Mental health issues are astonishingly common in people with diabetes — both type 1 diabetes and type 2. These chronic conditions, which entail such immense cognitive and emotional burdens, frequently lead to anxiety, stress, and depression. And yet, according to our recent survey on the topic, only about half of diabetes patients regularly discuss their mental health with their diabetes healthcare providers.
The Healthcare Satisfaction Survey
On Nov. 4, in celebration of Diabetes Awareness Month, we announced the completion of a new survey that aimed to assess how satisfied regular Americans with diabetes are with the medical care and attention they receive. We collaborated on the effort with our friends at Thrivable, a market research platform that engages panels of people with chronic health conditions.
Diabetes is tough, and we know that not everyone gets the support they need. As one of our panelists put it: “They make it seem like it’s an easy thing to do to manage diabetes, with little consideration of stress and financial levels.” We wanted to measure how people with diabetes feel about the care they get from their healthcare providers.
This is the first of three articles that will explore the many amazing things that we learned from the Healthcare Satisfaction Survey. These three deep dives are organized around the most jaw-dropping results:
47.1 percent of people with diabetes rarely or never discuss mental health at healthcare appointments.
Black and Latino people with diabetes are about half as likely to feel supported or empowered at healthcare appointments as white patients.
22.7 percent of people with diabetes rarely or never discuss diet or exercise with their healthcare providers, and about 50 percent rarely or never discuss their lab results.
Diabetes and Mental Health
If you’re a member of the diabetes community, there’s an unfortunately high probability that you have firsthand experience with the intersection of diabetes and mental health. Studies show that depression, for example, is “more than three times higher in people with type 1 diabetes … and nearly twice as high in people with type 2 diabetes.” Diabetes is further associated with anxiety, stress, and even the prevalence of eating disorders. Diabetes “distress” is a regular part of life for millions of adults.
Moreover, these mental health issues can be intimately related to metabolic health. It doesn’t take a scientific study to realize that diabetes distress and burnout can make it more challenging to manage your blood sugar. Mental health issues are associated with higher glucose levels and an increased likelihood of diabetic complications and early death.
Despite the strength of these connections, we have heard many in the diabetes community — patients and clinicians alike — complain that patients just do not get the type of mental health attention that they deserve. The Healthcare Satisfaction Survey was designed, in part, to assess how regular folks with diabetes felt about the mental health attention that they were getting.
The Thrivable Panel
Our 532 survey panelists were selected by Thrivable to create a nationally representative sample. The participants hailed from all parts of the United States, were of all different ages, and were ethnically and socioeconomically diverse. About 60 percent of the panel had type 2 diabetes, and most of the rest had type 1. Our participants hold many different types of insurance coverage, including Medicare, Medicaid, private insurance, marketplace insurance, and employee insurance. Some have no insurance at all.
Healthcare Providers and Mental Health Care
47 percent of all respondents reported only rarely or never discussing mental health at their diabetes healthcare appointments — a finding that did not vary significantly between types 1 and 2.
We found this result extremely distressing, given how intertwined mental well-being is with optimal diabetes management. If patients aren’t regularly speaking to their doctors and other providers about diabetes distress, who are they speaking to? Are they getting the help they need?
Experts are beginning to recognize how integral flourishing mental health is to good diabetes management. A 2020 review argued that endocrinology clinics should integrate behavioral health services into their standard care offering in order to optimize patient health and improve quality of life. Other studies have identified the same opportunity for improvement. But even if diabetes authorities move quickly to advocate for such changes, it will be years before their recommendations filter down to patients that need help today.
We found hints of a striking inverse relationship between the credentials of the healthcare provider and the likelihood that they would discuss a patient’s mental health. Certified diabetes educators (CDCESs) and diabetes educators were more likely (a combined 54.8 percent) to address the topic than doctors, endocrinologists, and nurse practitioners (38.5 percent).
