For decades, many of us have been crying out for medical professionals to do more to help us with the emotional and mental health sides of dealing with diabetes.
It's been a slow burn getting there, but we're finally seeing major national diabetes organizations putting a spotlight on the psychosocial aspects of living with this condition, helping to raise the profile of mental health + diabetes across the country.
In late April of this year (likely timed in conjunction with May being National Mental Health Awareness Month), the American Diabetes Association launched an online provider directory to enable easy searches for healthcare professionals experienced with the psychosocial side of diabetes care. You just plug in whether you need adult or pediatric care and your zip code, and up pop some suggested providers!
While there's been a lot of excitement about this new tool, it also highlights how much is still lacking in this area and the systematic policy changes we still need to improve the mental health care scene for PWDs (people with diabetes).
ADA's Mental Health Database
The ADA partnered with the American Psychology Association to create this new directory. Described as a first of its kind, it reflects more than just an effort to compile a list; it actually includes only those HCPs who've completed new ADA-specific training and certification on the psychosocial needs of PWDs. While the ADA says about 100 were trained in this program, it's not easy to determine if they're all yet listed in the directory at this time.
The database launch provides meat to the ADA position statement issued in late 2016, which "encourages comprehensive, personalized mental health assessment and treatment as part of routine diabetes care." It actually recognizes that healthcare professionals have failed to address this aspect through the years, and makes recommendations on how HCPs can begin to better recognize mental health woes that go along with diabetes. (See the full statement published in Diabetes Care.)
This is a great leap forward, and yet... it's still far from where we should be in this day and age. Some experts point out that the ADA's position statement and most recent 2018 Standards of Care don't delve deeply enough into the behavioral health aspect of diabetes and how to address those issues.
Quite simply: HCPs aren't equipped for this along with everything else they must do, and the demand hugely outweighs the supply here.
Not Far Enough?
In early May 2018, a team of researchers published a follow-up paper illustrating how the ADA's Standards only scratch the surface of this issue. They surveyed health systems where behavioral health professionals (such as psychologists or social workers) have been integrated into the diabetes clinics and systems. Nicole Johnson, who last year became JDRF's national mission director, is leading the charge on peer support and psychosocial aspects.
"The results show we have a lot of work to do to get up to meeting the ADA Standards of Care ideals," she told us, pointing out that most clinics do not employ a full-time person devoted to the psychosocial issues. "With behavioral medicine as such a large part of diabetes care, (that) really shows a lack of commitment and maybe understanding of the significance of the services provided."
Johnson says even more challenging is that of the 22 responding clinics surveyed without any behavioral health professionals on board, only 5 even had a process in place for referring PWDs in need to proper help.
"Not covered in the article are the barriers to integration of behavioral health," Johnson added. "We suspect finance challenges to be amongst the primary issues… reimbursement is still very difficult for mental health / behavioral health providers. This is something that must be wrestled with from a systems viewpoint."
'Best Practices' Needed
Still, the ADA's efforts on this front are creating buzz among the Diabetes Community, and many see it as a win. Dr. Alicia McAuliffe-Fogarty, who lives with T1D herself since 1987 and had served as VP of the ADA's lifestyle management team in 2017, told us: "We have all been screaming about this from the rooftops for years -- that we need more patient-centered individualized care that takes the day-to-day decision-making and stress into consideration."
While she says there are no specific "best practices" being shared among HCPs yet, providers are starting to implement a variety of tactics, depending on their office workflow:
- Some are offering patients written questionnaires and screening surveys to fill out, either at regular office visits or once or twice a year as needed. Those may also be added to a patient's electronic medical record.
- Clinics may use an "integrated care model," bringing on a part-time or even full-time mental health professional to assess psychosocial needs in PWDs.
- The topic is being built into standard conversation between a doctor/educator and patient during an office visit.
- Some clinics around the country are even offering interventional programming, such as online modules teaching PWDs how to weave positive mental health actions into their daily routines.
