Fairly simple adjustments to treatment plans can make a significant difference for a child or young adult with a dual diagnosis of cancer and autism spectrum disorder (ASD), according to Rabi Hanna, MD, Chair of Pediatric Hematology, Oncology and Blood and Marrow Transplantation at Cleveland Clinic Children’s. Yet, there’s not a lot in the literature about how best to provide cancer care for these patients.
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“We’re seeing more patient families seek cancer care at our facility for their children with ASD, in large part due to our collaboration with the Cleveland Clinic Children’s Center for Autism and our comprehensive psychosocial support team,” says Dr. Hanna. “We work together with pediatric psychologists, social workers, child life specialists, and art and music therapists to develop individualized plans based on the needs of each patient.”
Family members are key resources
The hospital isn’t an easy place to visit for most children, and sensory sensitivities and a strict reliance on routines can become particularly troublesome for children with ASD seeking cancer treatment. The unfamiliar faces, smells and sounds of a clinical environment can be overwhelming, leading to potential behavioral problems. Additionally, varying communication skills can exacerbate these issues.
“Family members and caregivers are always the greatest resource when it comes to working with a child who has ASD, because every child is so unique,” says child life specialist Diana Swinehart, CCLS. “We partner with parents to identify potential triggers. After we identify triggers, we work with the medical team to try to figure out what stressors we can remove or dial back in an attempt to make this experience a little bit easier for the patient.”
Dr. Hanna says his team works together with families to establish trust and get to know the patient rather than just the disease. “You really have to tailor your therapy and assessments to each individual patient. Listen to the family, as they will be your best asset.”
Child life specialists work to lessen stresses of treatment
“Our goal is to get to know each patient well enough to develop a new routine for them, and our child life specialists are critical to this endeavor,” Dr. Hanna states.
When a child has a new diagnosis, a child life specialist meets with the family to help the patient understand what’s going on in a developmentally appropriate way, including what it means to have cancer and what treatment looks like, says Swinehart.
“We try to educate over a series of visits to help them understand what everything means. Then we work to lessen the effects of the stress that it might cause, such as fear, anxiety and pain,” Swinehart explains.
The first appointment of the day
Medical appointments and cancer treatment can be very disruptive to established routines. The more predictable a patient’s encounter can be, the easier it is for a child to feel comfortable and safe, notes Dr. Hanna. With all of the issues that can arise over the course of a day in clinic, one of the easiest things that can be done for patients with autism is to schedule them for the first appointment of the day.
This was especially helpful in the case of one patient, Swinehart explains, who needed to be sedated for the administration of chemotherapy. Hunger was a trigger for him, and he really struggled if he had to spend time in clinic without eating first. The hematology-oncology team at Cleveland Clinic Children’s adjusted the schedule so that on days when this patient needed a procedure, he was one of the first cases. They were able to reduce that amount of waiting time when the patient couldn’t understand why he was unable to eat.
Developing new routines
Another patient struggled when the clinic moved into a new outpatient facility. The move and related changes to patient flow were very difficult for the patient, according to Swinehart. “After talking with the family, we realized we needed to reduce the number of transitions. We altered the patient flow so that he went to the same room upon arrival, and all caregivers came to him. The patient and his family used window crayons to decorate the window in the exam room. Pieces of the drawing were left on the window between visits so that the room was familiar the next time he came in. In this case, just minimizing the transitions and allowing him to settle in helped him come to know what to expect during his office visits.”
When it hurts
Children with ASD have communication impairments that may impact their ability to tell caregivers when they are in pain.
“One of the questions we ask patient families is how the patient behaves when they experience pain,” Dr. Hanna explains. “We had a patient who would become quiet and withdrawn. After consulting with the family, we came to recognize this as a signal that he was in pain. In another patient, we noticed that he really liked traffic lights. We started to ask him to tell us about his pain by pointing to the red, yellow or green on a light rather than a smiling face or thumbs up or thumbs down. We strongly believe at Cleveland Clinic Children’s that we treat patients, not diseases, and we will modify our standard care path but still always aim to cure and provide the best quality of life.”
“All these clues come to us as we work with families throughout treatment, and our families are very grateful for the individualized care their children receive at Cleveland Clinic Children’s,” Dr. Hanna concludes.