Health-related quality of life in youth with type 1 diabetes: Associations with multiple comorbidities and mental health conditions.

AIM: This cross-sectional study examined the associations of comorbid conditions on health-related quality of life (HRQOL) in 601 youth with type 1 diabetes. We evaluated associations between number of comorbid conditions (0, 1, ≥2) and particular comorbid conditions and youth HRQOL by self-report and parent proxy-report. RESEARCH DESIGN AND METHODS: Youth with type 1 diabetes, aged 5-18 years, and their parents completed the PedsQL 4.0 Generic Core Scales self-report and parent proxy-report, respectively; they also reported youths' comorbid medical and mental health conditions. Separate linear regression models tested the relationship between number of comorbid conditions and specific comorbid conditions with youth-reported and parent proxy-reported HRQOL. RESULTS: Youth with ≥2 comorbid conditions had significantly lower HRQOL by both self- and parent proxy-reports compared with youth with 0 or 1 comorbid condition (youth self-report: 0: 85 ± 12, 1: 85 ± 13, 2+: 78 ± 16, p = <0.0001; parent proxy-report: 0: 83 ± 12, 1: 81 ± 13, 2+: 74 ± 15, p = <0.0001). Amongst the comorbid conditions, only a mental health comorbidity was associated with lower HRQOL. For youth and parent proxy-reports, both the number of comorbidities (≥2) and the presence of a mental health comorbidity were significantly associated with lower HRQOL. CONCLUSIONS: Health-related quality of life seems to be preserved in youth with type 1 diabetes unless confronted by multiple comorbidities as reported by youth and their parents. Our findings highlight the importance of tracking the presence of multiple comorbid conditions, possibly by reviewing problem and medication lists in the medical record, as well as screening for and addressing mental health conditions in routine diabetes care.

"I'm essentially his pancreas": Parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes.

BACKGROUND: Across all age groups, management of type 1 diabetes (T1D) places substantial responsibility and emotional burden upon families. This study explored parent perceptions of the burdens of caring for very young children with T1D. METHODS: Semi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1D, aged 1 to <8 years old, from four diverse pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes. RESULTS: Youth (77% White) had T1D for ≥6 months: age (M ± SD) 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, and A1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% used an insulin pump and 61% used CGM. Three major themes emerged related to diabetes burdens: (a) the emotional burden of diabetes on themselves and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to manage the child's diabetes, and (c) suggestions for how more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers could help reduce parent burden and worry. CONCLUSIONS: In families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents' confidence in themselves, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact child's glycemic control, as well as improve parent and child quality of life.

Technology to optimize pediatric diabetes management and outcomes.

Technology for diabetes management is rapidly developing and changing. With each new development, there are numerous factors to consider, including medical benefits, impact on quality of life, ease of use, and barriers to use. It is also important to consider the interaction between developmental stage and technology. This review considers a number of newer diabetes-related technologies and explores issues related to their use in the pediatric diabetes population (including young adults), with a focus on psychosocial factors. Areas include trend technology in blood glucose monitoring, continuous glucose monitoring, sensor-augmented insulin pumps and low glucose suspend functions, internet applications including videoconferencing, mobile applications (apps), text messaging, and online gaming.

Long-term Continuous Glucose Monitor Use in Very Young Children With Type 1 Diabetes: One-Year Results From the SENCE Study.

OBJECTIVES: Achieving optimal glycemic outcomes in young children with type 1 diabetes (T1D) is challenging. This study examined the durability of continuous glucose monitoring (CGM) coupled with a family behavioral intervention (FBI) to improve glycemia. STUDY DESIGN: This one-year study included an initial 26-week randomized controlled trial of CGM with FBI (CGM+FBI) and CGM alone (Standard-CGM) compared with blood glucose monitoring (BGM), followed by a 26-week extension phase wherein the BGM Group received the CGM+FBI (BGM-Crossover) and both original CGM groups continued this technology. RESULTS: Time in range (70-180 mg/dL) did not improve with CGM use (CGM+FBI: baseline 37%, 52 weeks 41%; Standard-CGM: baseline 41%, 52 weeks 44%; BGM-Crossover: 26 weeks 38%, 52 weeks 40%). All three groups sustained decreases in hypoglycemia (<70 mg/dL) with CGM use (CGM+FBI: baseline 3.4%, 52 weeks 2.0%; Standard-CGM: baseline 4.1%, 52 weeks 2.1%; BGM-Crossover: 26 weeks 4.5%, 52 weeks 1.7%, P-values <.001). Hemoglobin A1c was unchanged with CGM use (CGM+FBI: baseline 8.3%, 52 weeks 8.2%; Standard-CGM: baseline 8.2%, 52 weeks 8.0%; BGM-Crossover: 26 weeks 8.1%, 52 weeks 8.3%). Sensor use remained high (52-week study visit: CGM+FBI 91%, Standard-CGM 92%, BGM-Crossover 88%). CONCLUSION: Over 12 months young children with T1D using newer CGM technology sustained reductions in hypoglycemia and, in contrast to prior studies, persistently wore CGM. However, pervasive hyperglycemia remained unmitigated. This indicates an urgent need for further advances in diabetes technology, behavioral support, and diabetes management educational approaches to optimize glycemia in young children.

