Joyce P. Yi-Frazier

Psychosocial Burden and Glycemic Control During the First 6 Years of Diabetes: Results From the SEARCH for Diabetes in Youth Study

PURPOSE To evaluate the psychosocial burden of adolescents with diabetes, determine the trajectory of psychosocial burden, and examine the interdependent relationships between psychosocial burden and glycemic control across the first 6 years of diabetes. METHODS Data from SEARCH for Diabetes in Youth, an observational study of U.S. children diagnosed with diabetes before the age of 20, were collected during study visits conducted at baseline and then at 12, 24, and 60 months after baseline. Blood was drawn, clinical and demographic information was collected, and psychosocial burden was evaluated using standardized depression and generic and diabetes-specific health-related quality of life (QOL) surveys. RESULTS Among the 1,307 adolescents (mean age, 14.1±2.5 years) with baseline data, 1,026 had type 1 diabetes and 281 had type 2 diabetes. For those with a 60-month follow-up visit, glycated hemoglobin (A1c) values rose 1.5% from baseline (type 1, 7.7%-9.3% and type 2, 7.3%-8.8%). Adolescents with type 2 diabetes reported more depression and poorer QOL than adolescents with type 1 diabetes. For each diabetes type, there were similar baseline risk factors for higher A1c values: longer diabetes duration, ethnic minority status, and declining diabetes QOL (p < .05). However, youth with type 2 diabetes had higher A1c values with increasing generic QOL, an unexpected finding. Younger adolescents with type 1 diabetes had higher A1c values at the end of the study. CONCLUSIONS Significant deterioration in glycemic control marks the first 6 years of diabetes for adolescents. Psychosocial burden, particularly poor diabetes-specific QOL, is a contributor to suboptimal glycemic outcomes.

Demographic and clinical correlates of diabetes-related quality of life among youth with type 1 diabetes.

OBJECTIVES To evaluate the reliability and cluster structure of the Pediatric Quality of Life Inventory Type 1 Diabetes Module 3.0 (PedsQL-T1DM) and associated subscales and to explore the associations between PedsQL-T1DM total score and demographic and clinical characteristics and clinical indicators among a large racially/ethnically diverse cohort of youth with type 1 diabetes. STUDY DESIGN Principal components analysis was conducted on responses from the PedsQL-T1DM child self-report forms completed by SEARCH for Diabetes in Youth study participants aged ≥ 5 years. Multivariate linear regression models were fit to examine the associations among PedsQL-T1DM total score, demographic and clinical characteristics, and clinical indicators. RESULTS The sample comprised 2602 youth with a mean age of 13.6 ± 4.1 years and a mean T1DM duration of 62.1 ± 47.0 months. Principal components analysis did not support the 5 existing PedsQL-T1DM subscales. In multivariate analyses, the PedsQL-T1DM total score was negatively and significantly associated with younger age (5-7 years), female sex, receiving insulin by injection (vs pump), having parents without a college degree, Medicaid/Medicare insurance, and having a comorbid medical condition. Youth with poor glycemic control based on their age-specific hemoglobin A1c target values and those with depressive symptoms had significantly lower PedsQL-T1DM scores than their counterparts with good control and no or limited depressive symptoms. CONCLUSION This study has identified sociodemographic and clinical characteristics of youth with T1DM more likely to experience poor diabetes-specific quality of life. The association of lower PedsQL-T1DM scores with depressive symptoms and poor glycemic control is especially concerning and may be the focus of future interventions and studies.

Identification of Minimal Clinically Important Difference Scores of the PedsQL in Children, Adolescents, and Young Adults With Type 1 and Type 2 Diabetes

OBJECTIVE To establish minimal clinically important difference (MCID) scores representing the smallest detectable change in quality of life (QOL), using the Pediatric Quality of Life Inventory (PedsQL) Generic Core and Diabetes Module among youth with diabetes and their parents, and to identify demographic and clinical correlates of QOL change over 1 year. RESEARCH DESIGN AND METHODS Participants in the SEARCH for Diabetes in Youth Study aged >5 years and parents of youth aged <18 years completed PedsQL surveys at their initial and 12-month study visits. MCIDs for each PedsQL module were calculated using one standard error of measurement. Demographic and clinical characteristics associated with QOL change were identified through multiple linear and logistic regression analyses. RESULTS The sample comprised 5,004 youth (mean age, 12.5 ± 4.7 years; mean diabetes duration, 3.4 ± 3.7 years). Of 100 possible points, PedsQL total score MCIDs for youth with type 1 and type 2 diabetes, respectively, were Generic Core, 4.88, 6.27 (parent) and 4.72, 5.41 (youth); Diabetes Module, 4.54, 6.06 (parent) and 5.27, 5.96 (youth). Among 1,402 youth with a follow-up visit, lower baseline QOL, male sex, private insurance, having type 1 diabetes, longer diabetes duration, and better glycemic control predicted improvements in youth- and parent-reported PedsQL total scores over 1 year. Clinically meaningful (≥1 MCID) improvements in total score for at least one PedsQL module were predicted by private insurance, lower BMI, and lower A1C at baseline. CONCLUSIONS These diabetes-specific reference points to interpret clinically meaningful change in PedsQL scores can be used in clinical care and research for youth with type 1 and type 2 diabetes.

Resilience and psychosocial outcomes in parents of children with cancer

The psychosocial function of parents of children with cancer can impact the well‐being of the entire family. Resilience resources are likely related to psychosocial outcomes and may be amenable to intervention. We hypothesized that parents with lower resources would report worse outcomes.

