“I dare say you haven’t much practice,” said the Queen. “When I was younger, I always
did it for half an hour per day. Why sometimes I’ve believed as many as six impossible
things before breakfast.”
—Lewis Carroll,
Through the Looking Glass
Judging from the quote above, Lewis Carroll’s White Queen from Through the Looking
Glass is clearly a very smart lady who knows something about diabetes, because the
advice she gives to Alice could also apply to diabetes. When it comes to diabetes,
though, we not only ask people to believe impossible things, we actually ask them
to do impossible things.
We know that diabetes is associated with serious complications. It has complicated
treatment prescriptions and demanding lifestyle requirements. Furthermore, daily care
for diabetes is done by people with diabetes and their family members. It is not surprising
that diabetes self-care can affect family relationships. And, unfortunately, a person’s
lifestyle and life priorities may conflict with the treatment prescription, putting
that person in a very difficult position.
Our broad goal for diabetes care is to maximize the health and quality of life of
people with diabetes, while preventing complications and minimizing costs. Once complications
occur, the Diabetes Control and Complications Trial (1) showed us that their progression
can be slowed; thus, we can focus on maximizing our patients’ health while striving
to maintain their quality of life.
Importance of Education
Diabetes education and the people who provide it play an important role by helping
people with diabetes and their families find information about diabetes and, importantly,
helping them learn how to use that information. The education process also supports
people as they learn the skills necessary to understand their treatment, integrate
diabetes self-care into their lives, and adapt to the unexpected events and changes
that life may bring.
We learned from meta-analyses starting back in the late 1980s, that education that
includes a behavioral component is the most effective (2–4). We also know that diabetes
treatment requires a health care team; it is not just one individual but many who
are contributing to help support people with diabetes (5,6).
People with diabetes typically experience four distinct phases of living with diabetes
(7,8). Each phase can influence the type of emotional support and the diabetes education
needed at that point in their life.
Phase 1 involves the onset of diabetes and may differ for those with type 1 versus
type 2 diabetes. With type 1 diabetes, the onset can be abrupt—a crisis that requires
rapid learning of survival skills, sometimes while hospitalized. For those with type
2 diabetes, the onset may be slower, more insidious. In fact, some people may consider
the development of type 2 diabetes to be a normal part of aging, particularly if some
of their family members have diabetes.
Newly diagnosed people with type 1 diabetes and their families must quickly come to
terms with living with a chronic disease and the risks for acute complications such
as hypoglycemia and diabetic ketoacidosis, as well as long-term micro- and macrovascular
complications. Those with type 2 diabetes may be facing the need to change lifelong
eating and exercise habits, as well as worrying about future complications. In both
cases, individuals and families may need to acquire information rapidly and to adapt
to demanding prescriptions and self-care regimens. They are losing their identity
as a healthy person and are now becoming a person with a serious chronic illness and
very real risks for future complications.
Once people get used to living with diabetes, they enter Phase 2, the health maintenance
and complications prevention phase. Most people with diabetes reside in this phase.
Our goal is to keep them there for as long as possible, until someone finds a cure.
The focus of treatment and education during this phase focuses on prevention of complications,
medications, and self-care.
This is the time during which people need to consolidate their lifestyle habits and
align them with their health care needs. However, many people during this phase also
put diabetes on the “back burner,” as competing demands and priorities take over and
diminish self-care efforts.
If individuals are in a stressful work environment, if they are trying to raise a
family, or if they are going off to college and meeting new friends and learning new
things, diabetes may be assigned a lower priority in their lives. Life is keeping
them busy enough.
Unfortunately, this state of affairs can usher in Phase 3, when early complications
set in.
This begins a new disease trajectory; suddenly, patients realize they are at serious
risk of losing an important ability. Some people respond to the early diagnosis of
complications by becoming energized; it is their wake-up call to start managing their
diabetes better. Others may respond with a sense of fatalism and increased distress.
They may become too incapacitated to adequately manage their diabetes. Each person
may need a different type of support and education to cope and to maximize their health
and quality of life.
