using directed qualitative content analysis. RESULTS: A total of 254 (87%) participants responded to at least 1 of the 2 open-ended questions. Three themes and 1 subtheme were identified: (1) fear of the future with the subtheme of worry about the cost of diabetes, (2) acute worries about living with diabetes, and (3) challenges with finding support. More PAID-EA items corresponded with these themes than items on the original Problem Areas in Diabetes or Center for Epidemiologic Studies Depression Scale, supporting the validity of the PAID-EA and clarifying the developmental-stage-specific aspects of DD. CONCLUSIONS: Emerging adulthood is a period in which the future should hold infinite possibility, but young people with T1DM describe a staggering fear of the future with markedly limited possibilities, supporting the need to measure the developmental-stage-specific experience of DD as captured on the PAID-EA.

Assessing Diabetes Distress in Emerging Adults With Type 1 Diabetes: Development and Validation of the Problem Areas in Diabetes-Emerging Adult Version.

OBJECTIVES: Emerging adults (18 to 30 years of age) with type 1 diabetes experience suboptimal glycemic and psychological outcomes compared with other groups. The emotional burden of the unending self-care needs of diabetes management appears to be related to these poor health outcomes. However, there is no validated measure of this emotional burden in the developmental context of emerging adulthood. The primary aim of this study was to examine the psychometric properties of a new measure of diabetes distress in emerging adults with type 1 diabetes in the United States. METHODS: In this cross-sectional study, emerging adults with type 1 diabetes completed an online survey, including measures of diabetes distress, depressive symptomology and the newly developed measure, the Problem Areas in Diabetes-Emerging Adult version (PAID-EA). Participants also answered demographic and clinical outcomes questions. Internal consistency, reliability, construct validity and the underlying factor structure of the PAID-EA were assessed. RESULTS: Participants (N=287, 78% women) had a median age of 24 years, 43% were full-time students, 78% wore an insulin pump and 90% used a continuous glucose monitor. Mean self-reported glycated hemoglobin was 7.1%±1.2%. The PAID-EA demonstrated good internal consistency and reliability (Cronbach alpha=0.89), was composed of 1 component accounting for 29% of the observed variance and demonstrated construct validity as it was significantly correlated with known measures of similar constructs and with glycated hemoglobin levels (ρ=0.20, p=0.001). CONCLUSIONS: The PAID-EA holds promise as a reliable and valid measure of diabetes distress in emerging adults.

Concordance and discordance between youth and their parents' reports of diabetes distress: The importance of youth perceptions.

AIMS: The purpose of this study was to examine concordance and discordance between youth and parent reports of diabetes distress (DD) and their impact on glycemic control, diabetes-specific family conflict, and diabetes task responsibility. METHODS: Youth with type 1 diabetes ages 8-17 years (N = 120, 49% female) and their parents (84% mothers) completed surveys assessing DD, diabetes-specific family conflict, and family responsibility for diabetes tasks. Participants who scored below validated cut-points for DD were categorized as having low DD and above cut-points as elevated DD. Then youth/parent dyads were categorized as concordant when youth and parents both reported low DD or both reported elevated DD and discordant when one reported low DD and one reported elevated DD. RESULTS: About a quarter (26% of youth, 23% of parents) reported elevated DD; 10% of youth/parent dyads were concordant for elevated DD. However, many dyads (28%) reported discordantly (12.5% Youth Low/Parent Elevated, 16% Youth Elevated/Parent Low). A1c (p = .04) and youth-reported diabetes-specific family conflict (p = .04) were significantly higher in the Youth Elevated/Parent Low group than in the Youth Low/Parent Elevated group. CONCLUSIONS: DD can be experienced differently among youth and their parents. When this experience is discordant, youth perceptions may be important to consider.

Competing Demands of Young Adulthood and Diabetes: A Discussion of Major Life Changes and Strategies for Health Care Providers to Promote Successful Balance.

Young adults (YAs) are often faced with many new transitions and major milestones specific to their life stage. For YAs with diabetes, it can be particularly difficult to balance diabetes management with the age-typical demands of young adulthood. Clinicians can play an important role in helping YAs navigate major life changes and find balance in the competing demands of young adulthood, while protecting their health and well-being.

Engaging Social Media Influencers to Recruit Hard-to-Reach Populations.

BACKGROUND: Though clinical researchers have begun to use social media platforms to recruit participants, social media influencers are innovative community connectors to further expand recruitment reach, especially in hard-to-reach populations. OBJECTIVES: The purpose of this methods article is to provide a step-by-step guide for engaging social media influencers for virtual participant recruitment. METHODS: There are multiple steps for researchers to follow, including preplanning, institutional review board approval, engaging with influencers, the pitch, the post, and results dissemination. DISCUSSION: Engaging social media influencers to recruit for clinical research demonstrates great potential to increase access to hard-to-reach populations. Several methodological considerations remain, and this article shares both opportunities and challenges to guide researchers in this technique.

