Objective
The goal of this study is to investigate whether participation in REACHOUT, a 6-month intervention that delivers peer-led mental health support using a virtual care platform (e.g., Mobile App) will reduce diabetes distress compared to not receiving the intervention. REACHOUT is a Mobile App developed in collaboration with adults with T1D, clinical psychologists, digital health specialists, and rural health experts. REACHOUT uses digital health technology to “drive” mental health support to T1D adults in the greatest need. If successful, this innovative approach is expected to reach the “hard-to-reach” using digital tools that can be adopted for kids, teens, adolescents, and young adults with T1D in BC and across Canada. Our study has three objectives. The first objective is to evaluate the REACHOUT intervention with regard to the following: how many adults with T1D do we reach across four health authorities (Interior Health, Northern Health, Fraser Health, Vancouver Island Health), how effective it is in reducing diabetes distress, whether health care settings in our target health authorities adopt REACHOUT, whether we delivered the intervention as designed, and whether REACHOUT continues to be utilized well beyond the end of the study. The second objective is to explore the facilitators and barriers to launching REACHOUT and potential for it be utilized over the long-term from the perspective of T1D participants, Peer Supporters, researchers, and stakeholders. The third objective is to conduct an economic evaluation of REACHOUT to determine if the mental health-related benefits participants experience from the intervention outweighs the costs associated with carrying out and maintaining REACHOUT.
Background Rationale
In 2027, there will be 69,700 British Columbians diagnosed with type 1 diabetes (T1D) (8) of which almost 50% will be experience high levels of diabetes distress (9). Diabetes distress refers to the unique and often hidden emotional burdens, relentless worries, and ongoing concerns that are part of the spectrum of patients’ experience when managing this demanding, lifelong disease (3). Given the shortage of diabetes-trained psychologists practicing in rural and remote settings, T1D adults living in these communities have the least access to these services. Accordingly, British Columbia (BC) has identified “mental health care” and “rural and remote health care services” as two of the five provincial health care priorities.
There is a growing body of evidence demonstrates interventions can reduce diabetes distress, however patients who live in rural and remote settings cannot access these services. One review focused on T1D adults found that five of the six randomized controlled trials (RCTs) of self-management interventions led to significant reductions in diabetes distress compared to a control condition; and seven of the nine pre-post studies were also associated with improvements in diabetes distress (22). Fisher, Polonsky and colleagues compared T1D adults from a study that had no intervention to individuals participating in a diabetes distress intervention study found improvements in distress scores at 9-months for the latter group, but not the former (25). Although promising, the majority of diabetes distress interventions are conducted face-to-face in a group setting, and not easily accessible to T1D adults living in rural and remote communities. We will test two implementation strategies: peer support and a digital health platform, to deliver low-cost and sustainable mental health support to T1D adults living in settings with fewer health and mental health care resources.
Peer support models been found lead to clinical and mental health improvements compared to a control condition (26-38). However, these studies have been predominantly conducted with adults with type 2 diabetes (39-41). One of the few peer support interventions conducted with T1D adults found that participation in group-based discussion on DD were associated with positive changes in diabetes distress levels at 12 months (43). Given the increasing prevalence of diabetes, the constraints on financial, human, and health-care resources for diabetes care, and the need for ongoing support for patients with diabetes, peer support is a cost-effective model for providing long-term mental health support (44). Furthermore, one study found that T1D highly value peer support as peers can validate anxieties and concerns without passing judgment, serve as good role models, offer pragmatic advice, and are more accessible than health care professionals (45).
Digital health interventions targeting diabetes have been associated with improvements in blood sugar control (46), patient satisfaction (11), reduced health care costs (47-49), and fewer hospitalizations (46). According to a recent meta-analysis of eight interventions targeting T1D populations, participation in digital health interventions led to significant improvements in blood sugar control compared to a control condition (49). Further analyses demonstrated that the greatest blood sugar control benefits were experienced by participants of adult age and who utilized digital health models. Whereas the majority of digital health interventions have focused on improving self-management to improve clinical outcomes, very few, if any, have explored the delivery of mental health support to improve psychological functioning such as diabetes distress.
Access to mental health support for patients with chronic illness living in rural and remote settings of BC is limited. To extend the reach and impact of low-cost and sustainable mental health interventions to medically underserved populations, digital health platforms involving peer support represent an innovative and promising solution.