Associations of diabetes self-management characteristics, HbA1c, and psychosocial outcomes with depressive symptoms in a contemporary sample of adolescents with type 1 diabetes.

AIMS: We sought to examine the associations between diabetes self-management, HbA1c, and psychosocial outcomes with the frequency of depressive symptoms. METHODS: We surveyed 301 teens (50% male, 22% non-white), mean age of 15.0±1.3 years, diabetes duration of 6.5±3.7 years. Biomedical variables: daily frequency of blood glucose monitoring of 4.5±1.9, 63% insulin pump use, mean HbA1c 8.5±1.1% (69±12 mmol/mol); 15% of the sample achieved the target HbA1c of <7.5% (<58 mmol/mol). RESULTS: Nearly 1 in 5 (18%, n=54) adolescents reported significant depressive symptoms and, of those participants, slightly under half reported moderate/severe depressive symptoms. Teens with moderate/severe depressive symptoms (CES-D scores ≥24) were more likely to be female, have parents without a college education, and not utilize insulin pumps. Teens with more depressive symptoms reported higher diabetes family conflict, higher diabetes burden, and lower quality of life. In the group reporting no depressive symptoms (10%), scores on psychosocial variables and diabetes treatment variables were the most favorable. CONCLUSION: In our sample, the presence of depressive symptoms appears to relate to both diabetes treatment and quality of life. In addition, studying teens without depressive symptoms can help us learn more about protective factors that potentially buffer against depressive symptoms and that are associated with better outcomes.

Sources and Valence of Information Impacting Parents' Decisions to Use Diabetes Technologies in Young Children <8 Years Old with Type 1 Diabetes.

There are multiple information sources available to assist families in learning about rapidly advancing diabetes technologies as care options for their children. This study explored where and from whom families of young children with type 1 diabetes get information about diabetes technologies and the valence (positive vs. negative) of that information. Semi-structured interviews were conducted with parents (86% mothers) of 79 youth <8 years old with type 1 diabetes for ≥6 months, ([mean ± standard deviation] age 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, 77% white, A1c 63 ± 10 mmol/mol [7.9 ± 0.9%], 66% pump-treated, 58% using continuous glucose monitors [CGMs]). Interviews were transcribed and underwent content analysis to derive central themes. Most parents reported learning about new technologies from three direct sources: diabetes care providers, people with diabetes, and caregivers of children with diabetes. Parents also cited three indirect sources of information: online forums, publications, and diabetes-specific conferences. Parents reported hearing primarily positive things about technologies. Families not using pump and/or CGM noted reluctance to use technology due to family-specific concerns (e.g., cost, child's unwillingness to wear device) rather than information from outside sources. In this subset of parents, many still expressed willingness to initiate use once family-specific concerns were resolved. Parents of young children received largely positive information about diabetes technologies, primarily from health care providers and others familiar with using devices personally or for their children. To maximize diabetes technology use in young children, it is incumbent upon providers to ensure families receive balanced realistic information about benefits and barriers.

Benefits and Barriers of Continuous Glucose Monitoring in Young Children with Type 1 Diabetes.

