A growing number of childhood cancer survivors have been treated with high-dose chemotherapy. This high-dose chemotherapy places the survivors at risk for cognitive problems, affecting their thinking skills, processing speed, attention, and memory. Downstream effects of cognitive impairment include difficulties with independent living as they transition into adulthood. Currently, there is limited information as to whether cognitive remediation interventions can improve cognitive functioning in childhood cancer survivors. Cognitive remediation is important for teaching effective decision-making and reasoning skills to enhance self-management and self-advocacy, which in turn could result in improvement in other areas, such as employment and independent living. In particular, given the barriers to accessing medical care (e.g., distance to medical center, reliable transportation), Dr. Murdaugh will use telemedicine to deliver this intervention. This study aims to assess the efficacy of a 4-week intervention delivered via telemedicine that teaches strategies to improve decision-making and reasoning skills in cancer survivors between the ages of 10 and 18 years old.

Children with acute lymphoblastic leukemia (ALL), a cancer of the blood, who receive modern therapy have a high likelihood of being cured. A side effect of treatment in some survivors of ALL is lifelong troubles with learning and memory. One part of therapy that may increase the chance of having learning and memory problems is many exposures to anesthesia. Treatment for ALL includes painful procedures for which children routinely receive anesthesia. Understanding the connections between specific anesthesia medicines, their doses, and the length of time they are given and the chances of having learning problems later on will be important for patients, families and clinical teams in making the best choices for anesthesia use.

Brain tumors are one of the most common and deadliest forms of pediatric cancers. Those who do survive may experience late effects including cognitive, emotional, and social difficulties. Additionally, Columbia University Medical Center in New York, New York has some of the highest rates of COVID-19 cases in the U.S. Thus, the children and their families facing diagnoses of pediatric brain tumors, and the health care providers treating them, were faced with incredibly difficult decisions, at a time when the entire medical system was in a state of upheaval, and questions were being raised as to who should be treated and saved. In medicine shared decision making involving parents, children (when possible) and health care providers is recommended in situations where there is not a clear superior treatment, which may be the case for many pediatric brain tumors. This study aims to understand the factors parents, healthcare providers, and the children themselves considered when making health care decisions. This includes how they balanced potential short-term and long-term challenges with quality of life and longevity of life, what information informed their decisions, and how the COVID-19 pandemic influenced the decisions they were making. This information will provide important insight into how decisions are made, particularly in times of heightened crisis. This will make us better able to help families, patients, and children.

Pain is one of the most common and distressing symptoms that children with cancer face. Pain can persist between clinic visits but may not be reported unless the child is specifically asked. Dr. Linder's team co-designed a game-based symptom reporting app, Color Me Healthy, with elementary school-age children with cancer. In the initial test of the app among children receiving chemotherapy, more than half of children's symptom reports included a report of pain. Parents reported that the app helped them better understand their child's symptoms. Children and parents also gave important feedback to improve the app. During the first phase of the study, Dr. Linder will use feedback from children and parents to make important changes to the app to enhance how children report pain using the app and how children's data can be understood by parents and clinicians. In the second phase of the study, she will ask children to use the newly enhanced pain assessment feature and ask how parents and clinicians used children's data to help relieve their pain. Completing this study will allow Dr. Linder to use the app in a larger study to improve pain management and quality of life among children receiving cancer treatment.

We know that mental health and physical health are closely connected. For example, teenage cancer patients who receive bone marrow transplants have high rates of anxiety, depression and other mental health issues, which have in turn been associated with relapse and even death rates. Researchers have recently discovered that the immune system may be an important link between the mind and the body -- psychological stress can create a specific pattern of molecular responses in immune cells, which causes inflammation and may produce poor outcomes in cancer. To see if the molecular response pattern indeed associates with altered immune cell function and with mental health symptoms, Dr. Taylor will study blood samples and quality-of-life surveys that are collected from teenage patients undergoing bone marrow transplant. If we can understand the biology of how a teen's mental state affects the cancer in their body, we can develop better ways to improve both psychological and medical outcomes in these vulnerable patients.

