Objective
Our project uses technology and digital health strategies to “drive” a proven diabetes distress intervention (REACHOUT-BC) to adults with type 1 diabetes (T1D) who need it the most. The overall goal is to test whether participation in 6 months of the REACHOUT-BC intervention will lower diabetes distress (DD) levels in T1D adults living in rural and remote communities in Interior British Columbia (BC).This project has three objectives.
Objective 1: To work in partnership with T1D adults, clinical psychologists, behavioural scientists, and biomedical engineers and create a virtual care platform (REACHOUT-BC) that delivers psychosocial support to T1D adults living in rural and remote areas of Interior BC.
Objective 2: To use a framework called RE-AIM to evaluate the extent to which the intervention reached the larger T1 community, was effective in lowering diabetes distress levels, was adopted by different clinics, was delivered as designed, and can be maintained over the long-run. We will also look and how easy it is to use the platform and its different support features.
Objective 3. To conduct an investigation of REACHOUT-BC to figure out what helps or hinders getting the intervention out to the T1D community as well as the potential it has to continue to be used from the view of participants, Peer Supporters, researchers, knowledge users, and other stakeholders.
If successful, this novel approach to reaching the “hard-to-reach” could be adopted for other vulnerable, high-risk, populations in BC and across Canada.
Background Rationale
Although rates of depression are high in T1D adults compared to the general population, it is diabetes distress that is most tightly linked to poor diabetes-related health outcomes. Higher DD levels are associated with higher blood sugar levels, blood pressure, and cholesterol; higher rates of not taking medication as prescribed, lower levels of physical activity, and poorer eating patterns; lower self confidence and lower quality of life; and more missed medical visits. A great deal of research has found self-management interventions reduce DD. Although promising, the majority of DD interventions are conducted face-to-face in a group-based setting, and not easily accessible to T1D adults living in rural and remote communities. We will test two implementation strategies: peer support combined with digital health platforms, to deliver low-cost and long-lasting psychosocial support to T1D adults who live in locations far in proximity to health and mental health care centres.
Peer support models in diabetes have been tested in a variety of medical settings using different approaches of delivery. Many of these studies are conducted with adults with type 2 diabetes (T2D). One of the few peer support interventions conducted with T1D adults found that participation in group-based discussion on DD led to DD reductions at 12 months. Given the growing problem of diabetes, financial barriers, and limited human resources, peer support is a potentially low cost method for providing long-term behavioral and psychosocial support. Digital and/or mobile health interventions targeting DD have been associated with improvements in blood sugar control, patient satisfaction, reduced health care costs, and fewer hospitalizations. The majority of the digital/mobile health interventions in diabetes focus on medical outcomes rather than psychological outcomes. To bring these types of interventions to individuals who have little to no access to care, digital/mobile health platforms have great potential. Our study will apply a peer support model using a digital/mobile health platform to delivery emotional support to T1D adults who need it the most.
Description of Project
Mental health is often overlooked in diabetes care. In fact, public health care coverage in British Columbia (BC) fails to cover this important treatment that patients value allowing only those with private insurance access to counselling services. Among the different emotional struggles that patients with diabetes experience, it is diabetes distress, not depression, that is most strongly associated with poor blood sugar control and worse diabetes-related heath outcomes. Diabetes distress (DD) 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. In 2027, there will be 69,700 British Columbians diagnosed with type 1 diabetes (T1D) of which almost 50% will likely experience high levels of distress. Given the lack of heath care professionals working in rural and remote communities in Interior BC, T1D adults in these regions have difficulty getting the health and mental health care they need. For this reason, BC has identified mental health care and rural and remote health care services as two of the five provincial health care priorities. Our project uses technology and digital health strategies to “drive” a proven diabetes distress intervention to T1D adults who need it the most. If successful, this novel approach to reaching the “hard-to-reach” could be adopted for other vulnerable, high-risk, populations in BC and across Canada.
We hypothesize that after using the REACHOUT-BC virtual care platform for 6 months, participants will experience lower levels of diabetes distress. This project has three objectives.
Objective 1: Work in partnership with T1D adults, clinical psychologists, behavioural scientists, and biomedical engineers and create a virtual care platform (REACHOUT-BC) that delivers psychosocial support to T1D adults living in rural and remote areas of Interior BC.
Objective 2: Use a framework called RE-AIM to evaluate the extent to which the intervention reached the larger T1D community, was effective in lowering diabetes distress levels, was adopted by different clinics, was delivered as designed, and can be maintained over the long-term. We will also look at how easy it is to use the platform and its different support features.
Objective 3. Conduct an investigation of REACHOUT-BC to figure out what helps or hinders getting the intervention out to the T1D community as well as the potential it has to be maintained and used continually from the view of participants, Peer Supporters, researchers, knowledge users, and other stakeholders.
This study consists of three parts. In Part 1, participants (T1D adults) will work with our technology partner (WelTel) in a back and forth process to design, test, and improve a virtual care platform that provides different methods of support using Peer Supporters as the individuals who deliver the intervention. Part 2 will conduct focus groups with T1D adults to tailor a Peer Supporter training program and then, conduct a 16-hour training program that equips trainees with communication skills, motivation strategies, and lifestyle change techniques. Part 3 looks at whether it is realistic to conduct this 6-month intervention and how satisfied participants are with REACHOUT-BC. Participants will choose a Peer Supporter for one-on-one support and have access to group support from the larger community of Peer Supporters. Participants will have contact with their Peer Supporter at least once per week. However, participants are encouraged to look for additional support (one-on-one and group) as much and as often as they want. If successful, not only will this intervention prove to be novel and effective, but more importantly, it will be low-cost and accessible to every T1D adults regardless of where they live.
