Empowered approaches for Type 1 Diabetes patient care in Canada
Submitted by Andrea Zides RN, BScN, CDE
Diabetes diagnoses have skyrocketed in Canada the last two decades. Diabetes Canada released updated numbers in 2022 showing that 11.7 Million Canadians are living with Diabetes or PreDiabetes. These numbers are trending upwards with no sign of leveling off. Right now, more than $50 million dollars is spent every day on health care to treat diabetes and related complications.
Breaking down DM1 shows that 300,000 Canadians may have DM1. Nationally, the average incidence been growing at 5.1% per year which is higher than the global average. Parents, children and siblings of individuals with DM1 have a tenfold greater risk of developing the disease compared to the rest of the population.
1 in 4 individuals with DM1 are diagnosed as adults. Once regarded as a childhood disease, it is time to change our thinking. If patients are not responding to oral hyperglycemic agents, give pause and consider DM1.
Risk factors for Diabetes, updated, include having a parent or sibling with DM1. Researchers suspect that our genes, ethnicity and geography play a role, but we still lack conclusive data to support this. Recent studies discuss concurrent autoimmune disorders, infant exposure to cows’ milk, Caucasian ethnicity and living in Northern locations as potential DM1 risk factors.
Let’s talk costs. Out of pocket costs for DM1 patients are continuing to rise as technology continues to evolve. One can reasonably assume that technology will continue to advance, thereby outpacing the provincial and federal legislation to fund emerging therapies. DM1 patients who use multiple daily insulin injections (basal plus bolus) cost approximately $1,100 to $2,600 per year. For those DM1 patients who use insulin pump therapy (bolus only as baseline), costs pile up at approximately $1,400 to $4,900 per year.
Let’s talk about the impact of this disease. Diabetes can reduce lifespan by 5 to 15 years. It is estimated that the mortality rate among Canadians living with diabetes is twice as high as the all cause mortality rate for those without diabetes. People with diabetes are over 3 times more likely to be hospitalized with cardiovascular disease, 12 times more likely to be hospitalized with end-stage renal disease, and almost 20 times more likely to be hospitalized for a non-traumatic lower limb amputation compared to the general population.
The sequelae of diabetes can be grim. The prevalence of clinically relevant depressive symptoms among people living with diabetes is approximately 30%. Diabetic retinopathy is the leading cause of vision loss in people of working age. Vision loss is associated with increased falls, hip fractures, and a 4-fold increase in mortality. The prevalence of diabetic retinopathy is approximately 25% in Canada. Foot ulceration affects an estimated 15-25% of people with diabetes in their lifetime.
How do we make the diagnosis? Type 1 Diabetes encompasses diabetes that is due to pancreatic beta cell destruction and insulin deficiency. Most are diagnosed before age 25 however can occur at any age. Though stereotypically patients have a thin body habitus, with the obesity epidemic, patients may present with overweight or obese stature.
Let’s shift the lens and talk about stigma. There is an overwhelming stigma associated with diabetes, even before the diagnosis is made. There is a poor understanding of sugar(s) and broader carbohydrate requirements. There are many myths exist that eliminating sugar and sweets can prevent or cure diabetes. Diabetes is falsely associated with laziness, overeating, poor life choices and negative lifestyle behaviours.
At risk populations include South Asian, African, Indigenous, Metis, Arab/West Asian and Latin American individuals. In addition to the risk factors, the ongoing burden of colonization continues to burden the Indigenous Peoples’ health. In generations past, receiving a diagnosis of DM1 meant “starting the needle”, strict dietary restrictions, and making sacrifices for the rest of ones’ life which may result in early death. Past exposure to individuals and family members who have had hypoglycemic (low) events with associated unconscious episodes may have been conflated with alcoholism, drug overdose or CVA. Viewing these events with a trauma informed lens demonstrates that there may be trauma associated these past experiences.