Finally, in Phase 4, complications dominate, and diabetes often again becomes a lower
priority, as patients focus more on the comorbidities and complications that require
more care or cause more pain. Their efforts may shift away from diabetes, and they
may actually have a whole new team of health care providers—physicians, nurses, and
dietitians—focusing on their kidney disease, or their heart disease, or some other
problem other than their diabetes.
Progress and Challenges
The diabetes care community has made some major strides in recent decades. For example,
we have seen from National Health and Nutrition Examination Survey data that 52.5%
of adults with diabetes attained an A1C <7% in the 2007–2010 period, compared to 43.1%
in the 1988–1994 period (9,10). Similarly, between 1990 and 2010, the incidence rates
of several key diabetes complications decreased. These included acute myocardial infarction
(–67.8%), death from hyperglycemic crisis (–64.4%), stroke (–52.7%), amputations (–51.4%),
and end-stage renal disease (–28.3%) (11).
This success has resulted from several factors, including new medications, improved
access to care, more emphasis on prevention, and particularly improved access to diabetes
education. But we still have many people to reach. We need fresh, innovative approaches
to help more people with diabetes better manage their self-care and follow their treatment
regimens so they, too, can realize the benefits of better glycemic control and prevent
complications.
Collaborating and Understanding
Diabetes requires a collaborative approach involving patients, providers, and patients’
families all working as a team and agreeing on treatment strategies. But this assumes
that they are all on the same page. So let’s spend a few minutes talking about diabetes
self-care and what a person with diabetes does every day.
The three main areas of diabetes self-care include healthy eating, getting physical
activity, and taking medications; these are the activities people with diabetes have
to manage every day. To see how they are doing at any given moment, they monitor their
progress by checking their glucose levels. The American Association of Diabetes Educators’
AADE7 Self-Care Behaviors (12) identified three important supports needed to accomplish
these activities: 1) healthy coping skills, 2) problem-solving skills, and 3) behaviors
to reduce risks for complications and comorbidities. At the Joslin Diabetes Center,
we thought it important to add one more: that patients must work with their health
care team because the relationship with the provider team is the foundation of successful
diabetes self-care.
There are two types of goals prevalent in the treatment of diabetes. The first is
medical goals, which are often laboratory based and include such measures as A1C,
LDL cholesterol, and BMI. Medical goals are typically followed prospectively and are
the basis for changes in treatment or adjustments in medications. The second type
of goals is self-care goals, which focus on the activities people with diabetes strive
to do each day to better manage their condition.
Although patients do need to know and understand their medical goals, they depend
on their self-care goals to direct their day-to-day lives and, ultimately, help them
to achieve and maintain long-term health. Thus, people living with diabetes tend to
focus on the daily activities that influence their glucose levels. They target their
self-care goals, whereas their medical care team may be targeting their medical goals.
Thus, patients often have a different focus than the professional members of their
team. As providers, we need to understand patients’ struggles to meet their self-care
goals and respect the emphasis they may place on those, over the medical goals we
track in their clinic records. We need to be mindful of what living each day with
diabetes feels like for our patients.
Factors Affecting Self-Care Success
There are three broad categories of factors that affect a people’s ability to perform
self-care behaviors: internal person factors, external person factors, and external
environmental factors.
Internal person factors include such things as cognitive ability, including memory,
intellect, organizational ability, ability to plan and problem-solve, and health literacy
and numeracy. It also includes motivation, desires, and fears, as well as priorities,
attitudes, beliefs, and life experiences. Within this category, we also find their
cognitive model, how they approach life, what they think about the meaning of things
in their lives, and their coping responses. And we find self-esteem and self-efficacy,
education, and also knowledge and understanding of their self-care plan. There are
also physiological factors, including their comorbidities, complications, and the
existence of depression, anxiety, or other affective issues. These are all personal
characteristics that influence people’s behavior and can influence how they behave
and how they communicate with their diabetes team.
