2022 Grant Finalists
Meet the Phoenix Children’s innovators who are shaping the future of pediatric medicine. These physicians and researchers are competing for Leadership Circle 2022 grant funding to advance their groundbreaking work in fields ranging from psychology to oncology.
Be Our Guest: Modernizing The Psychology Waitlist Experience
Principal Investigator: Carla Allan, MD
Amount Requested: $98,833
What is the problem we’re trying to solve? Imagine that your child has anxiety or depression. Or that you, as a parent, need help managing your child’s behaviors. Since more than 1 in 5 youth meet criteria for a mental health condition in any given year, you’d be in good company (Perou et al., 2013). You decide it’s time to act. You’re ready to get help. You receive a referral from your primary care clinician to PCH’s Division of Psychology. You initiate the process, optimistic that you and your child will receive help. From there, supporting referral documentation is uploaded to our referral system and the waiting begins. As of today, there are over 1,650 families waiting, nearly 100 of whom are categorized as “urgent” or “stat.” These are the only families that receive a phone call from a nurse who offers community resources and other supports to assist the family.
The remaining 94% wait in silence and hope that an outpatient PCH psychologist has the bandwidth to help. Unfortunately, the traditional outpatient service model of psychology in which 1:1 therapy is delivered weekly or biweekly virtually guarantees that most of these families will wait in vain, as the caseload of one of our most clinically productive psychologists is 68 families. After waiting for a year, referrals drop off our waitlist and if they still need help, they must start the process over again from step 1. We currently have 4 outpatient psychologists and we would need to hire an additional 25 outpatient psychologists, an 84% increase, to respond to our community’s needs. This problem is not going away; historical volumes of our waitlist have been above 1000, even before COVID.
Coupled with the fact that untreated mental health conditions do not resolve on their own and typically worsen over the course of development, it is time to invest in new models of care to deliver on PCH’s mission of providing hope, healing, and the best healthcare for children and their families. How are we proposing to solve it? We propose to leverage advances in behavioral science to create and test the efficacy, utility, feasibility, and useability of a novel, scalable, single session consultation, coupled with self-guided online videos and tools to support parents and youth who are waiting for psychological interventions.
Once the content/videos are produced and the self-monitoring tools are developed, they can be launched from patient to-dos, following self-scheduling for the initial single session consultation. The content will last for years and position PCH as a strategic leader in this area. In addition, the supportive videos and web-based data collection tools could be expanded beyond their initial use of supporting families on the waitlist: they could also be used during active treatment, during the gap between inpatient discharge and initiation of community-based resources, during the step-down from active treatment, and perhaps most importantly, as a tool to prevent the escalation into clinical psychopathology.
Digital Phenotyping in Adolescent Idiopathic Scoliosis
Principal Investigator: Jamal McClendon, Jr., MD
Department/Division: Neurological Surgery / Comprehensive Pediatric Spine Center
Amount Requested: $146,150
Adolescent idiopathic scoliosis (AIS), a spinal curvature of 10 degrees or more, represents the most common form of scoliosis with prevalence of 2-3% of the general population. Spinal curvatures may be associated with long-term health outcomes including pulmonary disorders, disability, back pain, psychological effects, cosmetic issues, and reduced quality of life. Success following surgery for AIS is denoted by antiquated, standardized patient-reported outcome questionnaires. These pen-and-paper validated surveys remain the “gold standard method” for capturing outcome data.
At Phoenix Children’s Hospital, our mission is to provide hope and the best possible outcome for children and their families. The current standard of care, paper-based surveys are limited in their scope, only reflect a snapshot in time, and are subject to the experience of the user with paper forms. The questionnaires are unreliable and subject to multiple forms of bias. Furthermore, communication of surgical success relies on accuracy of these surveys; and subject to patient compliance, which may be highly dependent on the desire/willingness to complete.
Innovative technology including ‘digital phenotyping’ (The use of data generated passively by personal electronic devices, such as smartphones, to measure human function in health and disease) collects continuous, instantaneous, objective data through the use of personal digital device usage. Predictive analytics from raw data enhance the ability to demonstrate patient improvement after idiopathic scoliosis surgery. Real-time momentary assessment studies both passive and active behaviors and minimizes the reliance on compliance or participation. Through the elimination of traditional approaches and incorporation of smartphone data, our focus provides rich, statistical analytics identifying the most robust behavior known-to-date.
The adolescent idiopathic scoliosis population represents an ideal cohort who are health, technologically savvy, and historically have a short hospitalization stay after surgery. Furthermore, they have a complication profile that is less than 6% overall. This group of individuals is ideal for studying active and passive physical, biological, and social phenomena.
IGNITE: A Home Monitoring Program for Infants with Cleft Palate
Principal Investigator: Thomas Sitzman, MD
Department/Division: Plastic Surgery
Amount Requested: $147,627
Cleft lip and/or cleft palate (CL/P) are among the most common congenital conditions in the U.S., occurring in approximately one in every 800 births. Infants with CL/P are at high risk of malnutrition due to feeding challenges, which are often complicated by the occurrence of other medical problems or socioeconomic disadvantages. Interdisciplinary care by cleft teams can prevent malnutrition by close in-person monitoring of infant feeding and weight gain. These visits are also effective at supporting caregivers who frequently experience heightened anxiety related to their child’s feeding difficulties. However, frequent in-person visits often pose significant burdens for caregivers, particularly if they live in rural areas or have limited financial resources. These burdens have been worsened by the COVID-19 pandemic which has reduced in-person access to healthcare providers during a vulnerable period for infants with CL/P. Thus, there is a critical need to offer feeding and weight monitoring options for infants with CL/P to mitigate malnutrition risks while minimizing in-person visits and related caregiver burdens.