Adolescent and young adult (AYA) cancer patients face depression and anxiety that are unique to their cancer diagnoses. Existing psychotherapies that work well for general depression and anxiety do not work effectively for the AYA population. Untreated psychological stress and distress (like depression or anxiety) will result in young patients' non-compliance to medical treatment, low quality of life among others. These psychological challenges stand in the way between these patients and a successful recovery. Therefore, as the recipient of the Julia's Legacy of Hope St. Baldrick’s Supportive Care Research Grant, Dr. Zhang is developing and evaluating a computer-based cognitive behavioral therapy that is specifically tailored for AYA cancer patients. Results of this study will improve the treatment for AYA cancer patients' depression and anxiety to improve their medical compliance and quality of life.

This grant is funded by and named for Julia's Legacy of Hope, a Hero Fund that honors her positive, courageous spirit and carries out her last wish: "no child should have to go through what I have experienced". Diagnosed at 16 with Ewing sarcoma, Julia fought cancer and survived only to be stricken by a secondary cancer as a result of treatment. Her family hopes to raise awareness and funds for research especially for Adolescent and Young Adult (AYA) patients.

Retinoblastoma, a highly curable cancer of the eye, is associated with many long term difficulties due to the effects of therapy. Carboplatin is an important drug for this disease but its effects on hearing loss have not been studied in depth. Certainly, children already compromised in vision will be substantially impacted if in fact they acquire hearing impairment. Recently, a consortium of thirteen retinoblastoma treatment centers have been assembled to study the health problems of hundreds of patients with this condition. This consortium investigates the long term toxicity experienced by these patients from their cancer condition, and also examines how the long term side effects impact both the intellectual function of these children, and their quality of life. Dr. Hayashi is working to clearly define the nature and scope of hearing loss in this patient population and the impact of this hearing loss on the overall well-being of the child. With this information, he hopes to advance efforts to minimize the long term hearing loss of these children, but also to provide interventions in the future to optimize the health and well-being of those patients already impacted by their therapy.

Many chemotherapy drugs used in childhood cancer have the potential to damage peripheral nerves and thus may impact a child’s ability to function. Early detection of this nerve damage is important to tailor treatment plans and initiate rehabilitation interventions. Currently, no measure of chemotherapy-induced peripheral neuropathy (CIPN) exists that is appropriate for use in children ages 1-4 years, an age group that is more commonly impacted by a number of childhood cancers. Thus, Dr. Gilchrist is finalizing the development of a scale of CIPN specifically tailored for young children that focuses on eliciting responses to test nerve function (such as tendon reflexes and strength of muscle groups) as well as developmentally appropriate measures of motor function (such as grasping an object or standing on one foot). She is also comparing results from 25 children ages 1-4 years being treated for cancer with neurotoxic treatments and 25 age and gender-matched controls to determine if the measure is both reliable and valid. If successful, she will be able to provide an objective measure for this common treatment side-effect that should positively impact both research and clinical care for these young children.

With increased survival for children with cancer, efforts that prevent long-term health problems are important for improving the quality of life and life expectancy of these children. Diet and fitness are two critical factors for healthy survivorship, but interventions for survivors of childhood cancer have had limited impact, focus almost exclusively on physical activity, and often exclude caregivers, the primary nutrition gatekeepers in the home. Although research supports a key role for the gastrointestinal (GI) microbiome in regulating weight and health outcomes, no studies have examined the “obesogenic” microbiome in the context of interventions for these survivors. Harvesting Hope for Kids (HH4K) is a unique, biobehavioral lifestyle intervention delivered over 8 weeks during the summer in a university-based, cancer survivor garden. It was adapted from a successful intervention for survivors of adult-onset cancer, with pilot data supporting its feasibility in children. In line with St. Baldrick’s mission to improve outcomes for children with cancer, this randomized controlled trial is evaluating the efficacy of HH4K to improve dietary and physical activity patterns in 40 survivors of pediatric cancer (i.e., ages 8-12; < 2 years off treatment). Results will support a larger, multi-institutional trial and improve survivorship care to prevent costly, long-term morbidity.

