Purpose: The COVID-19 pandemic has contributed to financial and psychosocial stressors, particularly among individuals from minoritized groups. The goal of the current study was to provide a description of the financial and emotional burdens experienced by Black youth with T1D and their parents during the pandemic. Method: Data for the present study were obtained from a subset of families participating in a clinical trial providing an eHealth intervention to parents of Black adolescents with T1D. Adolescents (n = 63), young adults (n = 9), and their parents (n = 65) completed questionnaires on their experiences with emotional, social, and financial stressors during the pandemic. Results: Parents reported changes in occupational and financial stress during the pandemic. Nearly half (45.2%) reported reduced work hours, involuntary job loss, or voluntary job loss to care for a family member. A third (31.2%) reported significant changes in household income, with 10.9% of parents indicating that they were unable to meet their basic needs, such as paying bills. Many (50%) parents reported that their child missed a diabetes-related appointment; of these, 59.4% reported missing an appointment for a pandemic-related reason (e.g. clinic was closed due to COVID; family canceled appointment to avoid being around other people). Adolescents and young adults reported a variety of emotional responses to the pandemic, including moderate to extreme stress (46%), anger (28%), and anxiety (36%). Discussion: Families of Black youth with T1D experienced financial and emotional burden during the pandemic. Many also experienced disruptions in their diabetes care, as evidenced by missed appointments. Future studies should explore the relationship between these burdens and subsequent diabetes management. Disclosure K.R.Howard: Stock/Shareholder; Abbott, AbbVie Inc. M.Feldman: None. A.I.Carcone: None. K.P.Garza: None. M.A.Evans: None. J.Weissberg-benchell: Advisory Panel; Beta Bionics, Inc., Research Support; Beta Bionics, Inc. D.A.Ellis: None. Funding National Institutes of Health (3RO1DK110075-04S1)
Purpose: A diagnosis of T1D is often associated with increased youth and parental distress as families learn to manage complex daily diabetes tasks and navigate glycemic fluctuations. This study sought to capture the early experiences of families following initial diagnosis, specifically focusing on its psychosocial impact. Method: Eight children (8-12; M=9.0; SD=1.3), 12 teenagers (13-17; M=14.7; SD=1.9) with T1D and 31 parents of youth ages 3-17 diagnosed with T1D were surveyed two weeks following diagnosis as part of a larger pilot of a prevention intervention to support families during the first-year post diagnosis. Additionally, electronic medical records were reviewed 3 months post diagnosis to evaluate health care utilization and medical outcomes. Results: Two weeks post T1D diagnosis, some parents (38.7%) and youth (18.8%) reported elevated symptoms of depression. Similarly, 36.7% of parents and 12.5% of youth reported elevated symptoms of anxiety. Fewer youth (11.8%) and parents (11.1%) endorsed elevated diabetes distress at two weeks post-diagnosis. At 3 months, mean A1c was 7.5% (SD = 1.4) and mean time in range was 67% (SD = 21.8). No baseline variables were correlated with A1c at 3 months post-diagnosis; however, youth report of family conflict was negatively correlated with time in range (r = -.761; p <.01). At 3 months following diagnosis, nearly all (92.6%) youth were using CGM, while few (7.7%) were using insulin pumps. Discussion: This study examined the experiences of youth and their parents following a T1D diagnosis, along with 3-month post diagnosis clinical outcomes. Many parents experience elevated symptoms of depression and anxiety two weeks following diagnosis. Few baseline variables correlated with clinical outcomes at three months following diagnosis. Future studies should examine family experiences in the first year following diagnosis, as well as interventions that promote positive coping among youth and their parents. Disclosure K.R.Howard: Stock/Shareholder; Abbott, AbbVie Inc. N.W.Smith: None. K.P.Garza: None. J.Weissberg-benchell: Advisory Panel; Beta Bionics, Inc., Research Support; Beta Bionics, Inc. M.Feldman: None. Funding JDRF (2-SRA-2020-985-S-B)
The Insulin-only Bionic Pancreas (BP) Pivotal Trial compared the BP initialized only with body weight vs. standard-of-care (SC) . The BP autonomously determines all insulin doses. Meals are announced without carbohydrate counting. For adults aged 19-75 the mean adjusted difference of HbA1c at 13 weeks between BP and SC was -0.5% (95% CI: -0.6, -0.3, P<0.001) ; percent of time <54 mg/dl was not different between groups. Focus groups were conducted among BP users at the trial’s end. Adults reported improved time in range and A1c. Many reported it corrected highs well; others felt it took too long. Some experienced fewer lows; others reported more, stating the algorithm was too aggressive in correcting highs. Concerns were raised about the inability to prevent lows even when predicted. Many experienced improved glycemia at night, improved sleep and waking up in target range; some found night-time lows negatively impacted sleep. Many reported difficulties suspending insulin to prevent lows, leading to less exercise during the trial. Meal announcements were appreciated, with increased freedom to eat without guilt, but most wished for snack announcements. Some found challenges managing high-fat foods and not having an extended bolus. Many