Life Lessons and Diabetes Research Free

Many studies have examined the effects of relationships on health outcomes. The World Health Organization (WHO) summarized the data focused on social isolation, or the absence of significant relationships. It found that the health risks associated with social isolation are comparable to those associated with obesity, smoking, and drinking alcohol. Some of these risks include a 50% increased risk of dementia, a 30% increased risk of cardiovascular disease and stroke, and a 25% increased risk of early death (1). In a 2012 U.S. study, 20–43% of adults >60 years of age reported experiencing frequent or intense loneliness (2). Based on these findings, the WHO announced the creation of its Commission on Social Connection to address loneliness as a pressing health threat, promote social connection as a priority, and accelerate the scaling up of solutions in countries of all economic strata.

There is also a large body of research demonstrating that higher levels of social support—the opposite of social isolation—are protective of health. We know that having good connections and strong social support networks can improve one’s health and lengthen one’s life span. We also know that this support can come from many sources (e.g., family members, friends, and coworkers) and take many forms, such as emotional support and intimacy, instrumental support (i.e., doing things for others), and informational support (i.e., providing advice and know-how) (3). It is also noteworthy that psychological factors that increase the risk of heart disease, such as anger, hostility, depression, and anxiety, also affect the quality of one’s relationships, which is an important interaction (4).

In my clinical work as a psychologist with people with diabetes, it was clear that their relationships, especially with their partners, were crucial to how they managed and coped with diabetes. In my early research, I assessed this issue through surveys, focus groups, and cross-sectional studies (5–13). The data I gathered formed the basis of a randomized controlled trial (RCT) funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to assess the potential efficacy of a couples-focused intervention called the Diabetes Support Project (DSP) (14,15).

The DSP was one of the first studies of people with diabetes and their partners, and the first to compare a couples-based behavioral intervention to an individual intervention (not to usual care, which would be no active intervention) to determine whether involving partners mattered. We also included a control group who received only diabetes education because we know that such education is beneficial in itself. The couples intervention was based on interdependence theory, which posits that it is not just the presence of partners that matters, but rather it is how partners participate. Partners need to develop communal coping skills (i.e., working together, communicating well, and being aware of the impact of diabetes on both partners). Readers are referred to an excellent update on this theory by Helgeson et al. (16) for more information. To increase reach, all of the interventions in the DSP were delivered over the telephone, with couples using a speaker phone.

We found that, overall, all three intervention groups had improved A1C levels after the intervention and at the 1-year follow-up, and there were no significant differences in A1C among the groups (17). However, we then divided the groups into tertiles based on baseline A1C, yielding a group with a lower (but still higher than recommended) mean A1C (<8.2%), a middle tertile group with moderately high A1C (8.21–9.2%), and a group with very high A1C (>9.2%). We analyzed A1C outcomes after the interventions (individual vs. couple vs. education intervention) based on this stratification by baseline A1C (Figure 2). We found that all of the intervention groups in the very high baseline A1C tertile improved and that none of the intervention groups in the low baseline A1C tertile (i.e., those with A1C levels nearer to normal; a more challenging group) improved significantly. However, for those in the middle tertile, who had moderate-severe high baseline A1C levels, only the couples intervention was beneficial and yielded significant improvement in A1C.

We also asked participants how involved their partners were in the intervention, mostly as a fidelity check, and with the understanding that we could not ethically prohibit partners from listening in on the calls and reading the materials. It was striking that about 40% of the partners of people in the individual intervention arm and almost 50% of those in the diabetes education arm (which was also an individual intervention) were involved “a lot” or “all of the time.” Thus, there was some blurring of the distinctions between the groups, with participants in the individual interventions likely also benefiting from partner involvement. Clearly, for these study participants, relationships mattered!

Thus, my first lesson to impart is that, as clinicians, we need to spend time understanding the key relationships in our patients’ lives and promote ways for partners to support each other and communally cope with the many challenges of living with diabetes. Additionally, we must be prepared to be surprised. One of our DSP participants was eager for her husband to be involved in the couples intervention because she always felt that he did not care enough about her disease. She was happy that they were randomized to the couples intervention arm of the trial. Her husband participated in every call and read every handout, but she still felt that he wasn’t engaged and supportive. I think this meant that he wasn’t coping communally. However, she also said he was a great husband, she loved him, and she knew he loved her. Seeing him try to engage and help was enough for her. She reported that she was able to accept what he was able to give and to look to others for what he could not give. For her, the couples intervention was a success.

Here, I am going to make a small digression, as I was urged to do by my esteemed colleague, Dr. Barbara Anderson. I want to shift my focus briefly to youth-onset type 2 diabetes, which is type 2 diabetes diagnosed before the age of 18 years. There has been an alarming rise in the incidence of youth-onset type 2 diabetes, especially in our American Indian and Black populations. The ADA has labeled this “an awakening epidemic” (Figure 3). I want to use this opportunity to make a plea to you, the readers.