Our long-term goal is to improve the health of infants with CL/P and reduce the psychosocial distress experienced by their caregivers. For this Leadership Circle grant application, we propose to co-develop the Infant Growth NutrITion fEeding (IGNITE) Monitoring Program for Infants with Clefts together with the team at Children’s Mercy-Kansas City.
The IGNITE Monitoring Program will enable high-frequency monitoring of infants with CL/P, resulting in early detection of problems with feeding and weight gain, early delivery of feeding interventions before infants experience significant growth delays, and the ability to closely monitor response to feeding interventions. The Program will encourage active engagement of caregivers in monitoring their infant’s health, which will increase their self-efficacy and reduce their anxiety. Finally, the Program will reduce the need for in-person clinic visits, improving care for families who live outside the Phoenix area and have difficulty traveling to Phoenix for in-person visits.
Implementation of a daily electronic symptom questionnaire to reduce the readmission rate during initial treatment for Acute Lymphoblastic Leukemia
Principal Investigator: Alexandra Walsh, MD
Department/Division: Center for Cancer and Blood Disorders
Amount Requested: $99,991
Newly diagnosed Acute Lymphoblastic Leukemia (ALL) patients are often readmitted to the hospital during their initial month of therapy. In an analysis of ALL patients at Phoenix Children’s Hospital (PCH), more than 25% of patients were readmitted to the hospital with potential preventable symptoms. We request funding to support the testing of a novel, daily texted symptom questionnaire to patients and families with newly-diagnosed Acute Lymphoblastic Leukemia (ALL) to reduce the preventable readmission rate during their first month of therapy.
Almost one third of all childhood cancer patients are diagnosed with Acute Lymphoblastic Leukemia (ALL), a cancer of the white blood cells. In fact, about 90 patients per year are diagnosed with ALL at Phoenix Children’s Hospital (PCH) alone. Although patient survival has increased over time to >90% at five years, complications of treatment remain significant, especially during the first month of therapy.[2-4] Most children who develop ALL are healthy prior to this diagnosis, but at the time of presentation they have had days to months of worsening fatigue, weight loss, pain and fevers. These already ill children are then treated with oral steroids and intravenous chemotherapy medications, both of which lead to a whole range of potential side effects. Many families feel overwhelmed as they adjust to their new reality of multiple medications and new symptoms in their children. Therefore, it is not surprising that many of these newly diagnosed patients are readmitted to the hospital during the first month of treatment for potentially preventable reasons.
At PCH from 2018-2020 among 98 patients with newly-diagnosed ALL there were 55 readmissions of 47 patients during induction, with 10 ICU admissions and 2 deaths. Common reasons for readmission included fever, constipation, pain, weight loss and dehydration. Overall, 23 (43.6%) of these readmissions were deemed likely or possibly preventable. Almost half of ALL patients were readmitted during their first month of treatment, and almost half of these admissions were likely preventable with timely intervention.
In order to decrease preventable hospital readmissions in this patient population, we propose to text families daily with a link to a brief questionnaire with questions about potential symptoms such as medication administration, fevers, bowel movements and etc (see Appendix 1 for proposed questionnaire). Worrisome answers will automatically notify a leukemia nurse clinician. This daily contact with families will allow our leukemia team to prioritize contact with patients who really need the help and focus on symptom(s) of concern. We hypothesize that this daily contact will allow families to feel more connected to their healthcare team, as well as allow the medical team to intervene prior to serious complications leading to unnecessary hospital admissions.
The role of detergents in the pathogenesis of eosinophilic esophagitis
Principal Investigator: Benjamin Wright, MD
Department/Division: Pulmonology, Section of Allergy Immunology
Amount Requested: $149,740
Allergic diseases are increasing at an alarming rate and the environmental causes are unknown. Detergents used in common household products (e.g. toothpaste, dish detergent) may be a key factor in driving disease pathogenesis. The objective of this research proposal is to investigate how detergents initiate allergic disease using a mouse model. This will be combined with a translational approach where we will expose children to regular toothpaste and measure the barrier function of the lining of the mouth. We will also assess detergent exposure/burden using patient samples and correlate the with allergic disease. Allergies are among the most common diseases diagnosed in children at PCH.
This project will open an exciting new area of investigation with diagnostic and therapeutic implications. First, it will provide experimental data that may explain how detergents initiate allergic inflammation. Second, it may identify a modifiable risk factor that can help to prevent and treat allergic disease.
This project is in line with Phoenix Children’s strategic focus on interdisciplinary growth because it aligns clinical research efforts in the divisions of Allergy/Immunology and Gastroenterology with existing basic science research infrastructure at Mayo Clinic Arizona. It is our goal through this expanded collaborative effort to solidify translational research partnerships between Mayo Clinic and PCH investigators to increase opportunities for additional scientific discoveries of clinical import.
We will evaluate success by publication of findings and their translation to clinical practice. Results from each of the aims will be presented at national meetings and published in peer reviewed journals. Preliminary data generated from this project will be used to apply for extramural funding opportunities (e.g. NIH). If our hypotheses are validated they may lead to changes in the way common household and personal care products are manufactured.