Despite cure after cancer, the majority of childhood cancer survivors are diagnosed with chronic health problems such as diabetes, hypertension, or heart disease within 30 years of cancer diagnosis and treatment. Hypertension and diabetes are important health problems associated with heart disease and result in early death compared to survivors without heart disease. Compared to siblings, childhood cancer survivors treated with radiation have a higher risk of developing diabetes at a young age. Even though important, the reasons for developing diabetes in cancer survivors are poorly understood. Insulin is an important hormone and affected by cancer treatment. Dr. Mostoufi-Moab is for the first time examining cancer treatment effects (radiation vs. chemotherapy) on making insulin and breaking down blood sugar in childhood cancer survivors, age 15-30 years. She will use tests to measure glucose breakdown, insulin secretion, and mathematical modeling to evaluate the body's handling of fat, all important steps for understanding the why cancer therapy causes diabetes in CCS. Understanding the steps leading to diabetes will help doctors chose the correct treatments for diabetes and for scientists to test options to prevent diabetes in cancer survivors. Achieving these goals will improve quality of life and avoid early death due to cancer treatment-related conditions in childhood cancer survivors.

Pediatric brain tumor patients are at risk for deficits in cognitive functioning, including attention, memory, and processing speed. Evaluation of these functions by neuropsychologists is important for connecting patients with appropriate interventions to reduce academic or vocational difficulties. Despite the importance of neuropsychological services, traditional assessments are time consuming and costly for both providers and families. As such, neuropsychological surveillance is often limited. Due to advances in technology, computerized neuropsychological batteries were developed that can be completed via internet in the home. As the recipient of the Grace for Good Fund St. Baldrick's Supportive Care Research Grant, Dr. Raghubar is determining if children diagnosed and treated for brain tumor can successfully complete web-based tests. Patients currently receiving annual neuropsychological evaluations will be asked to complete a web-based battery. She will evaluate 1) the rate of successful completion; 2) the relationship between performance on the computerized and traditional neuropsychological tests; and 3) the degree to which patients are similarly categorized as demonstrating impaired versus non-impaired neurocognitive abilities when assessed using either form of assessment. This line of research has the potential to improve the clinical care of patients and survivors. She may also find a solution to the problems that have plagued late-effects research for decades, such as poor participation and high dropout rates. This grant is named for the Grace for Good Fund in honor of Grace Carey and celebrates her survivorship from medulloblastoma. While Grace handled her treatments with minor setbacks, she now faces challenges wrought by the very medications and procedures that saved her life. This fund was inspired by her desire to help other kids with cancer and supports research of brain tumors and the multitude of challenges facing survivors post treatment.

The survival rates of pediatric cancers have dramatically improved over the past 40 years due to aggressive treatment regimens, which have side effects. Anthracyclines are one class of chemotherapy drugs that have been used to treat more than 190,000 childhood cancer survivors but cause risk of cardiovascular disease. Connecticut Children's team of oncologists, cardiologists and endocrinologists has developed a clinical practice guidelines to prevent and recognize early cardiovascular disease in pediatric cancer survivors. Dr. Orsey is testing their scoring system among childhood cancer patients from a database and in the clinic. She anticipates that the scoring system will allow doctors to standardize the way they treat patients so that cardiovascular disease is prevented or recognized and treated early in order to decrease heart disease in childhood cancer survivors.

Children and adolescents with cancer and their families are at increased risk for psychosocial problems that can contribute to poorer health and quality of life, and it has been recommended that pediatric cancer centers develop programs to screen patients and families for psychosocial risk. The majority of pediatric cancers centers do not have practices in place to effectively and routinely screen all patients and families for psychosocial difficulties, with time and resources being acknowledged as barriers to implementation. Dr. Gilleland Marchak is developing a novel, patient-friendly technology to screen for psychosocial risk and evaluating its use at a large pediatric cancer center. Study outcomes will include data related to feasibility and acceptability of electronic screening, as well as efficacy in identifying families in distress and connecting them with family support team members to address problems in real time. By successfully leveraging technology to reduce barriers to universal psychosocial screening, we can improve communication between oncology providers and families regarding critical mental health, neurocognitive, and social issues that may negatively impact pediatric cancer treatment and health outcomes.

Children treated for leukemia often have difficulty with school and learning. These children are also known to report sleep disturbances. With the MaxLove Project Fund St. Baldrick's Supportive Care Research Grant, Dr. Ruble is measuring sleep with a home monitor, and testing survivors for specific learning difficulties. She will then examine the relationship between sleep and cognitive function in this population. Dr. Ruble hopes in the future that this will allow researchers to design treatments for sleep disturbances that will ultimately help with learning and school. The MaxLove Project Fund honors the survivorship journey of Max Wilford who was diagnosed with a brain stem tumor at the age of four. Despite several surgeries and an intense treatment protocol, Max is now able to be a “regular” kid due in large part to integrative therapies he received.