Description of Project
Mental health is often overlooked in diabetes care. In fact, British Columbia’s provincial health plan fails to cover this important health care priority allowing only those with private health insurance or personal means access to these services. Among the different emotional struggles that patients with diabetes experience, it is diabetes distress that is most strongly linked to poor blood sugar control and worse diabetes health consequences. Diabetes distress refers to the unique and often invisible emotional burdens, relentless worries, and ongoing concerns that patients with type 1 diabetes (T1D) experience when managing this demanding, lifelong condition (3). In 2027, there will be 69,700 British Columbians diagnosed with T1D of which almost 50% will be likely to experience high levels of distress. In addition. research shows that if individuals do not obtain treatment or counseling, distress levels will not improve on their own. Given the general shortage of mental health professionals who are trained in T1D, adults who are living in rural and remote settings will have the greatest challenge obtaining the services they need. This gap in health care is why BC has identified “mental health care” and “rural and remote health care services” as two of the five provincial health care priorities.
Our proposal seeks to solve three problems in BC’s diabetes care: the availability, affordability, and accessibility of mental health support for T1D adults living in settings with limited resources. Considering financial burden and limitations to BC’s provincial health coverage, peer support has been demonstrated to be a low-cost and viable approach to long-term self-management support. In addition, interventions that use technology (e.g., digital health platforms) have been found to improve mental and emotional health. REACHOUT is a Mobile App developed in collaboration with adults with T1D, clinical psychologists, digital health specialists, and rural health experts. REACHOUT uses digital health technology to “drive” mental health support to T1D adults in the greatest need. If successful, this innovative approach is expected to reach the “hard-to-reach” using digital tools that can be adopted for kids, teens, adolescents, and young adults with T1D in BC and across Canada.
Our study has three objectives. To first objective is to investigate the effectiveness of REACHOUT compared to wait-list control using the RE-AIM Framework (reach, effectiveness, adoption, implementation, and maintenance. Specifically, we will address the following: how many adults with T1D do we reach across four health authorities (Interior Health, Northern Health, Fraser Health, Vancouver Island Health), how effective it is in reducing diabetes distress (and, secondarily, improving A1c and time in range), whether health care settings in our target health authorities adopt REACHOUT, whether we delivered the intervention as designed, and whether REACHOUT continues to be utilized well beyond the end of the study. The second objective is to explore the facilitators and barriers to launching REACHOUT and potential for it be utilized over the long-term from the perspective of T1D participants, Peer Supporters, researchers, and stakeholders. The third objective is to conduct an economic evaluation of REACHOUT to determine if the mental health-related benefits participants experience from the intervention outweighs the costs associated with carrying out and maintaining REACHOUT.
Anticipated Outcome
With our findings from REACHOUT, we intend to achieve outcomes within and across the following communities:
REACHOUT PARTICIPANTS. Following participation in the 6-month REACHOUT intervention, we expect to observe reductions in diabetes distress as well as improvements in other endpoints including resilience, diabetes specific quality of life, general quality of life, depressive symptoms, and perceived support.
REACHOUT PEER SUPPORTERS. Following participation in the 6-month REACHOUT intervention we expect that Peer Supporters who report low distress levels at baseline will sustain these low levels while Peer Supporters who report any elevated distress levels at baseline will experience reductions in distress levels. Peer Supporters will also report improvements (if elevated at baseline) on secondary endpoints (resilience, diabetes specific quality of life, general quality of life, depressive symptoms, and perceived support).
T1D COMMUNITY. We expect that at least 75% of participants (including wait-list participants) who complete REACHOUT (n=165) will express interest in undergoing training to become the next generation of Peer Supporters. We will actively recruit these interested individuals for the future iteration of REACHOUT. We also expect that Peer Supporters will continue to serve in this peer or mentor role for subsequent research studies for other T1D populations. With each study, we intend to grow our community of Peer Supporters to deliver mental health support to other individuals with T1D including kids, teens, adolescents, and young adults living in BC and across other provinces in Canada.
NON-PROFIT ORGANIZATIONS. We will present our findings at JDRF patient education conferences as well as the annual Diabetes Canada T1D Know no Limits conference. We anticipate that JDRF Canada, Brain Canada, Diabetes Canada, and T1D Huddle will also adopt REACHOUT as a mental health support resource for its members.
HEALTH SYSTEM OUTCOMES. In collaboration with leadership in Interior Health Authority (IHA), Northern Health Authority (NHA), Vancouver Island Health Authority (VIHA), Fraser Health Authority (FHA), Vancouver Coast Health (VCH), and Ministry of Health (MOH), we expect at least 75% of diabetes education centers (as well as primary care centers and hospital emergency rooms) in each health authority to formally adopt REACHOUT as a mental health support resource to refer patients in need of social and emotional support.