External person factors include not only how much, but the type of family and social
support they have and the intimacy of their family relationships. It includes work-related
stress, as well as how physically active their job is, how much privacy they are afforded
during working hours, and their work schedule. It also includes their income. And,
it includes their relationship with the health care team, as well as whether they
have health insurance and what type they may have. These are all external issues that
can exert great influence over people’s ability to manage their diabetes.
The third category, external environmental factors, includes external factors within
the work environment such as the food choices available during the workday and whether
the employer provides health insurance. It also includes the availability of and access
to appropriate health care. And, it includes community factors such as the culture
and mores of their particular community; the availability and costs of healthful foods
at neighborhood stores; neighborhood safety and access to safe exercise; and the need
to drive versus a walking-friendly locale or the availability of public transportation.
One of the most important internal personal factors related to diabetes self-care
is knowledge and understanding of health information. Each person has a lens for filtering
information based on his or her experiences, perceptions, and attitudes. The amount
of information people retain and how they interpret that information differs from
one person to the next (13–15). The perceived importance of information may shift
as people become accustomed to living with diabetes. The priority assigned to some
aspects of self-care may diminish as other life events and competing priorities become
more important (13).
Another crucial set of personal internal factors include the degree to which they
feel guilt and self-blame regarding their diabetes. We have done some qualitative
studies with patients with diabetes and physicians, in which we asked about their
struggles to meet treatment goals. One such study (16) found that many patients used
self-deprecating language when asked about their struggles in reaching glycemic targets
and discussing self-care. One person said, “That’s the reason I think I can’t reach
glycemic goals. It’s because I’m selfish and I’m lazy.” Another person said, “Because
I think I’m such a bad patient—it’s me that’s the problem.”
In a survey study, we looked at some of the characteristics of >360 patients in good
versus poor glycemic control (K.W., unpublished observations). As shown in Figure
1, we found that for both people with type 1 diabetes and those with type 2 diabetes,
patients with an A1C <7% had lower depressive symptoms, less diabetes-related emotional
distress, less frustration with self-care, and a much higher frequency of self-care
than those with an A1C level >8%.
FIGURE 1.
Characteristics of patients with (A) type 1 diabetes and (B) type 2 diabetes, in good
versus poor control (n = 367).
Another particularly important internal person factor is executive function, which
encompasses a range of adaptive abilities that enable people to analyze information
and carry out plans. Creativity, abstract thought, introspection, attention, memory,
reasoning, planning, problem-solving, and organizational abilities all fall under
the umbrella of executive function; these are the high-level cognitive skills necessary
for adequate diabetes self-care. When someone is attempting to integrate complex self-care
behaviors into a busy life, these skills are extremely important, yet difficult to
learn and difficult to teach.
As part of the survey study of patients coming into the clinic for medical or education
visits, we simply asked patients, “Do you manage time well?”—a yes or no question.
We then looked at the frequency of their self-care behaviors as measured by the Self-Care
Inventory-R (17). We found that those who reported managing time well carried out
more self-care behaviors than those who reported that they did not manage time (65
vs. 53, P <0.001 for people with type 1 diabetes; 64 vs. 55, P <0.01 for those with
type 2 diabetes).
We found similar results for glycemic control, with those who reported managing time
well having better mean A1C results than those who reported not managing time well
(7.8 vs. 8.9%, P <0.001 for those with type 1 diabetes; 8.2 vs. 8.9%, P <0.001 for
those with type 2 diabetes). There were similar findings related to diabetes-related
emotional distress and frustration with self-care, as well, with those in better glycemic
control having lower levels of distress and frustration.
Incorporating Cognitive Behavioral Strategies in Diabetes Education
Based on these and other data, we developed an intervention incorporating cognitive
behavioral therapy (CBT) strategies for educators to use to help patients manage their
diabetes better, with the overall goal of improving glycemia (18). The purpose was
not to have the educators become therapists, but rather to evaluate whether educators
could use these CBT techniques to support patients in their self-care efforts.
