The COVID-19 pandemic has resulted in widespread adoption of telemedicine for management of chronic conditions such as type 1 diabetes (T1D), but few data have been collected about the patient experience and perceived quality of care during this time. We surveyed members of the T1D Exchange patient registry and online community regarding their experiences with and opinions about telemedicine care during the pandemic. Among 2235 survey respondents, 65% had utilized telemedicine. The most common reasons for adopting telemedicine were providers not offering in-person care (66%), concerns about the health risks of in-person care (59%), providers offering (52%) or insurance covering (19%) telemedicine for the first time, and local or state orders to stay home (33%). Among telemedicine users, 62% felt video care was as effective as or more effective than in-person care, and 82% hoped to use telemedicine in the future. The most-cited reason for non-use of telemedicine was that providers were not offering it (49%). Our findings highlight the role of telemedicine in maintaining access to T1D care during the COVID-19 pandemic. Respondents’ satisfaction with telemedicine and interest in its continued use signifies the need for ongoing access to this care modality and for the development of telemedicine best practices within T1D care.
Background Despite efforts to increase participation of adolescents and young adults (AYAs; 15–39 years) in cancer clinical trials (CTs), enrollment remains very low. Even when provided access to CTs, AYAs are less likely to participate than children and older adults. A better understanding of oncologist‐ and AYA survivor‐reported barriers, facilitators, and potential areas for CT enrollment improvement is needed. Procedures From December 2019 to August 2020, we conducted 43 semi‐structured interviews with oncologists (n = 17) and AYA cancer survivors (n = 26) who were offered and/or participated in CTs at cancer centers in California and Utah. Thematic analyses were used to interpret the findings. Results Oncologists identified a lack of available CTs, strict eligibility criteria, lack of awareness of open CTs, and poor communication between pediatric and adult oncologists as major barriers to enrollment. AYA cancer survivors identified financial and psychosocial barriers, and a poor understanding of what a CT means and its potential benefits as barriers to enrollment. Areas for improvement identified by oncologists and AYAs include educational, financial, and psychosocial support to AYAs. Oncologists also emphasized the need to increase CT availability, improve awareness of open CTs, and better communication between both pediatric and adult oncologists and oncologists and AYAs. Conclusions For AYAs with cancer, a lack of CT eligibility and physician awareness of open CTs likely factor into their lower CT enrollment. Potential strategies to improve AYA enrollment in CTs require comprehensive collaboration between pediatric and adult institutions, as well as educational, psychosocial, and financial support to AYAs.
Background Caregivers of children with newly diagnosed type 1 diabetes (T1D) maintain close contact with providers for several weeks to facilitate rapid adjustments in insulin dosing regimens. Traditionally, patient glucose values are relayed by telephone for provider feedback, but digital health technology can now enable the remote sharing of glucose data via mobile apps. Objective The aim of this study was to test the feasibility of remote glucose monitoring in a population of children and adolescents with newly diagnosed T1D and to explore whether remote monitoring alters habits for self-review of glucose data or perceived ease of provider contact in this population as compared to a nonrandomized control group. Methods Data were collected from families who chose to participate in remote monitoring (intervention group) as well as from patients receiving usual care (control group). The intervention group received Bluetooth-capable glucose meters and Apple iPod Touch devices. Patient-generated glucose data were passively relayed from the meter to the iPod Touch and then to both the electronic health record (EHR) and a third-party diabetes data platform, Tidepool. The principal investigator reviewed glucose data daily in the EHR and Tidepool and contacted the participants as needed for insulin dose adjustments during the time between hospital discharge and first clinic appointment. Families in the control group received usual care, which involved keeping written records of glucose values and contacting the diabetes team daily by telephone to relay data and receive treatment recommendations. A total of 40 families (20 for the intervention group and 20 for the control group) participated in the study. All families were surveyed at 1 month and 6 months regarding self-review of glucose data and ease of contacting the diabetes team. Results Patient-generated glucose data were remotely accessible for 100% of the participants via Tidepool and for 85% via the EHR. Survey data indicated that families in the intervention group were more likely than those in the control group to review their glucose data using mobile health apps after 1 month (P<.001), but by 6 months, this difference had disappeared. Perceived ease of contacting the clinical team for assistance was lower for the intervention group after 6 months (when receiving usual care) in comparison to during the intervention period (P=.48) and compared with a control group who did not have exposure to remote monitoring (P=.03). Conclusions Remote glucose monitoring is feasible among pediatric patients with newly diagnosed T1D and may be associated with the earlier adoption of mobile health apps for self-management. The use of broadscale remote monitoring for T1D in the future will depend on improved access to Bluetooth-enabled mobile devices for all patients, improved interoperability of mobile health apps to enable data transfer on Android as well as Apple devices, and new provider workflows to handle large-scale panel management based on patient-generated health data. Trial Registration ClinicalTrials.gov NCT04106440; https://clinicaltrials.gov/ct2/show/NCT04106440
Background Recent advances in digital health technology have accelerated interest in remote patient monitoring (RPM) for chronic disease management. Diabetes management – which has a long history of utilizing patient-generated health data (PGHD) – is well-suited to RPM innovation. However, building RPM programs requires designing new workflows for providers, who are accustomed to accessing PGHD only at scheduled visits. We conducted a pilot study of RPM in a pediatric population with type 1 diabetes (T1D) to estimate the frequency and duration of contact between patients and providers that would be needed in such a program. Methods Patients who met these criteria were approached for participation: 1) age 1-20 years, 2) diagnosis of T1D with a duration of ≥12 months, 3) use of a glooko-compatible continuous glucose monitoring (CGM) device for ≥3 months. After providing informed consent, participants’ CGM data were linked to a research team account on the glooko platform and followed for a one-month baseline period to ensure the data relay was consistently functioning, with technical assistance provided by research staff as needed. CGM data were then analyzed using the glooko population analytics platform once per month during a six-month intervention period. Participants meeting high-risk criteria, defined as >15% of glucose values >250 mg/dl or >5% of glucose values <70 mg/dl, in the prior 30 days were contacted by a pediatric endocrinologist with individualized recommendations for diabetes management. Time spent communicating recommendations to the participant by phone or electronic messaging was recorded by the provider on each date of contact. Results Of 39 participants who were enrolled and linked to the research team via glooko, 35 (90%) were successful in establishing consistent data-sharing during the baseline period and moved on to the intervention period. To date, 20 participants have completed at least 3 months of the intervention. In preliminary analyses, an average of 47% have met high-risk criteria monthly (range 40 to 55%). Contact from the pediatric endocrinologist has required a median of 10 minutes (range 5 to 25 minutes) per participant contacted each month. Of the 20 participants who have completed 3 months of intervention, 14 have repeat hemoglobin A1c (HbA1c) data available thus far, which demonstrate a median HbA1c change of -0.55% from baseline (range -1.5 to +0.5%). Complete data analysis will be available in April 2022. Discussion This pilot study indicates that RPM is feasible and potentially beneficial in a population of pediatric patients with T1D. Our data also provide preliminary estimates for provider time required to deliver effective remote assistance to patients with concerning glycemic profiles. This study and others of its type are essential so that endocrinologists can design RPM programs which efficiently provide individualized care to high-risk patients without over-burdening a limited supply of providers. Presentation: Sunday, June 12, 2022 12:30 p.m. - 2:30 p.m.
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