In fact, diabetes coaches — an uncredentialed position — were the most likely to frequently address mental health, possibly an indication of the way in which our medical system tends to pass off these psychological issues as a secondary concern. We here at Diabetes Daily are huge fans of diabetes coaches and know that they are a vital help to many. Diabetes coaches also got some of the highest scores for helping patients feel validated, empowered, and supported.
A potentially surprising result: 41 percent and 25.7 percent of Black and Latino survey respondents, respectively, rarely or never discussed mental health, compared with 53.6 percent of white participants.
Is this a rare example of American minorities getting more attention than their white peers?
That’s the optimistic interpretation, but it’s also possible that this result is just another indication of systemic inequities and health outcome disparities. Perhaps white diabetes patients are less likely to discuss their mental health status with their diabetes care providers because they’re better able to access professional psychological help. Or perhaps they are less likely to experience diabetes distress in the first place, as some studies have suggested.
There’s a similar association for income; about 55 percent of those that reported earning over $100,000 per year discussed mental health only rarely or never, compared with 29.7 percent of those in the lowest income bracket.
Healthcare Providers and Emotional Support
And then there’s the experience of the healthcare appointment itself. It’s tough to get the most out of the opportunity to refine your care if you feel dismissed or ill-treated during the visit. We asked our panel whether they felt validated or invalidated, empowered or judged, and supported or unsupported during their appointments.
About two-thirds of patients reported that they felt somewhat or very validated at their healthcare appointments, and slightly more felt somewhat or very supported or empowered. It’s heartening to learn that a majority of patients are taking some emotional strength from their medical appointments, but the results were by no means universal.
Here’s what else we learned:
Patients with type 1 diabetes tend to have better experiences at their healthcare appointments than patients with type 2; they were more likely to feel validated, empowered, and supported.
Men were generally more satisfied with the emotional support they receive at appointments. Females were about four times as likely to feel somewhat or very unsupported and three times as likely to feel somewhat or very judged.
White patients also had better experiences, especially in comparison with Black and Latino patients, who were far more likely to be invalidated, unsupported, and judged.
Income made a difference again. Our wealthiest survey participants were the most likely group to feel very validated, very supported and very empowered.
Some of these disparities, clearly, cannot simply be fixed by targeted improvements in bedside manner. Nevertheless, the results do suggest how our diabetes care providers might prioritize changes in their approach, so as to empower those who need it most.
Healthcare Providers and Language
The Healthcare Satisfaction Survey also asked about the language used by healthcare professionals — an element of care that has come under increasing scrutiny in recent years. The “Language Matters” movement has pushed for clinicians and other diabetes professionals to use language that helps lower anxiety and build confidence, and to avoid common terms that can be interpreted as judgmental.
As one panelist put it: “Language use is so critical; providers often do not understand the lived experience of diabetes.”
About 25 percent of survey participants reported that their providers used potentially problematic terms such as “non-compliant” or “good/poor adherence” or “good/bad control,” while a higher proportion used neutral alternatives. We here at Diabetes Daily found the result fairly encouraging.
It’s our impression that the Language Matters movement has been influential among diabetes authorities. Hopefully, our results show that healthcare professionals are thinking more than ever about how to communicate with patients empathetically.
Mental Health Resources for People With Diabetes
If you have mental health challenges that your medical team has not yet addressed, it’s important to know that there are resources available. Please don’t be shy about asking for help.
As the Healthcare Satisfaction Survey suggests, these issues are not always given the prominence that they might deserve by the professionals who treat diabetes. To be clear, the purpose of this article is not to criticize doctors, who often just don’t have enough time to cover every angle that they’d wish to.
But the truth is that the treatment of diabetes-related mental health issues is very often a fragmented affair. Patients often end up seeing one doctor for their metabolism, and another for their brain, and the two of them never collaborate, despite how intertwined the conditions really are. Many find that they need to synthesize the advice from multiple professionals with the help available from other options, such as online support groups.
In part two, we will discuss another important issue regarding healthcare access and fairness: the many racial and socioeconomic disparities revealed by our survey.