Maine Groups Improve Care for Patients with Intellectual/Developmental Disabilities

A partnership between the Maine Developmental Disabilities Council (MDDC) and two AHRQ-listed patient safety organizations (PSOs) is helping improve care for patients with intellectual and developmental disabilities (IDD). The group used lessons learned about improving patient safety based on PSO data analysis, then customized tools and training to help providers better serve patients with IDD.

According to MDDC Executive Director Nancy Cronin, M.A., patients with IDD often avoid regular checkups and preventive care because primary care physicians lack experience treating them, which can make the visits incomplete or uncomfortable. The settings where patients with IDD are most likely to receive care bear this out.

“Urgent care and emergency care are the most common care settings for people with IDD, so their conditions aren’t being managed well. Primary care doctors just don’t have the training to care for this population,” Cronin said.

She initiated a statewide effort to improve care for patients with IDD when she realized the scope of the problem. She recruited the Maine Primary Care Association (MePCA) PSO and ECRI and the Institute for Safe Medication Practices PSO to help. AHRQ-listed PSOs collect and analyze data that’s been voluntarily reported by healthcare providers, so Cronin knew the PSOs were a good resource for insights on patient experiences, research, and dissemination of safety solutions.

The group set out to identify what factors influenced patients with IDD to seek care outside of primary care practices in order to help providers address those issues. Their first step was to conduct a preliminary assessment of issues and develop a strategy using AHRQ’s TeamSTEPPS® framework. TeamSTEPPS is an evidence-based system that helps improve communication and teamwork skills among healthcare professionals, boosting patient safety and quality of care.

ECRI’s Andrew Martin, M.S.N., R.N., combed the over four million events within the ECRI and the ISMP PSO database to identify and analyze patient safety events. His goal was to learn what types of events were impacting patients with IDD and how primary care practices responded to those patient safety events. These included events that portrayed uncomfortable interactions between some patients with IDD and their doctors—the type of situations that cause patients to avoid care. Based on this and other factors uncovered during the PSO analysis, the group started a dialogue with patients and clinicians to find out how to improve care.

To support that dialogue, Christopher Pezzullo, D.O., clinical director of the MePCA PSO, introduced another key element to the group’s effort: “Safe Table” events. Dr. Pezzullo described their Safe Table event as a protected forum where participants can feel comfortable discussing patient safety and quality improvement experiences.

After an IDD Safe Table event held in August 2020 for primary care physicians, attendee feedback forms “indicated that they wanted and needed more information about caring for patients with IDD,” Dr. Pezzullo said.

To round out their research, the team also conducted interviews with pediatric specialists, who have the most experience working with patients with IDD. They also talked with patients’ parents, who provided the patient and family’s perspectives.

Based on the assessment, data, Safe Table results, and feedback, the group developed evidence-based solutions to educate and support providers who treat patients with IDD. This included creating a patient safety brief that outlined findings from the analysis about improving care and providing recommendations. The brief also covers considerations such as scheduling, exam room setup, care provision, and staff preparations.

“These small accommodations can make the visit less stressful, so that patients will be more inclined to return to primary care physicians for care,” Martin noted.

The impact of this group effort has expanded. The MePCA PSO now includes the IDD perspective in all of its Safe Table events. For example, a Safe Table on lab workflow and lab errors helped to identify specific concerns of patients with IDD that can now be addressed.

The group is proud of their progress, as well as their evidence-based, collaborative approach to improving care for patients with IDD.

“This project represents the gold standard: the way it should be done using evidence. Not telling doctors what to do through mandates, but having conversations,” Cronin said.