Anticipated Outcome
We predict that participation 6 months of the REACHOUT-BC intervention will lower diabetes distress (DD) levels in adults with type 1 diabetes (T1D) living in rural and remote communities. We also expect that we will see improvements in perceived social support, resilience, depressive symptoms, and quality of life. Based on this success, our team will produce a REACHOUT-BC implementation toolkit for local and provincial health care organizations to adopt in other rural and remote communities of the Northern Health Authority, Vancouver Coastal Health Authority, First Nations Health Authority, Fraser Health Authority, and Vancouver Island Health Authority. This toolkit will include the following:
(1) Automated “Screening, Identification and Referral” System will be integrated seamlessly across all levels of healthcare in the IHA (primary care and community health centres, diabetes centers, and hospital settings). Screening will assess distress risk and create a unique profile of the seven distress dimensions (powerlessness, hypoglycemic distress, negative social perceptions, management distress, eating distress, family and friends’ distress, and physician distress). Patients with clinically significant scores will be automatically referred to REACHOUT-BC.
(2) YouTube orientation video will introduce the different features of the platform and recommendations on how to best utilize them. The REACHOUT-BC virtual platform will be made available to patients at risk for distress.
(3) T1D Peer Supporter Training Manual will be co-created by our Patient-led Intervention Adaptation Team, Interior Health (IH) Patient Advisory Board, and research scientists. Peer supporters will be equipped with active listening skills, motivational interviewing techniques, and behavioral modifications strategies.
Sustainable workforce: To ensure long-term sustainability, individuals who initially received peer support will “pay it forward” and undergo training to become our next generation of Peer Supporters. REACHOUT-BC reflects the BC Ministry of Health policy directions in rural health as it capitalizes on virtual care, integrates the Peer Supporter into the interdisciplinary practice teams, and increases access to diabetes-specific psychosocial support.
T1D community and lay public: To reach the T1D community, our T1D advocacy organizations (JDRF, Diabetes Canada, Young and Type 1) and social media outlets will showcase the REACHOUT-BC platform on their websites, at patient advocacy events (Type 1 Expo, Annual JDRF walk), and in e-blasts, newsletters, Twitter, and other forms of social media. To connect with the lay public, we will publish articles about REACHOUT-BC in media outlets including Conversation Canada and Informed Opinions.
Academia and the Scientific Community. We will disseminate our research findings through peer-reviewed publications in high impact journals (Diabetes Care, Diabetes Technology and Therapeutics, Journal of Medical Internet Research) and presentations at local, national, and global conferences in the fields of diabetes (American Diabetes Association, Advanced Technologies and Treatment for Diabetes)
If our peer-led, virtual care model proves successful, this approach can be transferrable to other chronic illness and mental health patient communities including patients with type 2 or gestational diabetes, asthma, cancer, depression, and anxiety. It can also target medically underserved and high-risk populations within BC and across Canada.
Relevance to T1D
Without insulin, T1D adults will die. To prevent hypoglycemic events and diabetic ketoacidosis, T1D patients need to, on a daily basis, inject insulin; monitor blood glucose (BG) up to 8 times per day; treat “low” and “high” BGs, when needed; calculate insulin to carbohydrate ratios at breakfast, lunch, and dinner; carry insulin pens or pumps, BG testing strips or continuous glucose monitors (CGMs), and glucose tablets at all times; and test their BG every time before driving a car or going to the gym. Given this constant and unremitting burden of responsibilities, it is not surprising that T1D adults report emotional distress. Among the different psychosocial struggles that patients with diabetes experience, it is diabetes distress (DD), not depression, that is most strongly associated with poor glycemic control and worse diabetes-related health outcomes. DD 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. In a sample of 500 Canadian adults with diabetes, T1D adults were more likely to report DD (47.5% T1D vs. 27.5% T2D) and experience greater stress with regard to finances, work, and emotional functioning compared to their T2D counterparts. In 2027, there will be 69,700 British Columbians diagnosed with T1D. According to a Canada-wide survey, 47.5% of T1D adults will likely experience clinically significant levels of DD. Recently, we conducted a preliminary survey examining DD rates in a sample of 59 T1D adults (male=10, female=49), the majority (80%) living in rural and urban regions of BC. The percentage of adults reporting moderate to high levels of distress across the seven subscales were as follows: powerlessness (92%), eating distress (81%), management distress (59%), hypoglycemia distress (58%), negative social perceptions (58%), friends and family distress (51%), and physician distress (46%).
In cross-sectional studies, higher DD levels are correlated with higher hemoglobin A1c (A1c) levels, blood pressure, and lipids; higher rates of medication non-adherence, lower levels of physical activity, and poorer dietary patterns; lower self-efficacy, empowerment, and quality of life; and greater number of medical appointments and missed physician visits.In the few longitudinal prospective studies with T1D adults, higher baseline DD level has been found to be a predictor of subsequent higher A1c and medication non-adherence. Finally, adults with DD have a 1.8 times and 1.7 times higher mortality rate and risk for developing cardiovascular disease, respectively. Clearly, to improve diabetes-related outcomes in the T1D community, we need to address DD now.
Canada has one of the highest incidence rates of T1D worldwide. By 2029, an estimated 11% of Canadians will be diagnosed with diabetes accounting for over $5 billion in health care costs. By addressing mental health in diabetes, particularly DD, we can improve short-term (self-management behaviour), intermediate (blood sugar control, and long-term outcomes (complications and mortality). Moreover, by taking advantage of digital health strategies, not only can we “drive” our mental health interventions to rural and remote communities, but we can do so efficiently and at a low cost. REACHOUT-BC can potentially change the landscape of T1D diabetes in Canada.