The Future of Diabetes Patient Care Needs to Go Beyond A1c
JDRF’s chief scientific officer Sanjoy Dutta and a group of leading professionals in diabetes care and research addressed the latest updates in diabetes patient care in a presentation at the Advanced Technologies and Treatments for Diabetes Conference (ATTD) 2022. The presentation, titled “Utility of Patient-Reported Outcomes in Therapy Development for Type 1 Diabetes,” focused on supporting patient-first care on the path to finding ways to prevent the disease altogether.
What does “going beyond A1c” mean for people with diabetes?
While the emotional component of care isn’t new to people who live with diabetes, it is a relatively new standard of care that should be practiced among doctors everywhere. So, if you find yourself in a situation where these standards are not upheld as a person with diabetes, remember that you have options about who you go to for your diabetes care.
You have the opportunity to advocate for better patient outcomes!
Before diving into the findings presented in this session, remember that you can hold your doctor accountable to these standards. You are not alone on this mission, and your care should go far beyond an A1c check.
Are patients with diabetes put front and center in diabetes care + research?
To set the tone for the session, Dutta posed a fundamental question regarding the future of patient care in people with diabetes: “How can it be done in a way that is synchronized and standardized and ultimately useful for the end-user and caregiver?”
Dutta noted that diabetes stages research is “a work of 20+ years.” Many scientists and organizations are involved and recognize the research’s importance.
“We not only consider the pipeline of therapy development going from basic research all the way into the hands of people with diabetes but also into the stages a person goes through in their diabetes journey,” Dutta said.
Today, organizations like JDRF, among others, aim to improve people’s lives with diabetes by “accelerating breakthroughs” to prevent and treat the disease. Ultimately, the goal is to live in a world without diabetes, where future generations don’t have to worry about it—a future where it is cured.
Cures research remains a top priority to arrive at that ultimate end goal. Until there is a cure, researchers and doctors have to focus on creating treatments that best serve people with diabetes.
As a person with diabetes, you know that if you don’t feel good about your care, you are unlikely to act on your doctor’s advice about managing your diabetes. Dutta furthered that teams must focus on how people with diabetes perceive their care for research and development to succeed.
But how exactly can that be done?
To get the best answers, you must ask the right questions!
Researchers must consider the needs of people with diabetes to ensure their work focuses on patient-centered outcomes. People with diabetes need to feel seen, and they should be given personalized care that is uniquely tailored to their needs.
Dutta proposed the following questions to help create patient-focused solutions:
- “How do we screen for a person’s risk of developing the disease?”
- “How can we change the course of the disease? Slow it down, or ideally reverse it or cure the disease?”
- “Are there opportunities we can offer insulin independence, for example, to stem-cell-based beta cell replacement therapies?” (i.e. Is there a possibility to develop treatments for people with diabetes that would allow them to be off of insulin therapy?)
- “How can we improve the lives of people living with the disease? Glucose control, metabolic control?”
- “How can we avoid complications or organ failure?”
Diabetes requires 24/7 attentiveness, and you don’t get a break when you’re living with it. You must continue to treat and manage it 365 days a year! Therefore, there is a significant psychosocial and mental health burden on people living with the disease. Caregivers get a small taste of the workload.
This experience is critical for doctors and researchers to be aware of to create patient-focused therapies and treatments.
People with diabetes know this—they live it every day. Still, it’s taken caregivers and researchers longer to add the emotional/behavioral component to their research and therapy considerations and move beyond transactional interactions at diabetes checkups into a more holistic approach.
The burdens of diabetes change with age
Dutta explained that the longer you live with diabetes, the way you experience its burdens changes. Here’s how that may look across the lifetime of someone living with diabetes:
- Diagnosis: adjustment reactions, fear, grief, anger, independence, and autonomy.
- Self-management and coping: periods of waning self-management, maladaptive eating, diabetes burnout, and life transitions.
- Disease progression and onset of complications: distress, adjustment reactions, fear, and coping difficulties.
- Aging and impact on self-management: physical skills, cognitive decline, and coping.
While these burdens are a rather grim side of diabetes, the point of evaluating them is to answer another critical question: How can people living with diabetes today live as diabetes-free as possible?
People living with diabetes want more solutions that help them be less hands-on with their day-to-day management. They want more freedom from the physical and mental burdens of living with the disease.
The burdens of diabetes affect everything a person does and experiences daily, from sleeping to eating to exercising to peer pressure to family distress to burnout to anxiety to learning and focus difficulties, etc. More hands-off and automated treatments could allow people with diabetes to think less about it and get more of the support they need from tech.
Focus on personalized care + measurement standardization
Dutta highlighted the areas that JDRF focuses on today:
- “Outcomes beyond A1c.”
- “Patient preferences must be allowed to guide their care.”
- “Drug and device development are putting the patient at the center—but need to accelerate the process.”
But—a few patient care areas are lacking and need addressing!
Researchers and providers must tap into patient preferences and put them front and center to fulfill the goals of treatment and new therapies. A healthcare system that encourages and mandates the implementation of the behavioral/emotional component of a person’s diabetes, along with the clinical part, must also be implemented. And finally, personalization of care needs to be a key focus.
There needs to be global buy-in and consensus for this to happen as successfully as possible. The diabetes space needs to be a place where collaborations and partnerships are the standards to enable patient success.
The bottom line for researchers + caregivers
These statements touch the surface of what the current state of patient care lacks, but we must also celebrate how far it’s come! Innovative organizations and people are working today to achieve all of the abovementioned goals. And the diabetes community has a voice in it all!
Dutta noted that “although it’s a very cliche expression,” “it takes a village” to do this work. This “village” includes panelists featured during this presentation, representing Lexicon Pharmaceuticals, Tandem Diabetes Care, ViaCyte, and Novo Nordisk.
Panelists representing these organizations showcased impressive research that highlighted the technical components of the future of diabetes care. Most importantly, they agreed that diabetes care needs to focus on the patient experience to be successful.
The FDA takes patient-reported outcomes into account to evaluate the effectiveness of treatment. Therefore, the healthcare system should also prioritize any research or therapies’ emotional/behavioral patient outcomes.
While the future of diabetes care is to cure diabetes altogether and not even have to worry about treatment or therapies, the near future focuses on going beyond A1c readings and focusing on the patient experience.
And this is something that people with diabetes want to flourish!
Research + findings
Learn about some of the innovative research and findings referenced throughout this presentation here:
- “The Impact of Sotagliflozin on Renal Function, Albuminuria, Blood Pressure, and Hematocrit in Adults With Type 1 Diabetes”
- “Sotagliflozin in Patients with Diabetes and Recent Worsening Heart Failure”
- “I Feel Human, I Feel Normal: A Qualitative Study of Experiences with Control-IQ Technology in Early Adopters”
- “Impact of hypoglycemia on patient-reported outcomes from a global, 24-country study of 27,585 people with type 1 and insulin-treated type 2 diabetes”