A qualitative study of barriers and facilitators to adolescents and young adults' participation in cancer clinical trials: Oncologist and patient perspectives.

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.

Remote glucose monitoring is feasible for patients and providers using a commercially available population health platform.

Objective: Remote patient monitoring (RPM) holds potential to enable more individualized and effective care for patients with type 1 diabetes (T1D), but requires population analytics to focus limited clinical resources on patients most in need. We explored the feasibility of RPM from patient and provider standpoints using a commercially available data analytic platform (glooko Population Health) among a cohort of youth with T1D. Study design: Patients aged 1-20 years with established T1D (≥12 months) and CGM use (≥3 months) were recruited to participate. Participants' CGM devices were connected to the glooko app and linked to the research team's glooko account during a one-month baseline period. This was followed by a six-month intervention period during which participants with >15% of glucose values >250 mg/dl or >5% of values <70 mg/dl each month were contacted with personalized diabetes management recommendations. Participants were surveyed about their experiences, and effects on glycemic control were estimated via change in glucose management indicator (GMI) generated from CGM data at baseline and completion. Changes in time spent within various glucose ranges were also evaluated, and all glycemic metrics were compared to a non-randomized control group via difference-in-difference regression, adjusting for baseline characteristics. Results: Remote data-sharing was successful for 36 of 39 participants (92%). Between 33%-66% of participants merited outreach each month, and clinician outreach required a median of 10 minutes per event. RPM was reported to be helpful by 94% of participants. RPM was associated with a GMI change of -0.25% (P=0.047) for the entire cohort, and stratified analysis revealed greatest treatment effects among participants with baseline GMI of 8.0-9.4% (GMI change of -0.68%, P=0.047; 19.84% reduction in time spent >250 mg/dl, P=0.005). Conclusions: This study demonstrates the feasibility of RPM for patients with T1D using a commercially available population health platform, and suggests that RPM with clinician-initiated outreach may be particularly beneficial for patients with suboptimal glycemic control at entry. However, larger randomized studies are needed to fully explore the glycemic impact of RPM. Clinical trial registration: https://clinicaltrials.gov/ct2/show/NCT04696640, identifier NCT04696640.

How Do Adolescent and Young Adult Patients with Cancer Manage Their Chemotherapy-Related Symptoms at Home?

Chemotherapy can cause many distressing side effects, potentially impacting treatment completion and quality of life in adolescent and young adult (AYA) patients with cancer. To identify ways to help mitigate chemotherapy-related symptoms, we sought to elicit barriers and facilitators to managing symptoms experienced by AYAs with cancer through interviews. Qualitative thematic analysis identified three main domains: (1) managing chemotherapy symptoms (e.g., medication, home remedies), (2) anticipating and mitigating symptoms (e.g., management of symptoms at home, anticipatory guidance), and (3) knowing when to seek care (e.g., unexpected and unusual symptoms). This study elucidated that AYAs can successfully manage symptoms at home when given the proper guidance and this could be a focus of future efforts to improve outcomes in this population. The Clinical Trial Registration number is NCT04594096.

Feasibility and Impact of Remote Glucose Monitoring Among Patients With Newly Diagnosed Type 1 Diabetes: Single-Center Pilot Study.

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.

Patient Perspectives on Use of Video Telemedicine for Type 1 Diabetes Care in the United States during the COVID-19 Pandemic.

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.