I was fortunate to be involved in the TODAY (Treatment Options for Type 2 Diabetes in Adolescents and Youth) Study, an RCT of three interventions with children and adolescents with youth-onset type 2 diabetes (18). After the RCT, many participated in TODAY2, an observation-only follow-up study, in which they were assessed annually. I highlight this because these individuals, who are now young adults, are really in trouble. Compared with adult-onset type 2 diabetes, youth-onset type 2 diabetes is associated with significantly poorer health outcomes, with earlier onset of serious complications.

The numbers are alarming. Cumulative incidence data gathered when the TODAY “kids” were young adults and had already had type 2 diabetes for a mean of 13 years show that 67.5% have hypertension, 51.6% have dyslipidemia, 54.8% have diabetic kidney disease, 32.4% have nerve disease, and, as of 2018, 51% have retinal disease (compared with 13.7% with retinal disease in 2011). Overall, 60.1% have at least one diabetes-related complication, and 28.4% have two or more complications (19). These data were gathered when the cohort was a mean of 26 years of age, and it is plain to see that their future health is seriously endangered, with early comorbidities and complications, significantly impaired quality of life, and likely early mortality.

We were also fortunate to be funded by the NIDDK for the TODAY2 iCount Study, an ancillary study of the TODAY2 cohort. The primary aims were to identify psychosocial factors that predicted medication adherence and health care usage in this vulnerable cohort of young adults with youth-onset type 2 diabetes. We chose these two outcomes based on the assumption that seeing a health care provider and taking one’s medications are basic behaviors required to achieve and maintain optimal health.

The measure we used to assess adherence to oral medications was unannounced telephone pill counts. We chose this option because it has been shown to be rigorously valid and reliable (20–23). We used self-report to assess adherence to insulin therapy for those using insulin. We defined low adherence as taking <80% of pills, a commonly used, though arbitrary, cutoff. It is important to point out that low adherence is not a judgment. These individuals may not have been taking medications because they lacked funds or had no doctor to prescribe medications or because they did not think they needed medicine. For whatever reason, we found that:

• 65.5% of participants were low-adherent to oral antihyperglycemic medications, and, of these, 23% were taking nothing.

• 80.1% of participants with hypertension and/or nephropathy were low-adherent to antihypertensive medications, and, of these, 68% were taking nothing.

• 93.8% of participants with dyslipidemia were low-adherent to lipid-lowering medications, and, of these, 84% were taking nothing.

It is also noteworthy that >25% of participants had no regular provider of diabetes care. And, although adherence to insulin therapy (but not to oral medications) predicted A1C, the A1C of participants who were high-adherent was still very high. Those high-adherent to oral agents had a mean A1C of 9.2%, and those high-adherent to insulin therapy had a mean A1C of 10%.

In terms of psychosocial predictors of medication nonadherence, we found that beliefs about medicines (e.g., that medicines are harmful, overused, or addictive) and unmet material needs (i.e., social determinants of health) predicted medication adherence at the 1-year follow-up, and these factors, as well as diabetes distress, limited support for self-management, and lower diabetes self-efficacy predicted A1C. For further details, readers are referred to some of our iCount Study publications (24–29).

So, what is going on here? Youth-onset type 2 diabetes may be a more virulent form of the disease. Also, low medication adherence and low adherence to other key self-care behaviors likely play a role in these highly concerning outcomes. Also, health care provider inertia and hesitancy to prescribe may be factors. Certainly, low socioeconomic status and high prevalence of unmet material needs play roles, with 82% of our sample having an annual income <$35,000, 46% reporting food insecurity, 36% reporting medication insecurity, and 75% reporting at least one unmet material need.

My plea to the readers is that attention must be paid to this highly vulnerable group. Many of these young adults are already quite ill, and their future health is at significant risk. Additionally, type 2 diabetes continues to be diagnosed at alarming numbers in children and adolescents (30). We must find ways to diagnose these young people earlier and develop efficacious interventions for this unique and highly vulnerable group.

OK, that ends my digression. Before it began, I was focusing on the importance of relationships and had highlighted their importance for our work with people with diabetes. Now, let’s turn attention to relationships in our professional life.

There have been several key relationships with bearing on my professional growth that I want to highlight and acknowledge. The first is my relationship with Dr. Ruth Weinstock, who holds many titles at my institution, the State University of New York Upstate Medical University. She is a Distinguished Service Professor; Chief of Endocrinology, Diabetes and Metabolism; Medical Director of the Clinical Research Unit; and, of our Joslin Diabetes Center, a Joslin affiliate. In 2021, she was also ADA President, Medicine & Science.

