IDD and Polypharmacy Risks

Individuals with intellectual and developmental disabilities (IDD) have a 2.5 times higher prevalence of chronic comorbid physical health conditions than adults with no limitations. The chronic conditions most associated with IDD include but are not limited to:

• Psychiatric conditions                     

• Epilepsy                                  

• Asthma

• Dental disease

• Osteoporosis

• Gastrointestinal disorders

• Obesity

And with the increasing life expectancy of the IDD community due to improvements in access to and provision of healthcare and other services, the prevalence of conditions commonly associated with aging also increases, especially diabetes, hypertension, and hypercholesterolemia.

With the prevalence of both behavioral and physical health conditions in this population, the risks associated with polypharmacy rise dramatically. In one study of adults with IDD over age 40, 32% were found to have polypharmacy (defined as 5-9 medications) and 20% were found to have excessive polypharmacy (10+ medications) based on regular use of both prescription and over-the-counter medications. Individuals with IDD in residential facilities had 4 times the rate of excessive polypharmacy vs. community living (group home/independent living), independent of other factors.

Polypharmacy is directly associated with increased risks for adverse drug events (ADEs). In a well-controlled study comparing the proportion of hospitalizations associated with ADEs for adults with IDD vs adults from the general population in the United States, the rate of admissions for the IDD population was almost 2.5 times that of the general population. In addition to polypharmacy, the relevant variables for this admission include impaired cognition, multiple comorbidities, dependent living situation, and nonadherence to medication regimens. While the overall incidence of ADE admissions is low compared to admissions for other ambulatory care sensitive conditions, these findings have important clinical relevance due to the associated increased prevalence in this population of acute conditions such as UTI, respiratory, musculoskeletal, and gastrointestinal conditions—the associated challenges of coordination or communications between different groups of providers. Any single clinician should have access to the patient’s complete medication list, and regular medication reconciliation should take place by the primary care team in collaboration with the patient’s care manager.

The 2018 Canadian Consensus Guidelines on primary care of adults with intellectual and developmental disabilities makes the following recommendations:

• Every three-month medication review for indications, dosing, effectiveness, and ADE risk, involving a clinical pharmacist whenever possible, especially for those medications with drug-organ or drug-drug interactions.

• Educate patients and caregivers about appropriate use of medications, interactions with over-the-counter, alternative, and as-needed medications, and to report potential adverse drug events. Simplify the medication administration routines and recommend appropriate medication administration aids (e.g., dosettes or blister packs) and other needed supports.

• Determine the patient’s capacity and need for supports for both decision making and medication adherence and engage caregivers and care managers whenever possible.

References

Erickson SR, Kamdar N, Wu CH. Adverse Medication Events Related to Hospitalization in the United States: A Comparison Between Adults With Intellectual and Developmental Disabilities and Those Without. Am J Intellect Dev Disabil. 2020 Jan;125(1):37-48doi: PMID: 31877264.

O'Dwyer M, Peklar J, McCallion P, McCarron M, Henman MC. Factors Associated with Polypharmacy and Excessive Polypharmacy In Older People With Intellectual Disability Differ From the General Population: A Cross-Sectional Observational Nationwide Study. BMJ Open. 2016 Apr 4;6(4):e010505. doi: 10.1136/bmjopen-2015-010505. PMID: 27044582; PMCID: PMC4823458.

Sullivan WF, Diepstra H, Heng J, Ally S, Bradley E, Casson I, Hennen B, Kelly M, Korossy M, McNeil K, Abells D, Amaria K, Boyd K, Gemmill M, Grier E, Kennie-Kaulbach N, Ketchell M, Ladouceur J, Lepp A, Lunsky Y, McMillan S, Niel U, Sacks S, Shea S, Stringer K, Sue K, Witherbee S. Primary Care of Adults With Intellectual and Developmental Disabilities: 2018 Canadian Consensus Guidelines. Can Fam Physician. 2018 Apr;64(4):254-279. PMID: 29650602; PMCID: PMC5897068.  

Team-based Service Coordination in Practice: Working with Care Managers

What is commonly called “team-based care” is well established to improve stability and outcomes for individuals with medical complexity, especially including patients with intellectual and developmental disabilities (IDD). The American College of Physicians, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Obstetrics and Gynecology have all reviewed the evidence and endorsed “team-based care” as an optimal model for such special needs populations.