"It's certainly not going to be a one-size-fits-all with these efforts," McAuliffe-Fogarty says, referring to both the assessment and treatment components.
Meanwhile, the famed Dr. Bill Polonsky, one of the most well-known diabetes psychosocial experts who's worked for decades on this front and created the esteemed Behavioral Diabetes Institute in San Diego, says: "Generally speaking, people in my field are very pleased and gratified by this, as we've been talking about this for decades now... I really want to say, it's about time."
But Polonsky is disappointed by the lack of direction from ADA on how to deal with these mental health issues once they are recognized by the provider.
"Their guidelines are primarily about assessing psychosocial issues, but it's glaring when you look at the statement that it doesn't detail how to treat it," he says. "It's long on the substance that this is an issue, but short on the punchline of what to do about it."
From Credibility to Better Care
Dr. Marisa Hilliard, a psychologist at Baylor and Texas Children's Hospital, points out the importance of ADA prioritizing mental health in diabetes care -- to the point where HCPs can begin to realize that psychosocial struggles are just as important as day-to-day blood glucose management issues.
"In my view, this position statement raises the profile of psychosocial concerns to the level of other medical aspects of diabetes. Increased awareness will hopefully encourage providers to attend to these issues as part of routine care, to reduce the stigma of discussing psychosocial challenges of living with diabetes and to help PWDs and their families get whatever support they need to live most successfully with diabetes."
Of course, Hilliard recognizes the logistical and practical hurdles of putting this into practice within clinics -- becoming familiar with the various screening and assessment tools, knowing what your clinic's healthcare team can actually handle, knowing how to prioritize patients who need more urgent help on the mental health front, and even just being comfortable discussing these oft-complex topics. With limited time as it stands, these conversations can be deeper and take longer, impacting a particular doctor or educator's overall schedule and practice.
"These are real challenges," Hilliard says, "but they can be addressed with multidisciplinary teams that include psychologists, psychiatrists, social workers, counselors, etc. I’ve been pleased to see centers with integrated behavioral health professionals working on solutions to these issues across the country."
At her own center at Texas Children's Hospital, they've hired a full-time clinical psychologist who works exclusively with the T1 and T2 youth and families, collaborating with the rest of the medical team and diabetes social workers, meeting with patients and families, and helping develop screening and referral protocols.
Other similar programs exist across the country -- from Delaware to Chicago to Massachusetts to Oregon and beyond. These represent different examples of how mental health professionals work with medical teams, develop plans for sustainability, and have managed the reimbursement challenge to get paid for their services.
"To me, this is the value of the psychosocial position statement – giving more credibility and legitimacy to these important efforts," Hilliard says. "I am hopeful this will transfer to decreased stigma and increased access to appropriate and effective behavioral health care for PWDs of all ages."
Averting Risk and Moving Forward
The problem wasn't always that providers didn't recognize mental health issues; often, they just didn't know where the best resources are, to refer patients. Thus, the new searchable database.
Interestingly, Polonsky points out that the concept of a centralized directory isn't novel -- he developed one back in the '90s with ADA, but it ended up not being distributed or supported by the organization at the time.
"I worked my ass off compiling that. But after I finished putting it together, the ADA said they wanted nothing to do with it. So, I put it in a drawer for 20 years," he says.
Polonsky believes it may have been due to concern that once ADA provides a psychosocial directory, the organization would be perceived as responsible for the providers listed -- and would appear libel if any turned out to be poorly qualified for the issues at hand.
"It took a long time, but I suppose the lawyers determined it was OK and now we have this, and that's wonderful," Polonksy says.
"The field of health psychology overall is relatively new, and even the FDA looking beyond A1C at quality of life measures is all a part of this," ADA's McAuliffe-Fogarty says. "There are a lot of different people looking at this from the patient perspective who should be included in all the decision-making, and in new clinical trials on the topic."
Yup, we couldn't agree more.