reported decreased emotional, cognitive and management burden with less worry, guilt, and burnout due to increased TIR and no need to carbohydrate count. Some found increased burden due to increased lows, and increased time filling cartridges and changing infusion sites. Some trusted the BP immediately, felt it learned their body quickly, and appreciated the automation. Others found waiting for corrections intolerable, engaging in either over-treating lows or administering external insulin for highs. Not knowing insulin-on-board was difficult for some. System-specific concerns included: cartridge capacity, short tubing, no clip, poor back-lighting, the screen timing out quickly, and not being waterproof. Gathering patient perspectives offers insights into learning and using the BP as well as the psychosocial impact of the BP which can be used to guide future innovations. Disclosure K. P. Garza: None. K. R. Howard: None. J. Weissberg-benchell: None. M. Feldman: None. Bionic pancreas group: n/a. Funding National Institute of Diabetes Digestive and Kidney Disease (#1UC4DK108612-01)
A diagnosis of T1D can be overwhelming. Offering psychosocial support throughout the first year may facilitate family adjustment. To our knowledge, no interventions exist that promote psychosocial adjustment in families immediately following diagnosis. Family-based interventions are rarely developed with a focus on the experiences of the families who have lived through the diagnosis. This study offers a novel approach to developing a family-based intervention for youth with T1D, with content developed from the lived experiences of youth and their parents. The goal of Teaming up for T1D with Telehealth (Triple T) is to support families post-diagnosis, combining brief, targeted telehealth sessions and access to a video library depicting common family experiences during the first year. We conducted age specific focus groups to explore challenges, fears, successes, and advice of youth and their families, diagnosed within the past 2 years. Children (8-12 years; n= 10) ; teens (13-17 years; n= 11) ; their caregivers (n= 27) and parents of children 7 or younger (n= 12) participated. Main themes were sorted into topics to be addressed by telehealth visits or videos. These themes informed the development of 20 videos with age-specific themes. There were five main topics: Reassurance that they will be “Okay”; Strategies for getting to “Okay”; Managing activities; Handling disclosure and questions; and Family teamwork. Test videos were reviewed by the original focus group participants for additional stakeholder feedback. Final videos were filmed with professional actors to be used in conjunction with telehealth sessions during the intervention. Using stakeholder experience in addition to clinical experience and empirical research to inform interventions represents a novel approach to developing interventions that may directly address the needs of families and inform future interventions and education following a T1D diagnosis. Disclosure K.P.Garza: None. K.R.Howard: None. J.Weissberg-benchell: None. M.Feldman: None. Funding Juvenile Diabetes Research Foundation
The Insulin-only Bionic Pancreas (BP) Pivotal Trial compared the BP initialized only with body weight vs. standard-of-care (SC) . The BP autonomously determines all insulin doses. Meals are announced without carbohydrate counting. For youth aged 6-17 the mean adjusted difference of HbA1c at 13 weeks between BP and SC was -0.5% (95% CI: -0.7, -0.2, P<0.001) : percent of time <54 mg/dl was not different between groups. Focus groups with youth who used the BP and their parents were conducted at the trial’s end. Youth reported positive experiences: improved A1c, increased independence, less parent worry and texting about glucose, less family diabetes conversations, less cognitive and emotional burden, less time managing diabetes, less worries about nighttime lows, more sleep, easier mealtimes, and easier school management. Children felt parents trusted them more and parents spent less time managing glucose at night. Some reported increased lows and others less. Some found challenges with exercise while others found it managed exercise well. Some found the BP took too long to learn their body and to correct high glucose. Concerns included: not having a snack announcement, site change frequency, small insulin capacity, lack of insulin-on-board information, poor backlighting, screen timing out too fast, and not having a clip or being waterproof. Parents reported positive experiences: pride in the child’s independence, less cognitive and emotional burden, less time managing diabetes, less diabetes conversations, and better school experiences. Most reported improved sleep and easier mealtimes. Some found challenges with exercise while others found it managed exercise well. Some found improved TIR and less lows while others found more lows or delays in correcting highs. Some found the system learned their child while others felt the system struggled. Parents were concerned that the low insulin warning did not go to parents’ phones. Youth and parent perspectives highlight experiences in learning and using the BP and offer insights related to multiple psychosocial domains which can guide future innovations. Disclosure K. R. Howard: None. K. P. Garza: None. M. Feldman: None. J. Weissberg-benchell: None. Bionic pancreas research group: n/a. Funding National Institute of Diabetes Digestive and Kidney Diseases (#1UC4DK108612-01)
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