We met when she was just opening our Joslin Diabetes Center. Her commitment to diabetes research is well known and exemplary. Until then, I had worked primarily as a clinician and educator, but then she began opening small windows for me that allowed me to begin to envision a career in research. She gave me access to interesting data; she funded a statistician so I could develop my early work and publications. She was always positive about my ideas and shared her own generously. Over the years, we have forged a wonderful collaboration, as our individual and shared opportunities expanded. And, we are great friends! I cannot thank her enough.

Another key relationship began as I was standing at my first ADA poster (during the 2 hours of hoping someone will ask you something), when I was introduced to Dr. Richard R. Rubin. I was a bit in awe, meeting the man widely known as “the father of behavioral diabetes.”

“Let’s have lunch,” he said, grabbing two box lunches. We sat on the floor, and he asked me about myself. I shared that I was a relatively new runner but hoped to run a marathon someday. He told me anyone can finish a marathon; you just run a mile, then walk a mile, then run a mile, then walk a mile, and so on. I took this to mean that one should face challenges in manageable chunks and believe you can do it. What great advice, for marathons (I did run several half-marathons) and also for professional growth and, of course, for life.

I didn’t know Richard well, but he invited me to join a small group of psychologists to develop a curriculum for mental health providers to learn about diabetes and become better prepared to help people with diabetes cope with its many challenges. This was an early effort to expand the pool of mental health providers who are skilled in working with people with diabetes, and, although it took some time, it was exciting to see that approach grow into an ADA/American Psychological Association joint initiative a few years ago. Richard was also a mentor who opened some doors for me and, even more importantly, made me feel that I had something to contribute.

So, here is my second lesson: if you do not have a mentor, find one! It can be someone from your own institution or from elsewhere. The ADA’s Women’s Interprofessional Network (WIN ADA) is a great place to find other women researchers and clinicians. If you seek, you will find. And, if you are a more senior researcher, seek out those who are new to the field and offer to help by providing opportunities, guidance, and support. Both mentees and mentors will find these relationships very rewarding.

Richard and Dr. Lawrence Fisher, another key collaborator, invited me to join the Behavioral Research in Diabetes Group Exchange (BRIDGE). The sole activity of BRIDGE is to hold an annual meeting at which established and new researchers share their ideas and data, and the group brainstorms to provide valuable feedback. The ideas we exchanged, and the cheerleading for research I experienced, both at the meeting and through the relationships formed there, led to other collaborations and have been priceless. For international colleagues, there is the Psychosocial Aspects of Diabetes group. These are the basis for my third lesson: if you are not already involved in or do not have access to such a group, I urge you to form one. It can be three people or 30 people, as long as you meet regularly to share, discuss your work, and support one another in a judgment-free zone.

Relationships also play a direct role in research, specifically within research teams. Many readers are likely principal investigators or co-investigators on research studies. These are big jobs; you are the people who secure the grants, oversee the studies, and publish the articles, and I congratulate you. Other readers may be clinical research associates, research nurses, interventionists, statisticians, and research study staff members. We all know the truth that, without you, we would be lost, so I thank you all, sincerely. I have learned the importance of having a cohesive and committed research team. Some members of our Upstate Joslin Center team are Suzan Bzdick and Lynn Agostini, and I would also especially like to recognize Jane Bulger, with whom I have worked most closely. Their dedication and commitment are the solid foundation of my work. This brings me to my fourth lesson: support and appreciate all of the members of your research team. Of course, that’s the right thing to do. But I also strongly believe it is particularly important for research because:

• By caring about the project, the team members promote recruitment.

• By caring about the study participants, they promote retention.

• By caring about each other, they make it all worthwhile.

Finally, we must consider the most important relationships in our lives: our family and loved ones. I want to acknowledge my husband of 52 years, Dr. Joseph Himmelsbach, who is also a clinical psychologist. He is an expert on suicide, a leader in the development of highly innovative programs for inpatient and outpatient treatment in psychiatric hospital settings, and a true champion for people with serious mental illness and developmental challenges. Most importantly for me, Joe is also my best friend and greatest supporter. I thank him for always being there for me. I am also so proud of my three sons, Joshua, Adam, and Daniel, and my new daughter-in-law, Isabel, who are everything.

My purpose in writing this article is to send a simple message: relationships matter.

• For your patients, take time to understand the relationships that are key for them. When you can, engage with their partners and supporters, and help them cope with this challenging disease together. Try to help those who are alone and lonely by emotionally connecting with them yourself and, if possible, helping them connect to others.

• For your career, find a mentor or two or three and consider forming a BRIDGE-type group for mutual collaboration and support.

• For your research, select great people for your research team and then support and appreciate all of them.

• For yourself, love your family above all.

The author thanks her family and all of her mentors and collaborators for their ongoing support; NIDDK for key financial and logistical support; and the many people with diabetes who have shared their stories and struggles and have participated in her research studies.

No potential conflicts of interest relevant to this article were reported.