Creating a National mHealth Aftercare Strategy for Survivors of Pediatric Cancer

Today, most children diagnosed with cancer will survive thanks to amazing advances in the medicines needed to treat childhood cancer. The treatments needed to cure childhood cancer, however, are toxic and can lead to serious medical conditions later in life. Unfortunately, most survivors of childhood cancer are not aware that they are at risk for serious medical conditions later in life. Without this knowledge, survivors can’t advocate for themselves in the health care system. As our population of survivors grows, if we do not help survivors of childhood cancer understand their health care needs, survivors, the health care system, and our communities as a whole are at risk of the burden of these medical conditions.

Interventions to improve the care of survivors are not well developed. Survivors themselves have been missing from the design of these interventions. The overall goal of this project will be to develop a Canada-wide platform to educate, engage, and connect survivors on their health care that is survivor-directed in partnership with researchers, health care professionals and administrators.

This research has been funded by a CIHR Catalyst Grant in Patient Oriented Research and by the Kids Cancer Care Foundation.

A Priority Setting Partnership to Establish a Patient, Caregiver, and Clinician-identified Research Agenda for Adolescent and Young Adult Cancer in Canada

Each year, nearly 9,200 Canadian adolescents and young adults (AYAs) between the ages of 15-39 years are diagnosed with cancer. AYAs are increasingly recognized as an oncology population with distinct medical and psychosocial needs, which are largely unmet and unaddressed in the healthcare system. Following the priority setting partnership (PSP) methodology established by the James Lind Alliance, this PSP will bring together Canadian patients, caregivers, and clinicians to establish a research agenda that will address the unique needs of AYAs with cancer.

The PSP will be governed by an expert Steering Committee comprised of AYA cancer patients, family members, and clinicians. We will be launching surveys to collect and rank research questions deemed important to the AYA cancer community, as well as holding a final priority setting workshop to systematically reach consensus on the top 10 research priorities for AYA cancer in Canada.

For more information, go to www.AYACancerPSP.ca or follow #AYACancerPSP on social media.

This research is conducted in partnership with AYA CAN and has been funded by a CIHR Planning and Dissemination Grant.

Social Competence in Children Diagnosed with Sickle Cell Disease: An Examination of Risk Factors

Sickle cell disease (SCD) is a severe, genetic form of anemia that causes distorted red blood cells. The distorted red blood cells can impact almost every tissue in the body and cause a number of difficulties including pain, risk of stroke, learning difficulties, decreased quality of life and social difficulties. Children who have a diagnosis of SCD do not have as many friends as their peers. Social difficulties are a serious health risk that may be comparable to the health risks associated with drinking and smoking. Yet, we do not understand who is most at risk of experiencing social difficulties. We need to understand this in order to find the best way to treat these social difficulties.

We are currently recruiting children who have been diagnosed with SCD and healthy children who will be invited to participate and complete some tests that will assess aspects of their social function at the Alberta Children’s Hospital. They will also undergo imaging of their brain (MRI) that will aim to see whether there may be brain abnormalities caused by their disease that can be linked to social difficulties. Finally, we will include assessments of teachers and peers to understand social competence across multiple settings from multiple raters.

This research has been funded by a CIHR Early Career Investigator Award in Maternal, Reproductive, Child & Youth Health

Pain in Adolescent and Young Adult Survivors of Hematopoietic Stem Cell Transplant for Sickle Cell Disease

Sickle cell disease (SCD) is a severe, genetic form of anemia that causes distorted red blood cells. The distorted red blood cells can impact almost every tissue in the body and cause a number of difficulties, including pain and decreased quality of life. Recurrent pain is the main reason for SCD-related hospitalization, and patients diagnosed with SCD report their pain to be worse than pain post-surgery and equally as intense as cancer pain. Hematopoietic stem cell transplant (HSCT) is currently the only curative therapy for SCD, but survivors may be at risk for continued pain.