Stigma begins and ends with a stereotype- a division of Us versus Them- often low social status- Discrimination- Labelling- then back to Stereotype.
Modern practices drive an increased awareness for delivering the diagnosis to patients. The approach begins with awareness to stigma and trauma informed planning. Appointments should be scheduled with extra time in all age groups and all locations including the ED, Peds office, hospital setting or family practice. For peds, ensure you are speaking to the patient and not just the parents. For adult patients, invite significant others or trusted companions with consent. Emphasis should be focused on delivering a no-shame and no-blame diagnosis. Avoid leaving the diagnosis to be delivered by Endo or the Diabetes Educator. This is a trust-building opportunity between the MRP and their patient, and a very important, pivotal moment in a patients diabetes journey.
Give thought to a step-wise approach for management of DM1- Endocrinology, Ophthalmology, Dietitian, weight management, counselling/therapy to address depression/diagnosis, Podiatry, IM/Nephrology as needed. These steps cannot be managed in one visit. Tackle one thing at a time and tackle each step in due course.
Take the opportunity to congratulate your patient on each of their accomplishments in self-care and celebrate their ability in becoming a participatory member of their Diabetes journey!
Even with a stigma and trauma informed approach, and despite attempts to refute shame and blame, 33% of individuals are not comfortable sharing their diagnosis of Diabetes.
Mindful practice that prevents shame before it starts is the key to success.
‘Do Not’s’ include- ‘You gained too much weight’, ‘You need to exercise more’, ‘You can beat this’… the DM1 diagnosis is due to pancreatic beta cell destruction with subsequent insulin deficiency. Let the patient process the diagnosis and begin to make goals for their self-care. Empowerment is key!
Self-Management Education (SME) is not often taught in Nursing or Medical education, Self-management Education is a cornerstone of Diabetes care. SME is associated with clinically important benefits such as reduced A1C, improvements in Cardiovascular risk factors, reductions in foot ulcerations, infections and reduced amputations.
SME should include behavioural interventions, collaborative teaching methods and should always be targeted to the individuals’ learning needs. Diabetes patients should undergo patient specific skills training in self-monitoring of blood glucose, healthy dietary choices, prevention of complications, incorporating an individualized exercise regime, sick-day management, stress management, mindfulness and acceptance of diagnosis.
Goals for self-management education include Individualized self-management education interventions according to the type of diabetes and recommended therapy within the context of the individual's ability for learning and change, culture, health beliefs and preferences, literacy level, socioeconomic status and other health challenges. Create and offer self-management support that reflects person-centred goals and needs. Refer to local Diabetes Education Centre or Endo/IM. COVID has brought some virtual and in-home SME programs
Work with a diabetes team to establish a trusting and collaborative relationship, set goals for caring for patients’ diabetes and health, and identify strategies to help them manage their diabetes.
Remember the whole patient! Keep your goals patient-centered and embrace their successes while being mindful of their limitations.
Mindfulness matters to both the MRP and the patient! If you aren’t stretching as a practitioner, then you’re not growing!
Stress reduction practices—whether meditation, tai chi, a walk in the woods, reiki, journalling, yoga, a creative pursuit such as singing or knitting, positive self-talk, or even deep breathing—each can help calm the mind and body, and help a person be more in control of their health.
Don’t sweat the small stuff. One high A1C isn’t the big picture- it’s an opportunity for coaching.
A fundamental goal is to coach your patient to become a more participatory member of their Diabetes care journey! Take the time to congratulate each step they take that empowers them toward this goal!
The ideal balance is to achieve blood glucose levels that are as close to target as possible while avoiding hypoglycemia.
From a patient perspective remember that there are many unpredictable factors living with Diabetes. It takes time for a patient to learn about their new disease while simultaneously adapting to their new reality. Allow them the grace to make mistakes, and to learn from them. Encourage them to keep going, forgive past mistakes and embrace new practices to set them up for success. Be a positive part of the journey!