RURAL HEALTH COMMUNITY. We will present our findings with leadership and members of the BC rural health network as well as the BC rural health coordination center.
ACADEMIA. We will publish our main outcomes data and secondary analysis findings in journals including Diabetes Care, Canadian Journal of Diabetes, Diabetic Medicine, Journal of Diabetes and its Complications and Diabetes Technology and Therapeutics. We will also present our research findings at several international scientific meetings including Diabetes Canada, American Diabetes Association, Advanced Technologies and Treatment for Diabetes, and the European Association for the Study of Diabetes.
FUNDING ORGANIZATIONS. We intend to use any pilot or RCT data as the basis for future grant applications to CIHR, SSHRC, Michael Smith Foundation, NIH, Leona Helmsley Trust, JDRF, Diabetes Canada, etc. to translate REACHOUT to other T1D communities. Ideally, we would like to secure enough funding to build a future REACHOUT platform from “scratch” rather than utilize an existing platform.
INDUSTRY. We will utilize our findings to seek industry partners such as Insulet, Dexcom, Medtronic, Novo Nordisk, Eli Lilly, etc. to provide ongoing funding for REACHOUT initiatives.
Relevance to T1D
Our study proposes to evaluate REACHOUT, a 6-month intervention that uses peer support digital health technology to “drive” mental health support to T1D adults in the greatest need. REACHOUT is a virtual care platform (i.e. Mobile App) created in collaboration with adults with T1D, clinical psychologists, digital health specialists, and rural health experts. Given that mental health is the cornerstone of diabetes care, REACHOUT is directly relevant to improving mental health and reducing diabetes distress for adults with T1D. If successful, this innovative approach could reach the “hard-to-reach” using digital tools that can be adopted for kids, teens, adolescents, and young adults with T1D in BC and across Canada.
Diabetes distress refers to the unique and hidden emotional burden, relentless worries, and ongoing frustrations that are part of the spectrum of patients’ experience when managing this demanding, lifelong disease (3), and, is arguably, the most prominent psychological stressor in diabetes (4). Individuals with T1D struggle with erratic, and often unexplained, blood sugar fluctuations over the course of the day, fears of dying in the middle of the night due to a severe hypoglycemic event, anxiety around going blind or having to undergo a lower leg amputation in the future, etc.
In a study our team conducted with a sample of 58 T1D adults (80% residing in BC), participants reported moderate to high levels of distress across seven distress subscales: powerlessness (91%), eating distress (81%), management distress (59%), hypoglycemia distress (57%), negative social perceptions (57%), friends and family distress (50%), and physician distress (43%) (50). In addition, we found that having only provincial health coverage was associated higher distress levels around management and the patient-physician relationships. Individuals without private insurance coverage also tended to report a sense of powerlessness around their diabetes. For this reason, we need low-cost, sustainable interventions that are not reliant on provincial funding and fully accessible to T1D adults regardless of financial and living circumstance.
We also conducted focus groups with 38 adults with T1D living in Interior BC to explore mental health needs, factors associated with accessing support, and perspectives around using peer support and digital health strategies for delivering mental health support (52). Four core themes emerged: (1) emotional challenges linked to T1D management, (2) unique T1D-related concerns in rural and remote communities, (3) previous support experiences and future support needs, and (4) diabetes-related mental health support interventions involving peer support and digital health strategies. Results revealed that existing support services are inadequate and that both individual and group-based support delivered by peers using social media and digital health strategies would be optimal features for a mental health support resource. Though T1D adults living in rural and remote settings experience distress, many have not been offered support and do not know how to seek services in the present/future. Peer support and digital health strategies are two potential solutions to address this care gap.
Finally, interventions using technology have been shown to reduce distress among adults with T1D living in BC. In a sample of 60 adults with T1D, we examined the impact of a 6-month multi-component intervention on reducing DD (53). One component involved group-based support delivered by peers using an existing texting platform (WhatsApp). A second component involved monthly Zoom-based “video huddles” that allowed participants to ask a health care professional about a specific diabetes topic and engage in a discussion about this topic with their T1D peers. Following the 6-month intervention, we observed significant reductions in overall distress, powerlessness, management distress, hypoglycemic distress, and eating distress. Findings suggest that peer support and digital health strategies are associated with lower distress levels.