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.

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.

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.

Development of a Scale to Measure Fear of Cancer Recurrence in Survivors of Childhood Cancer

Many survivors experience some level of fear of cancer recurrence (FCR): fear, worry, or concern about cancer returning or progressing. However, research has yet to comprehensively evaluate FCR for survivors of childhood cancer (SCCs). Specifically, the degree to which FCR in childhood is experienced remains unknown, and few validated tools exist to measure FCR for pediatric SCCs, greatly affecting progress in this area. Therefore, this study aims to develop a measure of FCR for use with pediatric SCCs.

This study is supported by the CIHR and Alberta Innovates.

Health Related Quality of Life and Symptom Assessment in Patients Diagnosed with DIPG or Recurrent and Re-irradiated Brain Tumours and their Caregivers: A Non-Therapeutic Study

The diagnosis of diffuse intrinsic pontine glioma (DIPG) is a nearly uniformly fatal one, and how these patients may be best supported outside of their traditional medical therapy is not well understood. Also, although many children with other brain tumours are successfully cured of their disease, a substantial proportion of patients suffer disease recurrence and require further treatment. This therapy may involve a repeat course of radiation. Based on retrospective data, re-irradiation may provide palliative and even potentially curative benefit. However, such retrospective data are subject to bias, which may over-report survival and under-report toxicity. Furthermore, we do not know how re-irradiation affects patients’ health-related quality of life (HRQOL).

The goal of this research is to prospectively describe the HRQOL of patients with DIPG and other recurrent brain tumors, and their families, before and after re-irradiation, to more accurately assess the benefit vs. toxicity of this treatment. 

This research is generously supported by a Meagan’s Walk National Collaborative Seed Grant and the Brain Tumour Foundation of Canada.