However, what does “team” mean? The nature of the team structure, the roles and responsibilities of team members, and the relationship among team members who may not all have the same organizational affiliation are always challenging when trying to coordinate care for an individual with multiple, diverse disciplinary needs. 

Individuals with IDD often have complex “health resource communities,” meaning those individuals, organizations, entities, and environments (including the patient and their family) that have any involvement or influence—actual, virtual, or potential—on the variables that influence their health and well-being.

In our current systems of practice, the responsibility for the elements of any patient’s care is often apportioned independently among different professional disciplines (primary care and specialist physicians, nurses, therapists, social workers, etc.) who, based on the mental model of their discipline, contributes insights and any related orders or action items.

Unfortunately, when decisions are made in isolation of other members of the patient’s health resource community, it can lead to fragmented and uncoordinated care, adding risk to the patient and family, especially those with IDD.

Even under an interdisciplinary model, teamwork is really “groupwork”: while all necessary domains may be represented, members actually work in parallel on tasks that match their purview; achievement of individual goals among the team members is expected to add up to the groups purpose. 

However, interdisciplinary is not the same as integrated. And the diverse, often complex needs of the IDD community can often stress the capacity of individual providers. As noted in the 2018 National Academy of Medicine discussion paper “Optimal Team-Based Care to Reduce Clinician Burnout,” well-defined team-based care presents a unique opportunity to improve patient outcomes, the efficiency of care, and the satisfaction and well-being of health care clinicians.

High performance goal achievement in environments characterized by complexity and diverse human factors requires sharing responsibility, authority, and accountability among team members. To be successful, this model of collaboration must be based on a belief that the benefits of collaboration will offset perceived costs such as loss of autonomy and territorial control. Then, care delivery becomes a collective enterprise as opposed to a departmental, command and control phenomenon, with active coordination of goals and activities to effectively resolve complex problems that could have dire consequences in the face of failure.

In the symphony, performers use their instruments in collective effort to create a harmonious and moving experience for the audience. Extraordinary collective performance—whether in technology, special forces, or healthcare—is also symphonic: dozens of technical and interpretive experts, each of whom has invested in mastering their specific instrument or craft, come together, subsume their individual identities, and, in a shared effort, are able to create a concordant, goal-directed experience. 

The conductor is not the leader, but serves an essential integrating role, holding the vision for the performance as a whole. Even the most virtuoso players understand they cannot conduct and sit first chair; they respect, trust, and defer to the conductor and listen carefully—not for reaction, but for connection—to their fellow players, because they understand that a solo may be in their hands, but the symphony only exists in the collective effort.

In our current systems of care, a well-trained and comprehensive Care Manager is the ideal “conductor,” serving an essential integrating role, holding the vision for “whole-person” outcomes. Their expertise is orchestrating collaboration and a single focus on facilitating the goal-directed activities of team members.

However, it’s important to understand that there are many different forms of care management. Knowing the specifics of an organization’s care management model will help you make better decisions as to who is on your team for specific patients. For medically complex patients, such as those with IDD, Care Managers should be open to augmenting your staff and engaging in activities that promote access to care. They will also help patients and families navigate the healthcare system, identify, and engage referrals, coordinate and support the management of transitions of care (home/residence to hospital, hospital to skilled nursing facility or SNF, SNF to home/residence), follow-up on emergent or urgent care needs and provide linkages to social and government services, community supports and long-term care, and hold interdisciplinary team meetings. They can also conduct or refer for specialized functional and risk assessments, which can add to the data used in your practice for decision making and quality improvement. That data will be useful to create integrated patient-centered plans of care based on IDD best practices to ensure appropriate access to resources and services, including preventive interventions, safety plans, and necessary equipment.

