Vision Voice: A Multimedia Exploration of Diabetes and Vision Loss in East Harlem.

BACKGROUND: East Harlem, New York, is a community actively struggling with diabetes and its complications, including vision-related conditions that can affect many aspects of daily life. OBJECTIVES: Vision Voice was a qualitative community-based participatory research (CBPR) study that intended to better understand the needs and experiences of people living with diabetes, other comorbid chronic illnesses, and vision loss in East Harlem. METHODS: Using photovoice methodology, four participants took photographs, convened to review their photographs, and determined overarching themes for the group's collective body of work. LESSONS LEARNED: Identified themes included effect of decreased vision function on personal independence/mobility and self-management of chronic conditions and the importance of informing community members and health care providers about these issues. The team next created a documentary film that further develops the narratives of the photovoice participants. CONCLUSIONS: The Vision Voice photovoice project was an effective tool to assess community needs, educate and raise awareness.

Quality-of-life measures in children and adults with type 1 diabetes: Juvenile Diabetes Research Foundation Continuous Glucose Monitoring randomized trial.

OBJECTIVE: To evaluate the impact of continuous glucose monitoring (CGM) on quality of life (QOL) among individuals with type 1 diabetes. RESEARCH DESIGN AND METHODS: In a multicenter trial, 451 children and adults with type 1 diabetes were randomly assigned to CGM treatment or the control group. Generic and diabetes-specific QOL questionnaires were completed at baseline and 26 weeks by all participants and parents of participants <18 years old, and the CGM satisfaction scale was completed by the CGM group (participants and parents) at 26 weeks. RESULTS: After 26 weeks, QOL scores remained largely unchanged for both the treatment and the control group, although there was a slight difference favoring the adult CGM group on several subscales (P < 0.05). There was substantial satisfaction with CGM technology after 26 weeks among participants and parents. CONCLUSIONS: Baseline QOL was high, and the measures showed little change with CGM use, although a high level of CGM satisfaction was reported.

Continuous glucose monitoring in youth with type 1 diabetes: 12-month follow-up of the Juvenile Diabetes Research Foundation continuous glucose monitoring randomized trial.

BACKGROUND: The use of continuous glucose monitoring (CGM) in the pediatric population is not well characterized. We have evaluated the use of CGM over a 12-month interval in youth with type 1 diabetes (TID) and have provided a description of CGM use. METHODS: Eighty subjects 8-17 years old with T1D and baseline hemoglobin A1c (HbA1c) >or=7.0% used CGM as part of a 6-month randomized trial and subsequent 6-month extension study. Outcomes included frequency of CGM use, HbA1c levels, rate of severe hypoglycemia, and a CGM satisfaction scale. RESULTS: Seventy-six (95%) of 80 subjects were using CGM after 6 months (median use = 5.5 days/week) compared with 67 (84%) after 12 months (median use = 4.0 days/week). The 17 subjects using CGM >or=6 days/week in month 12 had substantially greater improvement from baseline in HbA1c than did the 63 subjects using CGM <6 days/week in month 12 (mean change - 0.8 +/- 0.6% vs. +0.1 +/- 0.7%, P < 0.001). They also reported greater satisfaction with use of CGM (P = 0.001). The incidence of severe hypoglycemic events was low during the 12 months of the study irrespective of the amount of CGM use. CONCLUSIONS: In youth with T1D, frequency of use decreases over time. Individuals who use CGM on a near-daily basis can have substantial improvement in glycemic control.

Practical aspects of real-time continuous glucose monitors: the experience of the Yale Children's Diabetes Program.

Real-time continuous glucose monitoring (RT-CGM) provides new dimension to diabetes management. However, there are many challenges to using RT-CGM successfully. This article aims to present how RT-CGM is integrated into diabetes clinical practice at the Yale Children's Diabetes Program (YCDP). The authors provide factors to consider when choosing one of the commercially available RT-CGM systems and a discussion of key strategies for successful use of RT-CGM for families. Careful training and troubleshooting strategies will ensure the most positive experience possible for a family using RT-CGM.

Educating families on real time continuous glucose monitoring: the DirecNet navigator pilot study experience.

PURPOSE: The purpose of this article is to describe the process of educating families and children with type 1 diabetes on real time continuous glucose monitoring (RT-CGM) and to note the similarities and differences of training patients using continuous subcutaneous insulin infusion (CSII) versus multiple daily injections (MDI). METHODS: A total of 30 CSII participants and 27 MDI participants were educated using the Navigator RT-CGM in a clinical trial. Time spent with families for visits and calls was tracked and compared between patient groups. The Diabetes Research in Children Network (DirecNet) educators were surveyed to assess the most crucial, time intensive, and difficult educational concepts related to CGM. RESULTS: Of the 27 MDI families, an average of 9.6 hours was spent on protocol-prescribed visits and calls (not measured in CSII) and 2 hours on participant-initiated contacts over 3 months. MDI families required an average of 5.4 more phone contacts over 3 months than CSII families. According to the DirecNet educators, lag time and calibrations were the most crucial teaching concepts for successful RT-CGM use. The most time was spent on teaching technical aspects, troubleshooting, and insulin dosing. The most unanticipated difficulties were skin problems including irritation and the sensor not adhering well. CONCLUSION: Educators who teach RT-CGM should emphasize lag time and calibration techniques, technical device training, and sensor insertion. Follow-up focus should include insulin dosing adjustments and skin issues. The time and effort required to introduce RT-CGM provided an opportunity for the diabetes educators to reemphasize good diabetes care practices and promote self-awareness and autonomy to patients and families.

Determining content validity of a self-report instrument for adolescents using a heterogeneous expert panel.

BACKGROUND: The use of experiential experts, especially children and adolescents, in content validity evaluations of new instruments has not been described well. OBJECTIVE: To describe the use of experiential experts in a content validity evaluation of a new instrument. METHODS: Experiential (adolescents and parents, n = 11) and professional (diabetes clinicians and researchers, n = 17) expert judges evaluated the content validity of a new instrument that measures self-management of Type 1 diabetes in adolescents. The content validity index for each of 99 items (I-CVIs) for the total group of experts (n = 28; I-CVI-ALL) and for the experiential experts only (I-CVI-EXPERIENTIAL) were calculated, respectively, and both were used to inform decisions about whether to retain, eliminate, or revise each item. RESULTS: There were 20 items where the I-CVI-ALL was >/=.80 and the I-CVI-EXPERIENTIAL was <.80. Each of these 20 items was evaluated critically. Some were retained (n = 3), some were eliminated (n = 7), and some were revised as suggested by the experts (n = 10). DISCUSSION: Using experiential content validity experts (adolescents and parents) and critically evaluating their recommendations regarding items can result in further elimination and revision of items beyond what is suggested by content validity assessment done by professional experts. The result may be a more thorough content validity assessment of the instrument, leading to an instrument with greater relevance for the target population.