DNP scholarly projects: Unintended consequences for academic-practice partnerships.

With the rapid proliferation of Doctor of Nursing Practice (DNP) programs, academic-practice partnerships are critical in the implementation of rigorous and valuable scholarly projects. However, the failure to develop meaningful partnerships can have unintended consequences, particularly when students and practice sites do not have the preparation and support to navigate these partnerships. Four case studies are presented that explore the issues of preserving autonomy, practicing stewardship, imposing unfair burden and maintaining project fidelity. Best practices are presented to promote equitable collaboration and a mutually beneficial experience. Universities must have the resources required to generate expert clinicians able to translate research into practice and support effective academic-practice partnerships.

How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review.

PURPOSE OF REVIEW: Emerging adulthood (ages 18-29) presents many emotional, social, and developmental challenges that can contribute to an increased sense of burden when managing type 1 diabetes (T1D). Diabetes distress (DD) is the concept that captures the emotional burden, frustrations, and worries resulting from living with T1D. This integrative review sets out to examine the impact of developmental context by answering this question: How do the challenges of emerging adulthood inform our understanding of DD? RECENT FINDINGS: DD is highly prevalent in emerging adults and occurs at higher rates than in other age groups. Qualitative studies reveal that DD is embedded within the developmental challenges specific to living with T1D during this stage. Quantitative studies reveal the prevalence and correlates of DD in this age group, and qualitative studies augment these findings by capturing the scope and complexity of the emotional burden of living with T1D as an emerging adult.

Computerized Automated Reminder Diabetes System (CARDS): e-mail and SMS cell phone text messaging reminders to support diabetes management.

BACKGROUND: Cell phone text messaging, via the Short Messaging Service (SMS), offers the promise of a highly portable, well-accepted, and inexpensive modality for engaging youth and young adults in the management of their diabetes. This pilot and feasibility study compared two-way SMS cell phone messaging with e-mail reminders that were directed at encouraging blood glucose (BG) monitoring. METHODS: Forty insulin-treated adolescents and young adults with diabetes were randomized to receive electronic reminders to check their BG levels via cell phone text messaging or e-mail reminders for a 3-month pilot study. Electronic messages were automatically generated, and participant replies with BG results were processed by the locally developed Computerized Automated Reminder Diabetes System (CARDS). Participants set their schedule for reminders on the secure CARDS website where they could also enter and review BG data. RESULTS: Of the 40 participants, 22 were randomized to receive cell phone text message reminders and 18 to receive e-mail reminders; 18 in the cell phone group and 11 in the e-mail group used the system. Compared to the e-mail group, users in the cell phone group received more reminders (180.4 vs. 106.6 per user) and responded with BG results significantly more often (30.0 vs. 6.9 per user, P = 0.04). During the first month cell phone users submitted twice as many BGs as e-mail users (27.2 vs. 13.8 per user); by month 3, usage waned. CONCLUSIONS: Cell phone text messaging to promote BG monitoring is a viable and acceptable option in adolescents and young adults with diabetes. However, maintaining interest levels for prolonged intervals remains a challenge.

The DAILY (Daily Automated Intensive Log for Youth) trial: a wireless, portable system to improve adherence and glycemic control in youth with diabetes.

Blood glucose (BG) monitoring (BGM) is an important component of diabetes management. New wireless technologies may facilitate BGM and help to optimize glycemic control. We evaluated an integrated wireless approach with and without a motivational game in youth with diabetes. Forty youth, 8-18 years old, each received a handheld device fitted with a wireless modem and diabetes data management software, plus a wireless-enabled BG monitor. Half were randomized to receive the new technologies along with an integrated motivational game in which the participants would guess a BG level following collection of three earlier readings (Game Group). BG data, insulin doses, and carbohydrate intake were displayed graphically prior to the glucose estimation. The other group received the new technologies alone (Control Group). Both groups were instructed to perform BGM four times daily and transmit their data to a central server via the wireless modem. Feasibility of implementation and outcomes were ascertained after 4 weeks. Ninety-three percent of participants successfully transmitted their data wirelessly to the server. The Game Group transmitted significantly more glucose values than the Control Group (P < 0.001). The Game Group also had significantly less hyperglycemia (glucose >/=13.9 mmol/L or >/=250 mg/dL) than the Control Group (P < 0.001). Youth in the Game Group displayed a significant increase in diabetes knowledge over the 4-week trial (P < 0.005). Finally, there was a trend for more youth in the Game Group to maintain hemoglobin A1C values