To date, there has been little research that has explored the prevalence of chronic pain among a population of adolescent and young adult (AYA) patients with SCD. The primary goal of this study is to examine the prevalence, predictors, and patterns of pain in AYA survivors of HSCT and their parent caregivers, compared to patients with SCD who have not undergone HSCT and healthy controls.

This study is generously supported by the Sickle Cell Disease Association of Canada.

Internet-Delivered Cognitive Behavioral Treatment for Chronic Pain in Adolescent Survivors of Childhood Cancer

One in four survivors experiences chronic pain after treatment has completed. Youth with chronic pain report increased anxiety, depression, activity limitations, and sleep disturbances. An 8-week web-based cognitive-behavioral treatment for chronic pain (WebMAP) has demonstrated reduction in the pain in youth but has not yet been explored in survivors. The current study explores the feasibility and acceptability of WebMAP for childhood cancer surviors with chronic pain and their parents.

This study enrolls survivors of childhood cancer and their parents into the 8-week WebMAP intervention, with weekly modules on comprehensive pain and lifestyle management strategies, along with support from a clinical psychology doctoral student trained in cognitive behavioural therapy.

This research is supported by the Alberta Children’s Hospital Research Institute (ACHRI) Small Research Grant.

Social Adjustment Difficulties in Survivors of Pediatric Brain Tumor

Children and adolescents who survive brain tumors are faced with a variety of problems that affect the way they live their lives; one of the most difficult roadblocks is limited contact with friends and peers. The reasons why children and adolescents have difficulty connecting with friends and peers is not well understood. The purpose of this study is to begin to examine some of the factors that may be related to social difficulties for pediatric brain tumor survivors.

This study combines social and cognitive assessments with Magnetic Resonance Imaging (MRI) as well as teacher and peer assessments to explore the underlying basis for the social difficulties faced by some brain tumor survivors. The ultimate goal of this project is to understand the cause of social difficulties in brain tumor survivors and potentially use that to develop intervention measures to improve the social outcomes of future survivors.

This study is generously supported by the Alex’s Lemonade Stand Foundation Psychosocial Launch Grant awarded to Dr. Schulte. Alex’s Lemonade Stand Foundation is dedicated to funding childhood cancer research across North America.

Social Adjustment in Survivors of Pediatric Acute Lymphoblastic Leukemia (ALL)

Acute lymphoblastic leukemia (ALL) is the most common pediatric cancer. While the survival rate for ALL has increased over the last several decades, many survivors suffer debilitating health problems, including social adjustment difficulties, which may be in part from toxic cancer treatments. Knowledge about both treatment (e.g., treatment intensity) and non-treatment factors (e.g., mental health) associated with social adjustment are important to inform risk-based screening guidelines and targets for intervention. This study examines some of the factors that may be related to social difficulties for survivors of pediatric ALL or solid tumours.

This study involves social and cognitive assessments, as well as teacher and peer assessments, to explore the underlying basis for the social difficulties faced by some ALL or solid tumour survivors. We hope to inform intervention measures to improve the social outcomes of future survivors of pediatric ALL.

This research has been funded by the CIHR.

We don’t know what we don’t know: Understanding the experiences of Under-represented Adolescents and Young Adults with Cancer in Canada

The health of adolescents and young adults (AYAs) impacted by cancer is significantly compromised compared to the general population without cancer. However, the current literature is limited by the under-representation of AYAs with under-researched social identities, such as those who identify as Indigenous, racialized, living with a disability, and/or 2SLGBTQIA+, which limits the generalizability of existing findings and the clinical practices they inform. This study aims to identify barriers and enablers and barriers to engaging with under-represented AYAs, to inform future recruitment strategies that can effectively increase diverse representation in cancer research.

This study involves interviews and focus groups with under-represented AYAs with cancer, along with community partners who serve academic, clinical, and/or community organizational roles to serve the under-represented AYA cancer community. This study also collaboratively involves patients as research partners in all stages of the study, to provide further insight into the importance of patient partnerships and promote their inclusion in future studies.

This study has been generously supported by the University of Calgary’s VPR Catalyst Grant and Canadian Psychological Association Clinical Section’s 2022 Collaborative Research Grant.