In this study, we randomized 222 adults (50% with type 1 diabetes; 50% with type 2
diabetes) to one of three education arms. The experimental education program, Breaking
Down Barriers, was a highly structured group intervention in which the educators were
trained to use CBT strategies such as cognitive restructuring any time participants
expressed self-blame. The second arm was an attention control group, in which participants
received the same educational content using standard group education strategies. Both
groups had the same number of sessions (five 2-hour sessions), the same amount of
homework, and same amount of exposure to educators, and both received very high-quality
education. The third arm received individual education; participants had as many appointments
with a nurse educator and a dietitian as they wanted for 6 months. All classes were
separated by type of diabetes, based on previous work by Smaldone et al. (19).
All participants had an A1C >7.6%, and nearly all had an A1C ≥8%; mean A1C was 9.0
± 1.1%. The average age of participants was 53 ± 12 years; the mean duration of diabetes
was 18 ± 12 years; and the mean number of years of education was 15 ± 2 years. Assessments
were performed at baseline and 3, 6, and 12 months after the intervention.
We found that all arms improved, confirming that diabetes education is effective.
The graph on the left side of Figure 2 shows results for all patients, with each line
representing one of the interventions. A1C at 3 months improved in all three groups,
with the greatest improvements among participants in the intervention group, and,
on average, participants were able to maintain these improvements over time. When
we examined the data by type of diabetes, as shown in the graphs on the right side
of Figure 2, we found that, again, all of the education strategies worked, and participants
with type 2 diabetes responded the best to the CBT-based education, achieving nearly
1 percentage point mean improvement in A1C. Thus, the highly structured CBT-based
education group did very well for individuals in poor control.
FIGURE 2.
Impact of structured education incorporating CBT strategies. Mean A1C levels over
time are depicted for the three intervention groups for (A) all participants, (B)
those with type 1 diabetes, and (C) those with type 2 diabetes. Error bars represent
1 standard error. Reprinted with permission from Ref. 18.
The type of education provided did not affect BMI, and all arms had similar levels
of distress. The number of blood glucose checks and reported frequency of self-care
improved for all groups. Interestingly, more participants who answered “no” to the
question, “Are you an organized person?,” improved their diabetes control in the intervention
arm compared to the attention control and individual education arms. However, for
participants answering “yes” to the question about being organized, there was no difference
in the percentage of people who improved in each of the three arms. We concluded from
this that the CBT-based approach worked best for individuals who were less organized
and worked as well as the other approaches for individuals who were more organized.
A 5-year follow-up of this study is now underway. We are finding that, after 5 years
and with no reinforcement of the education, participants are maintaining their improvements,
although still not reaching target A1C goals.
Lessons Learned
The study described above and many others through the years have taught us several
lessons. Most importantly, we know that individualizing the educational approach is
extremely important. In selecting the most appropriate approach, we must consider
such factors as the type of diabetes each person has, the phase of diabetes each person
is in, and each person’s personal characteristics, including their organizational
and planning abilities and other factors such as whether they also exhibit symptoms
of depression, anxiety, or other affective disorders. Other research from our group
(20) has suggested that the presence of elevated depressive symptoms diminishes how
openly people discuss diabetes self-care with their providers, and strong patient-provider
communication is a key component of supporting people in their efforts to manage their
diabetes.
The Importance of Evaluating New Approaches
Diabetes educators are some of the most creative people in the diabetes care community
and often develop new tools and strategies to use with their patients. For example,
in a project currently underway at the Joslin Diabetes Center, curriculum developers
have created a video to serve as a multi-use educational tool to stimulate discussion
and thus facilitate more active, less passive, classroom sessions. Although the video
is engaging and fun to watch, we do not know yet whether it will motivate people or
affect their behavior. We also do not yet know whether educators will be able to use
it effectively to stimulate discussions about topics such as making changes in dietary
habits. Thus, new tools such as this video need to be critically evaluated to ensure
that they serve their purpose efficiently and effectively. We may believe it will
work, but we will not know until its effectiveness is formally evaluated to assure
educators that people with diabetes will interpret it correctly and will be able to
use the information it provides to improve their self-care and their health.