Children diagnosed with brain tumors and their parents have many challenges when there is little hope for a cure. Research shows that children who have an incurable brain tumor and their parents are stressed, less happy with their lives, and in poorer health when compared to healthy children and their parents, yet no known helpful coping strategies have been developed for this brain tumor population. Mindfulness exercises are a type of coping tool that help people pay attention to the present moment and handle difficult emotions that come up when facing very stressful life events. In particular, mindfulness exercises have been shown to improve quality of life in children and adults with terminal illness.

With the MaxLove Project Fund St. Baldrick's Supportive Care Research Grant, Dr. Allen is evaluating a new coping program using age-appropriate mindfulness activities to improve the quality of life of children diagnosed with an incurable brain tumor and their families. Coping interventions are greatly needed for this population. The MaxLove Project Fund honors the survivorship journey of Max Wilford who was diagnosed with a brain stem tumor at the age of four. Despite several surgeries and an intense treatment protocol, Max is now able to be a “regular” kid due in large part to integrative therapies he received.

Cancer-related pain greatly compromises quality of life, and can increase disease morbidity, mortality, and healthcare costs by reducing children's compliance to medical procedures. The burden of cancer-related pain does not end when treatment concludes: many survivors of childhood cancer report cancer-related pain well into adulthood. Thus, there is a critical need for interventions that can reduce pain during and after children's treatments for cancer. Dr. Marusak is testing whether a martial arts therapy that centers around mindful breathing and meditative techniques can reduce pain and the underlying brain mechanisms in young cancer patients and survivors.

Dr. Deatrick is developing family support and education materials for maternal caregivers of young adult survivors of childhood brain tumors to improve their quality of life and quality of life of the survivors. Training in Problem Solving (TIPS) for Caregivers, leverages past research, eHealth, and Bright IDEAS family problem-solving intervention (an evidence-based intervention for caregivers of children newly diagnosed with cancer) to target challenges identified by maternal caregivers to their family management. TIPS is targeted to caregivers with “condition-focused FM” (family life organized around the special needs of the survivor). Using the prototype session developed in partnership with maternal caregivers, Dr. Deatrick will work with them to design the web-based intervention. She will develop other sessions of TIPS and adapt them to technology, which will be used “live” online with a health care provider and online with interactive homework sheets, videos, and other resources. Future research will involve fathers and other caregivers, survivors, and other family members.

Survivors of childhood acute lymphoblastic leukemia (ALL) may have difficulty learning because of problems with attention and working memory caused by the medications they receive during the course of their leukemia treatment. The Georgia and the Peachy Keens St. Baldrick's Supportive Care Research Grant is determining if children would be willing to complete 25 computer-based training sessions (designed as games) over an 8-week period, at home, while they are taking oral chemotherapy medications. These computer games are designed to improve attention and working memory. If this study proves that children are willing to complete the training and participate in short (10- to 15-minute) evaluations of their attention and memory, Dr. Winick will then test this intervention with a larger number of children to see how well it works and how long any effects last. This grant is named for the Georgia and the Peachy Keens Hero Fund which was created in honor of Georgia Moore’s 5th year past her cancer diagnosis. As a leukemia survivor, she inspires others to “just keep swimming” by raising awareness, hope and research dollars.

Adolescents and young adults (AYA) with cancer have an increased risk of developing secondary cancers, cardiovascular, metabolic and bone diseases as well as cognitive impairments, which can reduce their survival and quality of life. Furthermore, most AYA cancer survivors do not meet the recommended guidelines for physical activity. Dr. Nock is conducting a pilot study using 'cybercycling' (stationary cycling with interactive video gaming) to improve quality of life in AYA cancer survivors. She will also see if this exercise program improves their motivation to exercise, body composition (weight, body fat), fatigue, depression, and sleep habits.

Young age at diagnosis and intense therapy result in multiple late effects for Neuroblastoma survivors. The majority of High-Risk Neuroblastoma HR-NBL survivors have striking growth failure. Dr. Mostoufi-Moab is investigating the mechanism of growth failure in high-risk neuroblastoma survivors. Dr. Mostoufi-Moab is employing state-of-the art imaging measures of the growth plate to study and understand the mechanism of growth failure in high-risk neuroblastoma survivors, and target future intervention trials.