For example, New York State (NYS) has developed a care management model for the IDD community that is used in the IDD-focused Care Coordination Organizations/Heath Homes (CCO/HHs). The CCO/HH model offers a unique, well-defined and predictable level of service that can offer great value to healthcare services organizations. Care Managers at CCO/HHs and CCO-associated health plans have extensive experience working with individuals with IDD; some are Qualified Intellectual Disabilities Professionals (QIDP). As the primary relationship managers for patients and families eligible for services under NYS Office of People With Developmental Disabilities (OPWDD), Care Managers can serve an “essential integrating function” in your practice. While most health plans offer their own form of care management, some health plans choose to partner with CCO/Health Homes for IDD patients because of their model of care and disciplined performance.

References

Collaboration in Practice: Implementing Team-Based Care. Pediatrics. 2016 Aug;138(2):e20161486. Available from: doi: 10.1542/peds.2016-1486. PMID: 27456515.

Doherty R, Crowley, R. Health and Public Policy Committee of the American College of Physicians. Principles Supporting Dynamic Clinical Care Teams: An American College of Physicians Position Paper. Ann Intern Med. 2013 Nov 5;159(9):620-6. PMID: 24042251.

Mitchell P, Wynia M, Golden R, McNellis B, Okun S,  Webb E, Rohrbach V, Von Kohorn I. Core Principles & Values of Effective Team-Based Health Care. NAM Perspectives. Discussion Paper, National Academy of Medicine, 2013.Available from: https://doi.org/10.31478/201210c.  

New York State Department of Health, New York State Office for People With Developmental Disabilities [Internet]. Care Coordination Organization/Health Home (CCO/HH) Provider Policy Guidance and Manual. 2018 Aug; Ver 2018-1. Available from: https://opwdd.ny.gov/system/files/documents/2020/01/cco-policy-manual-master_acc_1.pdf.

Smith, C, Balatbat C, Corbridge S, Dopp A, Fried J, Harter R, Landefeld S, Martin C, Opelka F, Sandy L, Sato L, Sinsky C. Implementing Optimal Team-Based Care to Reduce Clinician Burnout. NAM Perspectives. Discussion Paper, National Academy of Medicine. 2018. Available from: https://doi.org/10.31478/201809c.

Advance Care Planning and IDD

Adults with IDD have made significant gains in longevity in the last twenty years. Between 2008 and 2017, the average lifespan for adults living with these disabilities (which include intellectual disabilities, Down syndrome, and cerebral palsy) rose more than for adults without IDD. However, there remain disparities in lifespan from other non-disabled adults, with variation by type of disability: individuals with cerebral palsy have a significantly shorter lifespan (23 years fewer than non-disabled adults) than those with primary intellectual disabilities (12 years fewer).

Behavior Management in Practice: Practical Considerations

Individuals with intellectual and developmental disabilities (IDD) may demonstrate behaviors that vary from your neurotypical patients. These can manifest themselves on a spectrum ranging from differences in:

• Cognitive, communication, social, emotional, adaptive functioning, to

• Hyperactivity, impulsivity, routines or stereotypy, mood liability, vocalizations, to

• Physical aggression, self-harm.

Identifying, differentiating, and adapting the response of the practice to what is normative for the patient versus what may require therapeutic intervention is essential to ensuring a non-disruptive encounter. Some patients with autism, for example, use self-stimulation such as rocking, finger flicking or other hand movement, or even pacing to help them concentrate during social encounters that may otherwise be overwhelming. Other patients may regularly spontaneously vocalize in a way that might be associated with pain in another person. The practice needs to accept these behaviors as part of the patient’s person-hood. At the same time, behaviors that are barriers to well-being such as self-harm or impulsive elopement may require assessment and associated interventions.

Most behavior management does not take place in the primary care or medical specialists office, but there are some behavioral techniques that can help practices manage the variations in behavior of the IDD patients.

These techniques are generally called the “common factors” because they are not specific to any one condition but are elements of effective communication skills that positively affect outcome, regardless of diagnosis. They are grounded in three key principles focused on managing complex care and enabling acceptance and commitment to plans of care (including self-management):

• Fostering relationships to improve therapeutic alliances,

• Improving information exchange to support better informed, shared decision making, and

• Increasing patient/family participation in care by responding to emotions through listening and offering acknowledgment, legitimation, empathy, and support.

The “common factors” techniques to be used in practice are grounded in the mnemonic HELP (Figure 1). There is significant evidence that medical generalists can readily apply these techniques in practice with limited training.