Better Serving Patients With IDDs

"The lifespan of those with IDDs has been extended due to better medical care and more awareness," says Allen Wong,  DDS, EdD, a professor and director of the advanced education in general dentistry (AEGD) program at the University of the Pacific Arthur A. Dugoni School of Dentistry and the immediate past president of the American Academy of Developmental Medicine & Dentistry (AADMD). "In the mid-1900s, the average lifespan of individuals with IDDs was closer to 40, but now, it is closer to 60. It was common for pediatric dentists to treat adults in the IDD population; however, about 10 years ago, the specialty redefined itself as an age-defined specialty, and there were very few referrals in the adult sector."

The transitioning of aging patients with IDDs from pediatric to general practices is becoming a huge problem that often results in neglected routine and preventive care due to the lack of general practitioners with appropriate training. The outcomes for these patients can include multiple extractions, emergency room visits, and in some cases hospital stays, which represents a significant disparity in care.

Meeting the Need

According to some experts, this situation is due in large part to a lack of related education in dental school programs. There are exceptions, however, including at the University of the Pacific, which has educated students in this area for about 15 years, and at the University of Pennsylvania, which has constructed a new facility specifically for this purpose. "I am proud of our faculty leaders who have stepped up for so many years to train our students and residents to care for people with IDDs," says Nader Nadershahi, DDS, MBA, EdD, dean of the University of the Pacific Arthur A. Dugoni School of Dentistry. "It is a reflection of the school's humanistic approach to dental education and our deep commitment to caring for people from all walks of life and circumstances."

Nadershahi notes that, in 2019, the Commission on Dental Accreditation (CODA) mandated that all US predoctoral dental education programs provide education to students regarding the management of patients with IDDs starting in 2020. "More dentists must be trained for hospital dentistry as well," he adds. "The American Dental Education Association (ADEA) is actively working on this with the goal of creating an infrastructure to serve this community." Nadershahi is the chair-elect of ADEA, which aims to partner with other corporate and nonprofit partners in building new resources to support dental schools in expanding this type of training. "As dean of the University of the Pacific Dugoni School of Dentistry and chair-elect of the board for ADEA, I am excited that we are working to partner with other organizations to increase visibility, enhance education, and create resources to help providers meet the needs of individuals with IDDs," he says. "We are committed to continuing our work with colleagues at other organizations to raise the bar nationally regarding education and care for the IDD community. This work must include a broad group of providers, patients, advocates, and others. Collaboration is key and will ultimately create equity and lead to better health outcomes for people in society who are often overlooked."

Education for All

At the University of the Pacific, through the leadership of Wong, as well as Paul Subar, DDS, a professor at the Arthur A. Dugoni School of Dentistry and the director of the school's Special Care Clinic/Hospital Dentistry Program, the focus has been to integrate education on treating patients with IDDs for all students and AEGD residents. That includes didactic education as well as clinical exposure in a San Francisco, California, outpatient hospital, an AEGD clinic in Union City, California, and in other local hospitals. The approach enables comprehensive, integrated, and easily accessible care for IDD patients.

In the past, IDD education was largely relegated to postdoctoral education, particularly for the pediatric specialty or AEGD or general practice residency (GPR) programs. For predoctoral education, many patients with IDDs had been screened out when the cases were complex or advanced care was needed. In addition, it was believed that the long wait times of novice practitioners were not a good fit for those with special healthcare needs. "Our program at the University of the Pacific was born out of necessity," Wong says. "We had an AEGD program housed at the San Francisco site that we had to close for financial reasons. Running it was not cost neutral, and the decision to close was heartbreaking. The administration was determined to support the endeavor to continue providing care to those with special healthcare needs. Dean Nader Nadershahi has helped to bring awareness and support for educating our future oral healthcare providers."

Because the program had a hospital dentistry component and several patients with special healthcare needs, a special care clinic was established so that a senior dental student rotation could continue to provide dental care to those with IDDs in a controlled and mentored environment. Wong notes that the design of the new special care clinic at the University of the Pacific encompasses quiet rooms, large working spaces that meet the accessibility standards of the Americans With Disabilities Act, and an area where faculty can mentor students. "We were able to create a smaller clinic with less noise and a more intimate setting to lessen apprehension from members of our IDD population and mentor senior dental students for a weeklong experience of providing dental care as well as a rotation in hospital dentistry," he says.

