In November, OAR’s Board of Directors authorized funding for seven new applied autism research studies in 2020. These new grants, totaling $275,000, bring OAR’s total research funding to more than $4 million since 2002. This is the third of seven previews to be featured in The OARacle this year.
Children, teens, and young adults with autism spectrum disorder (ASD) are at risk for experiencing a mental health crisis. When a crisis occurs, families frequently turn to acute care services, including the emergency room (ER) and psychiatric hospitalization. In addition to long wait times in the ER, these experiences may include the use of multiple drugs, seclusion/restraint, and care that is often not sensitive to the young person’s developmental needs. In fact, families may avoid going to the ER due to concerns about the lack of developmentally sensitive care.
In his year-long OAR-funded study, A Pilot Study of Outpatient Mental Health Crisis Screening in Youth and Young Adults with Autism Spectrum Disorder, Luther Kalb, Ph.D., assistant professor at the Kennedy Krieger Institute, will test a crisis screening protocol that may prevent crises, reduce costly and restrictive psychiatric placements, and improve long-term outcomes for the child and family.
To test the protocol, Dr. Kalb and his research team will:
- Investigate its feasibility and validity across two specialized multidisciplinary ASD clinics that deliver mental health care
- Determine the prevalence and basic characteristics of youth with ASD who are in crisis
- Analyze the usefulness of the protocol using feedback from parents and mental health providers
The study will use the Mental Health Crisis Assessment Scale (MCAS), which Dr. Kalb and his colleagues developed specifically for youth with ASD in 2018. The MCAS is a 28-item parent report of crisis, which takes five to 10 minutes to complete.
Two specialized ASD outpatient centers will participate in the study. The Center for Autism and Related Disorders at the Kennedy Krieger Institute (KKI-CARD) in Baltimore, Md., serves a large, racially mixed, urban population of youth with ASD. At KKI-CARD, four psychiatrists will participate in the study. The WellSpan-Philhaven Center for Autism and Developmental Disorders (WPCADD), located outside Harrisburg, Pa., serves a mostly rural Caucasian population, all of whom receive medical assistance. At WP-CADD, two licensed social workers and two board-certified behavioral analysts will participate in the study.
Providers will be trained on the operational definition of a mental health crisis and instructed on how to score the MCAS and ways to interact with families based on their responses to the measure.
Dr. Kalb and his team expect 400 patients to participate, 200 from KKI-CARD and 200 from WP-CADD. To be included, the patient must be between 6 and 24 years old, have an ASD diagnosis, and be receiving ongoing mental health care, psychiatric treatment, or behavioral management.
Crisis Screening Procedures
Caregivers will fill out the MCAS on an iPad while waiting for their appointment. The protocol software automatically scores the measure when clinicians enter a code, providing them with this information:
- All behaviors selected as moderate/severe
- The behavior(s) selected as most harmful
- A score for the severity of the crisis
It will also include information gathered outside the MCAS, specifically about recent ER visits, hospitalizations, or involvement with 911/ER/the police. Providers will review the information with caregivers and enter their clinical determination into the device. The determination will be based on a four-point scale:
- None: No presenting problems or risk of injury
- Low: Apparent mental health symptoms, low risk of injury, parents can manage whatever symptoms arise; no imminent risk of crisis
- Moderate: Significant mental health symptoms, some potential for harm to self or others, parents struggling to manage the behavior, at risk for crisis
- High: Severe mental health symptoms, behaviors have or likely will result in harm to self or others, parents need help; in crisis
If a patient scores in the moderate to high range, clinicians will provide a safety and referral plan to help families identify triggers/warning signs of crisis and coping strategies for de-escalation. The plan will also include a list of professional and personal contacts who can help during a crisis and tips on adapting the environment to prevent a crisis.
Caregivers will anonymously fill out a four-item questionnaire after their visit that asks if the MCAS:
- Was burdensome or upsetting
- Provided valuable information for their provider
- Improved communication with the provider compared to past visits
Focus groups conducted with providers will provide feedback on the protocol’s usefulness. Specifically, Dr. Kalb will ask providers if:
- Implementation of the protocol was disruptive to clinical practice
- The software for scoring and reviewing the MCAS was accessible
- The MCAS was helpful for treatment planning
- The MCAS identified specific needs that were previously unknown
- Families found the process confusing or it raised any concerns
Statistical analysis will also provide information on the prevalence of crisis and the characteristics of youth in crisis. This information will enable the research team to examine the factors related to crisis, including demographics and service history (such as visits to the ER and hospitalization).
Ultimately, Dr. Kalb and his team hope the study will demonstrate the value of crisis screening in an outpatient setting by providing information for healthcare providers about their patient’s behavioral health challenges and how caregivers are managing. Having that information will enable more informed treatment plans and open up avenues of communication between caregivers and providers. In addition, the information gathered in the study will be useful to investigators in constructing new crisis care models.
Mental health crises are a challenge for individuals with ASD and their families as well as their communities. This study is a step forward in better understanding the need, feasibility, and utility of outpatient crisis screening and building outpatient models of crisis care.