The association of personal resilience with stress, coping, and diabetes outcomes in adolescents with type 1 diabetes: Variable- and person-focused approaches

This study explored the association between personal resilience and distress, coping, and diabetes outcomes in 50 adolescents with type 1 diabetes. Resilience was defined by a factor score derived from validated instruments measuring self-efficacy, optimism, and self-esteem. Variable- and person-focused methodologies were used to explore these associations. Low resilience was associated with higher distress, poor quality of life, and poor glycemic control. Participants with low resilience used more maladaptive coping strategies and were at greatest risk of poor outcomes. Findings suggest that resilience is a promising candidate for interventions designed to reduce distress and improve outcomes for adolescents with type 1 diabetes.

Prevalence of and Disparities in Barriers to Care Experienced by Youth with Type 1 Diabetes

OBJECTIVE To describe the prevalence of access and process barriers to health care and to examine their relationship to sociodemographic and disease factors in a large and diverse cohort of US youth with type 1 diabetes. STUDY DESIGN A cross-sectional analysis of 780 youth who participated in the SEARCH for Diabetes in Youth Study and were diagnosed with type 1 diabetes in 2002-2005. Experience of barriers to care was collected from parent report on questionnaires. Analyses included multivariate regression models to predict the presence of specific barriers to care. RESULTS Overall, 81.7% of participants reported at least one barrier; the 3 most common were costs (47.5%), communication (43.0%), and getting needed information (48.4%). Problems with access to care, not having a regular provider, and receiving contextual care (care that takes into account personal and family context) were associated with poorer glycated hemoglobin levels. Adjusted multivariate models indicated that barriers related to access (regular provider, cost) were most likely for youth with low family income and those without public health insurance. Barriers associated with the processes of quality care (contextual care, communication) were more likely for Hispanic youth and those whose parents had less education. CONCLUSIONS This study indicates that a large proportion of youth with type 1 diabetes experience substantial barriers to care. Barriers to access and those associated with processes of quality care differed by sociodemographic characteristics. Future investigators should expand knowledge of the systemic processes that lead to disparate outcomes for some youth with diabetes and assess potential solutions.

Promoting Resilience in Stress Management: A Pilot Study of a Novel Resilience-Promoting Intervention for Adolescents and Young Adults With Serious Illness

OBJECTIVE To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer. METHODS PRISM consists of two long or four short skills-based modules. English-speaking patients 12-25 years old were eligible if they had T1D for >6 months or cancer for >2 weeks. Feasibility was defined as an 80% completion rate and high satisfaction. Ongoing monitoring shaped iterative refinement of disease-specific approach. RESULTS 12 of 15 patients with T1D (80%) completed the two-session intervention. 3 of 15 patients with cancer declined to complete the two-session version, citing prohibitive length of individual sessions. 12 (80%) completed the four-session version. Patient-reported satisfaction was high across groups. CONCLUSIONS The PRISM intervention is feasible and well-accepted by AYAs with cancer or T1D. Differences in patient populations warrant differences in approach.

Stress and A1c Among People with Diabetes Across the Lifespan.

Stress is known to negatively affect health and is a potentially serious barrier to diabetes-related health outcomes. This paper synthesizes what is known about stress and glycemic control among people with type 1 and type 2 diabetes across the lifespan. Chronic stress—especially in relation to living with diabetes—was most strongly associated with A1c, particularly among subgroups that face disproportionate stress, such as minority groups or adolescents/young adults. Mechanisms of the stress-A1c association include physiological, psychological, behavioral, and environmental links. Understanding the dimensions of stress as they relate to health in diabetes can be of significant clinical importance, and interventions targeting mechanisms that either exacerbate or buffer stress have reported modest improvements in A1c.

Self-detection remains a key method of breast cancer detection for U.S. women.

PURPOSE The method by which breast cancer is detected becomes a factor for long-term survival and should be considered in treatment plans. This report describes patient characteristics and time trends for various methods of breast cancer detection in the United States. METHODS The 2003 National Health Interview Survey (NHIS), a nationally representative self-report health survey, included 361 women survivors diagnosed with breast cancer between 1980 and 2003. Responses to the question, How was your breast cancer found? were categorized as accident, self-examination, physician during routine breast examination, mammogram, and other. We examined responses by income, race, age, and year of diagnosis. RESULTS Most women survivors (57%) reported a detection method other than mammographic examination. Women often detected breast cancers themselves, either by self-examination (25%) or by accident (18%). CONCLUSIONS Despite increased use of screening mammography, a large percentage of breast cancers are detected by the patients themselves. Patient-noted breast abnormalities should be carefully evaluated.

Using Instagram as a Modified Application of Photovoice for Storytelling and Sharing in Adolescents With Type 1 Diabetes

Photovoice is a research method developed to help communities share images as a tool for discussion of key issues. Although this may be useful to promote healthy behavior, using Photovoice in adolescents has been logistically challenging. Given adolescents’ engagement in social media, our study explored the feasibility of using a photo-sharing mobile phone application, Instagram, to accomplish the principles of Photovoice. Twenty adolescents 14 to 18 years old with type 1 diabetes were asked to use Instagram to post any diabetes-related photo for 3 weeks. Individual interviews and a focus group were also offered, and recruitment and retention statistics were tracked. Of those approached (n = 47), 43% agreed to participate. Twelve were actively engaged. Shared photos were most likely to fall into the categories of diabetes care, humor, or food. Engaged participants universally reported the project to be a positive experience; however, there were technological and personal factors to consider for widespread implementation.