A curriculum and experiential learning were added into the special care program, and expanded case-based learning was added into the dental curriculum for students in their junior year. "We now have an AEGD residency program based out of Union City that emphasizes special healthcare needs and prevention," says Wong. "Residents from the AEGD program rotate to the San Francisco site to learn and help mentor senior dental students, and the AEGD residents are also taught to treat patients with special healthcare needs in the hospital in both inpatient and outpatient settings."

According to Joel Berg, DDS, MS, a professor emeritus of pediatric dentistry at the University of Washington School of Dentistry, over time, there's been an upgrade in education about treating patients with IDDs in predoctoral programs as well as at the postgraduate level. He notes that at the postgraduate level there's never really been a deficit in working with IDD patients; however, not everyone has postgraduate education. "As the number of people who seek postgraduate education in dentistry grows—even if it's a 1-year AEGD or GPR program—these programs need to include a significant component of training regarding people with disabilities and how to manage them," he says. "Some states require a fifth year of education beyond dental school to get a license. If postgraduate programs include training for patients with IDDs, everybody in those states is going to have that training."

The New York University College of Dentistry has a gorgeous new multimillion dollar facility for people with disabilities that is mainly for adults. "Pediatric dentistry already manages this across the board, but now it's going to get a lot of awareness and attention in general dentistry. One of the school's goals is to train all of its dental students better," says Berg. "That, in addition to the new CODA requirements, will upgrade the capabilities of the dental profession as we move forward. However, the real issue now is not so much about the new dentists who will be trained, but more about the ones who are already practicing and the need to improve their awareness and get their skills up to date."

Confidence Through Exposure

At the University of Pennsylvania School of Dental Medicine, students receive didactic instruction in treating patients with disabilities as well as training and exposure in a newly opened facility called the Care Center for Persons with Disabilities. The center's Personalized Care (PCare) Suite is dedicated to providing comprehensive dental care to patients with disabilities, whether they be physical, cognitive, intellectual, or medical.

"What makes us a little bit different than a lot of other school-based facilities is that the dean, Mark Wolff, DDS, PhD, has made a commitment that the fourth-year dental students spend a half a day per week providing care in the clinics with the thought process that one of the major reasons that there is such a huge access to care problem is that unfamiliarity results in clinicians' fears that they don't know what to do or that they're going to hurt the patient," says Miriam Robbins, DDS, director of the Care Center for Persons with Disabilities at the University of Pennsylvania. "If we give the dental students ample exposure to learning how to provide care or modify care for these patients, when they go into practice, they will be more willing to provide that care."

For those who are already practicing dentistry, the University of Pennsylvania has a free online program underwritten by Delta Dental of Michigan. It includes a free online lecture series on topics designed to bring practitioners up to speed to treat patients with IDDs. "We have an in-person, hands-on immersive experience where clinicians and their auxiliary teams spend 3 days working alongside faculty in our PCare clinic so that we can demonstrate some of the techniques and modifications that we use," Robbins says. "For about 75% of patients with disabilities, only some minor modifications are required to facilitate treatment. There is a small subset of patients with disabilities who will require either sedation or general anesthesia for dentists to provide more invasive restorative of surgical care, but many patients can be managed in a conventional dental setting utilizing nonsedating modalities. Part of the solution is just trying to demystify patients with IDDs—to get clinicians to feel a little more comfortable or to understand that it's not a huge shift to take care of these patients."

Robbins notes that the families of patients with IDDs have been mostly supportive but explains that the facility will occasionally get pushback from some parents whose children were previously being sedated for treatment who express concern about why that is no longer happening. "Although we utilize nitrous oxide in PCare, we don't provide intravenous sedation or general anesthesia," she says, adding that the university is in the process of considering constructing a facility for the few patients with IDDs who actually require sedation dentistry. "If someone needs to be sedated, we currently have arrangements to refer those patients elsewhere. We use a broad spectrum of desensitization and behavior modification techniques. Some parents have been quite surprised by what we have been able to accomplish without automatically putting the patient to sleep to do it."

The University of Pennsylvania program has an optimal faculty-to-student ratio, and the students work collaboratively, so patients with IDDs receive a lot of individual care. "We pair the students up so that they're working with a classmate," Robbins says. "I like to say that we do four-handed, six-handed, eight-handed, or however many hands it takes dentistry to provide the best care."

Robbins notes that, although pediatric dentists do a fairly good job of taking care of patients with disabilities, the transition from pediatric to adult dentistry for patients with IDDs is difficult, and many adult patients have a difficult time accessing care. "In Philadelphia, we're working very closely with the Children's Hospital of Pennsylvania to transition a large cohort of patients that are aging out of the pediatric system to adult dental care at our facility," she says.

