UAB STEP program helps patients with sensory processing challenges

The UAB Medicine Staging Transition for Every Patient (STEP) program helps teenagers with chronic and complex childhood medical conditions move from pediatric to adult health care. Many patients in the STEP program have trouble processing sensory input, a condition that can be triggered or made worse in health care settings. To better serve these patients, the STEP program is creating a care pathway that includes resources designed to reduce sensory overload during hospital or clinic visits.

Sometimes the chaos of a busy lobby, or the bright lights, electronic noises, and cold surfaces of a clinical area can create an unpleasant sensory experience during health care visits. For people who struggle with sensory sensitivity, however, clinical settings can create sensory overload, which may feel overwhelming and unbearable.

The problem is not only a matter of how much sensory information a person receives, but how it is processed. Along with external senses (touch, taste, smell, hearing, and sight), humans have internal senses that include proprioception (awareness of the movements and positions of our body), and vestibulation, which gives us a sense of balance and motion. If the brain incorrectly processes input from any or all of those senses, the results can range from annoyance or overstimulation to extreme suffering.

UAB STEP program helps patients with sensory processing challenges

Removing barriers to care

People with autism often have sensory processing issues. Such patients – as well as those with neurological or developmental issues, post-traumatic stress disorder (PTSD), and other chronic conditions – often respond to sensory overload with behaviors that create barriers to care. They may become agitated, physically overactive, or emotionally distraught, and then they may scream, cry, avoid touch, or fully withdraw. For health care providers, these behaviors can be major obstacles to communication, diagnosis, and treatment. Since a growing number of patients in the STEP program have sensory issues, a special care pathway is being developed.

This pathway is modeled after the Sensory Integration Program and Sensory Pathway, developed by Michele Kong, M.D., a professor of Pediatrics at UAB Medicine and a practicing intensivist at Children’s of Alabama hospital. Dr. Kong said adapting this care pathway for patients in the STEP program makes sense.

“In 2016, we started this pathway at Children’s in the ED, then expanded to inpatient and outpatient units,” Dr. Kong said. “It’s a strategy and care plan to remove barriers to appropriate medical care for patients who have unique social, communication, and sensory needs. For example, a 12-year-old, non-speaking patient with autism may come into clinic for an upper respiratory tract infection but begins to hit her head. It is important for the providers not to assume that the head-hitting is part of her autism but to determine if that behavior is due to a headache or sensory overload. We wanted to make sure providers had a system in place to ask the right questions and have tools not just to deescalate but also to prevent a patient from being sensory overwhelmed.”

Dr. Kong said there are key components of the Sensory Integration Program that make it successful. Providers receive training in effective ways to communicate and work with patients who have sensory sensitivities. There’s also a “sensory toolkit” that includes noise-canceling headphones, visual cue cards, storyboards, and other helpful items. Modifying patient care areas also can help reduce sensory triggers.

“The program also depends upon early and continuous collaboration with allied medical professionals and patients’ families,” Dr. Kong said. “STEP is the next logical clinic to implement this pathway, because STEP is a bridge between pediatric and adult care.”

Setting up for success

STEP Program Director Betsy Hopson said a main goal of the STEP sensory pathway is to systematically prepare providers to treat patients with sensory issues.

“As we began to see more patients with sensory needs, we saw that having our providers know what to expect was crucial for best care and best outcomes,” Hopson said. “In early 2023, a sensory task force was initiated by UAB Care, a quality improvement group, to look at ways to improve care for these patients. That involves identifying the patient early and then creating an alert in the electronic medical record (EMR) that will indicate that this patient is on the sensory pathway, and that alert goes to anyone who engages with the patient. This enables our teams to see in the health record what a patient’s sensory triggers are, as well what kind of support they need.”

Hopson said they are also devising a plan to notify any hospital staff who do not see the EMR. That includes staff from Environmental Services, Food & Nutrition Services, and anyone else who might interact with patients who have sensory needs. The task force is working with Kulture City, an award-winning nonprofit organization that trains staff at event venues and certifies venues that have sensory-inclusive modifications. Kulture City will assist in creating UAB-specific content for training staff.

“We hope to identify these patients in an outpatient setting and complete the sensory pathway assessment, which includes the patient’s preferred method of communication,” Hopson said. “For example, some may need to have their parents speak on their behalf, or use a communication device, or require a sign language interpreter. The sensory pathway assessment also lists triggers and the supports that we have on hand to help patients with their barriers. This means that neither the patient nor the provider has to worry about any unpleasant surprises. We are taking this to all areas and creating champions for STEP in almost every division and department at UAB. Basically, the sensory pathway sets up all of our providers for success ahead of time.”

Hopson also emphasizes the main reason for establishing the sensory pathway with STEP. “Often, services for people with autism or certain chronic conditions from childhood basically stop when those patients turn 18,” she said. “We are really working toward establishing a universal design and learning from the success of Dr. Kong and Children’s of Alabama, so that no matter what your medical condition is, you can expect to see the same level of care at any facility within UAB.”

Click here to learn more about the STEP program at UAB Medicine.

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