Background: Continuous glucose monitoring (CGM) has potential to address challenges of type 1 diabetes (T1D) management for young children. CGM use is increasing, yet remains underutilized. Characterizing parents' experiences with CGM can inform clinical strategies to help parents make decisions about diabetes management, overcome obstacles to initiating and sustaining CGM use, and maximize benefits of CGM use in their children's diabetes care. Methods: Transcripts from semistructured qualitative interviews with 55 parents of children aged 1 to <8 years, with T1D duration ≥6 months, and whose child currently or previously used CGM were coded and analyzed to derive themes about their experiences with CGM. Results: Participants were 88% mothers and the mean child age was 5.0 ± 1.5 years. Parents described benefits of CGM use: decreased worry about glucose excursions, improved sleep, increased sense of safety with children who cannot recognize or express symptoms of hypo- or hyperglycemia, and greater comfort with other caregivers, especially using remote monitoring functionality when away from children. Challenges included painful insertions, wearing multiple devices on small bodies, disruptive alerts, data gaps due to lost signals, skin/adhesive problems, and difficulty interpreting the amount of information generated by CGM. For some, the challenges outweighed potential benefits and they stopped CGM use. Conclusions: CGM may address unique challenges of T1D in young children and increase parental comfort with diabetes management, yet there are multiple barriers to initiating or maintaining CGM use. Education and behavioral support to address these benefits and barriers may equip caregivers with skills to address challenges of CGM use.

Baseline Psychosocial Characteristics Predict Frequency of Continuous Glucose Monitoring in Youth with Type 1 Diabetes.

BACKGROUND: Consistent use of continuous glucose monitoring (CGM) has been associated with improved glycemic control in youth with type 1 diabetes (T1D). There are many barriers to device uptake and continued use. There is a need to understand patient-specific characteristics when considering CGM. We evaluated patterns of CGM use and associations between baseline psychosocial measures and frequency of CGM use over 1 year. METHODS: Youth with T1D (n = 120), ages 8-18 years, completed questionnaires at CGM initiation and after 6 and 12 months assessing depressive symptoms, diabetes burden, and diabetes-specific and generic quality of life (QOL). RESULTS: Youth (51% male and 95% white) had mean age 12.7 ± 2.7 years, diabetes duration 6.1 ± 3.6 years, and glycated hemoglobin (HbA1c) 8.0 ± 0.8%. Over 1 year, 35% of youth used CGM 6 to 7 days per week, 45% used CGM 3-5 days per week, and 20% used CGM only 0-2 days per week. Youth who used CGM 3-7 days per week over 12 months had lower HbA1c at months 9 and 12 than youth who used CGM 0-2 days per week (9 months: 7.9 ± 0.9% vs. 8.5 ± 1.1%, P = 0.006 and 12 months: 8.0 ± 0.9% vs. 8.5 ± 1.1%, P = 0.02). Those using CGM 0-2 days per week had greater endorsement of depressive symptoms and diabetes burden and reported lower QOL at baseline compared with those using CGM 3-7 days per week. CONCLUSIONS: CGM use for 3 or more days per week over 12 months had a protective effect on HbA1c. Providers should consider addressing psychosocial parameters when initiating CGM to maximize uptake and promote continued use in youth with T1D.

Management and Family Burdens Endorsed by Parents of Youth <7 Years Old With Type 1 Diabetes.

BACKGROUND: This study investigated unique burdens experienced by parents of young children with type 1 diabetes in the context of contemporary diabetes management. METHODS: Self-report surveys and medical record information from the T1D Exchange clinic registry were used. Parental burden and family impact scores were tabulated across demographic and clinical characteristics, overall and according to age group (<4, 4-<6, and 6-<7 years). RESULTS: The mean age of the 597 children was 5.2 ± 1.2 years (n = 111 <4 years, n = 291 4-<6 years, and n = 195 6-<7 years) and mean duration of diabetes was 2.4 ± 1.1 years. Mean hemoglobin A1c was 8.2% ± 1.1%. Approximately one-third (31%) reported their child was currently using CGM and over half (58%) reported using insulin pumps. The most frequently endorsed parent-reported burdens of diabetes were worrying about child having a low blood sugar (74%), about the future and possibility of serious complications (70%), and feeling upset when their child's diabetes management is "off track" (61%). Areas endorsed for negative family impact were diminished amount or quality of sleep for family members (59%) and need for flexible working arrangements to help care for their child (55%). CONCLUSIONS: Substantial burdens remain for parents of young children with type 1 diabetes, despite the availability of advanced technologies for diabetes management.