In addition to issues of access, the families of individuals with IDDs often face greater financial challenges. To help address the affordability of dental care at the University of Pennsylvania, Colgate-Palmolive has supported the program by providing a significant amount of fluoride varnish. "Patients get fluoride varnish as often as needed based on an individual risk assessment without any charge," says Robbins. "In addition, we've implemented a teledentistry program to do supervised oral hygiene in which the students, who are supervised by a public health hygienist, watch on a computer screen while parents or family members provide oral hygiene and correct the techniques being used if necessary. Teledentistry is also being used for supervised fluoride applications after sending the families of patients with IDDs home with a few months' worth of fluoride varnish. "We have the resources to do this because we've received grant money," says Robbins. "There needs to be some major changes in the insurance reimbursement model to better support preventive services."

Patient Management Solutions

Various conditions fall under the umbrella of IDDs, which necessitates the use of different patient management solutions as well as training for the entire dental team in how to have appropriate interactions. David Carsten, DDS, is a dentist anesthesiologist and assistant professor at Oregon Health & Science University who teaches in a general practice residency program that works with a broad range of special needs patients. "My observation is that treating these patients can be very challenging. It takes knowledge and experience," he says. "We often have to work with the medical providers and caregivers to even make care possible, and that takes education as wel—to learn the language of medicine and how to be a colleague."

Carsten notes that one reason that access to care for the disabled is limited is because it is disincentivized. "Patients with IDDs are largely dependent on universities with highly trained people. It can be so regionalized that patients must travel many hours, and oftentimes, there are long waiting lists-in some cases, years—to obtain necessary care," he says. "This situation also tends to make care more aggressive when there is any uncertainty regarding an outcome." According to Carsten, predoctoral training needs to address how private practitioners can discern between what they can handle and what they need to refer. "It also needs to imbue them with a sense of responsibility to either provide care or a direction for the patient," he adds.

In cases in which a patient's condition calls for sedation or general anesthesia at a practice without such services, establishing a relationship with a provider who can do deep sedation/general anesthesia in outpatient settings would be Carsten's first choice. "Doctors call me at times with questions about what to do," he says. "If the behaviors are addressed via anesthesia, most people can do the clinical work. If the behaviors or morbidities are severe, treatment should be delivered at a hospital that has dentists with operating room privileges. Many patients can be served in outpatient settings, however, and an anesthesiologist can make the situation simple."

Carsten explains that an emergency situation may demand passive immobilization, but in other situations, it should only be used when the patient wants it to address involuntary movement. "Without it being a choice, passive immobilization can easily become a lasting trauma for patients with IDDs," he says. "Their fear is often from a lack of understanding but can also be from previous experience. If they cannot understand what is happening and perceive it to be noxious, their natural instinct is fight or flight. Trauma can be deeply imprinted and never forgotten."

Most treatment situations for patients with IDDs call for a lighter approach. "Being respectful and establishing empathetic communication is sufficient with many patients," says Carsten. "For patients who have trisomy 21 or those with higher-functioning autism, we commonly see that they can be treated once we have established a relationship and they understand what is happening up to their ability. They stop being fearful at that point." Carsten regularly encounters patients who have been routinely treated under general anesthesia throughout their lives by pediatric dentists. "We don't know if other ways are possible until we try," he says. "Sometimes, we can connect and shift to a more conventional approach; however, if the patient's level of cognition is low, we may not be able to do dentistry any other way than under general anesthesia."

Carsten emphasizes that creating effective practice workflows to accommodate patients with IDDs requires everyone on the team to understand how to work with them. "They might take longer to treat. It depends on the level of the relationship that's been established and the specific barriers to treatment," he says. "Some issues are physical, such as ones that necessitate transfers or room for a large wheelchair, but other issues are often related to communication. If the patient is uncooperative and exhibits fear with no discernible level of understanding, treatment will likely not be possible without deep sedation or general anesthesia. If the patient is big, strong, and combative, an institutional setting may be the only choice."

Beyond the Hospital

Although many stakeholders agree that for access to care for patients with IDDs to improve, more dentists must be trained for hospital dentistry, many also emphasize that prioritizing the training of dentists to treat these patients in routine settings is important to improve outcomes and limit the unnecessary use of anesthesia. "Before we need more dentists to be trained for hospital dentistry, we need more dentists to be trained to help patients with IDDs stay out of the hospital for dental work," says David Jourabchi, DDS, a PDS Foundation Dentists for Special Needs provider in Phoenix, Arizona. "We need to advocate for behavior management and modification strategies to play a larger part in education curricula and licensure and board examinations. The primary differences of hospital dentistry are in case selection, efficiency, and treatment planning."

Wong agrees. "Inasmuch as there is a need for more hospital dentists, there is a greater need for more emphasis on prevention so that there is less of a need for hospital dentistry," he says. Wong believes that most patients with IDDs can be seen in routine dental settings if properly oriented with techniques, such as behavior guidance, desensitization, medical immobilization, and protective stabilization, to minimize the need for general anesthesia. Furthermore, he notes that many hospitals are reluctant to allow more hospital dentistry cases because of the poor remuneration. "More incentives to providers and hospitals will be necessary for the future as we improve the dental curriculum and hospital and clinical training," he says. "The AADMD has long promoted the notion of instituting a medically underserved status for those with IDDs in order to help alleviate the student loan debt of new providers who wish to practice in this area. In addition, the emerging field of ‘developmental dentistry' will require more local faculty experts and mentors to properly prepare the future providers."

Berg suggests working with state dental associations to identify dentists who are willing to treat patients with IDDs and to create a database that also includes social workers. "I think about how we can combine organized dentistry, continuing education, and academic institutions to solve the problem at the local and regional levels," he says. "I believe that most dentists are willing to treat patients with IDDs; however, they want to know how they can change their workflows in simple ways to make it work. They want to know what their investment will be in terms of time and costs. These dentists understand that it will not be a big moneymaker; they just want to minimize any losses that may occur. For a small number of patients, necessary workflow changes may include having two assistants, scheduling longer appointment times, and spending more time with the family on the phone or inviting them in for a tour."

According to Carsten, when setting up appointments for patients with IDDs with their caregivers, dental office personnel should communicate clear financial arrangements; any preoperative instructions that should be followed; what to expect before, during, and after the appointment; any postoperative instructions, and the knowledge that follow-up care will be available, at least by phone. If it is determined that a patient cannot be managed physically, psychologically, and/or medically, it is necessary to refer outside of the practice. "Most areas do not have adequate access or facilities to address all of the needs of patients with IDDs," he says. "A years-long waiting list is not uncommon. One obvious reason for this is that dentistry is rarely justified by the very high per-hour cost of a hospital operating room. The justification has to go beyond the cost."

Robbins points out that individuals with IDDs represent a large and rapidly growing part of the population that includes geriatric and older patients with cognitive changes as well as patients with mobility issues. "When we think about disabilities, we tend to think of developmental disabilities, such as Down syndrome, autism spectrum disorder, and cerebral palsy, but the fastest growing group of disabilities is actually mobility issues secondary to arthritis, Parkinson's disease, stroke, and Alzheimer's disease," she says. "The 65-and-older group is the most rapidly growing segment of the population. Because this segment is so large, dentists are going to have to see these patients in their practices. Therefore, it is incumbent on the dental schools to provide adequate training and exposure to their dental students, not only for the patients but also for the practitioners."

Advancing Advocacy

In addition to continuing education courses offered by dental schools and other organizations, resources for treating patients with IDDs can also be found through advocacy groups, behaviorists, and special events. "The Santa Fe Group is a think tank of like-minded individuals that was founded to convene key organizations to help improve lives through better oral health," says Wong, adding that the group recognizes the "huge disparity of care" experienced by the IDD population and is focusing its attention toward equity. Wong, a Santa Fe Group fellow, helped coordinate a 2-day pre-event to the California Dental Association's September 2022 annual meeting to "highlight the disparity of care and the joy of treating patients with special healthcare needs" and collaborated with the program to promote IDD education. "The event helped to elevate the conversation, education, and experiences of experts in the field as well as those of the self-advocates," he says.

"As the Santa Fe Group is celebrating 25 years as a catalyst for oral health in the United States and the University of the Pacific Dugoni School is celebrating 125 years of excellence, innovation, and leadership, we were excited to partner with other organizations and community groups to host this special event," notes Nadershahi. "My hope is that following this meeting, we will have a focused discussion at next year's ADEA annual session and then partner with our colleagues at the University of Pennsylvania for a third session to continue the discussion about the importance of care for individuals with IDDs and the development of tools for education and practice."

The first part of this article, An Underserved Population, which was published in the February 2022 issue of Inside Dentistry, provides additional background on the care-related challenges faced by individuals with IDDs, discusses treatment modifications, and explores how adults with IDDs may be successfully transitioned from pediatric to general care.