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Development of a Website for Pediatric Cancer Symptom Screening and Implementation of Supportive Care Clinical Practice Guidelines
(Investigators: Lillian Sung, Lee Dupuis)

Cure rates for children with cancer in North America have exceeded 80%, in part due to the provision of intensive treatments including hematopoietic stem cell transplantation (HSCT).  Consequently, most children experience severe symptoms and toxicities during anticancer therapy, including but not limited to pain, nausea, fatigue, and mucositis; yet gains in supportive care have not kept pace with gains in survival. 

In part, the high symptom burden experienced by children during cancer treatment and HSCT is attributable to failure to identify symptoms early and to implement treatments known to be effective.  At least two complementary approaches are required to maximize symptom control for pediatric cancer patients: active symptom screening and provision of supportive care according to rigorously developed clinical practice guidelines (CPGs).  This study intends to link these approaches in the form of an integrated website named SPARK (Supportive Care Prioritization, Assessment, and Recommendations for Kids). 

We envision that every child aged 8 to 18 receiving treatment for cancer and HSCT will use the SPARK website to track symptoms using SSPedi.  Healthcare providers will be able to view the SSPedi data, highlighting symptoms most bothersome to the child.  SPARK will invite the child’s healthcare provider to view the evidence-based recommendations that address the symptoms of most concern to the patient.  Healthcare providers will also use SPARK to learn about other evidence-based interventions relating to the general provision of supportive care.  This program of research is designed to create the tools that will facilitate the timely identification of treatment-related symptoms and will connect the healthcare providers with evidence-based recommendations for the prevention and treatment of these symptoms.

 
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Development and Validation of a Pediatric-Cancer Specific Symptom Screening and Assessment Tool
(Investigators: Lillian Sung, Lee Dupuis, Brenda Spiegler, George Tomlinson) 

Cure rates for pediatric cancer are at an all-time high, but the costs of this progress include a high prevalence of symptoms during treatment and chronic health conditions following completion of treatment.  Symptoms experienced vary widely depending on diagnosis and treatment, but in general the symptom burden in children receiving treatment for cancer is very high.  It is important to identify and control symptoms in order to maximize quality of life (QoL) and reduce morbidity.  Furthermore, reduction of symptoms during active treatment may improve future psychosocial functioning. 

Even though children with cancer experience a high burden of symptoms, we do not have a symptom screening and assessment tool currently available.  Active symptom screening and ongoing assessment is likely to be a critical component of successful symptom control.  It is also crucial to emphasize the importance of self-reported symptoms by children as opposed to proxy reports by guardians or healthcare professionals.  As a result, this component of our research program is focused on child self-report identification of symptoms in pediatric oncology and the development of a symptom screening and assessment tool, with the ultimate goal of integrating a fully developed electronic tool with evidence-based guidelines into clinical practice. 

 
 
 
 
 
 
 
 
 
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Defining Treatment Related Mortality in Pediatric Cancer
(Investigators: Lillian Sung, Jason D. Pole, Donna Johnston, Paul Gibson, Carol Portwine, Mariana Silva)
 

Treatment-related mortality (TRM) is an important endpoint for children with cancer.  Outcomes for pediatric cancer have improved remarkably over time; however, many children with cancer still die and cancer remains one of the top common causes of death for North American children.  As cure rates continue to improve, TRM is predicted to become responsible for a growing proportion of deaths.

Describing and identifying predictors of TRM are critically important.  Appreciating TRM versus disease related death is fundamental to understanding the best strategy to improve overall survival.  Correct identification of TRM and disease-related mortality allows for appropriate monitoring of outcomes between trials and over time.  Being able to identify those at highest risk of TRM would allow for the development of targeted supportive care strategies and/or treatment modification.

In spite of the critical importance of TRM, epidemiological investigation into TRM characteristics and risk factors has been crippled by the lack of standardized definition for TRM.  This study endeavours to create a system to consistently designate TRM and TRM attribution as an important step toward improving future outcomes in pediatric practice.

 

Quality of Life, Fatigue, and Family Functioning for Children with Relapsed Acute Leukemia in El Salvador
(Investigators: Lillian Sung, Roberto Vasquez, Soad Fuentes)

In recent decades, outcomes in pediatric acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) have improved significantly in high-income countries (HIC); however, in low and middle-income countries (LMIC), outcomes for initial and relapsed leukemia are worse than in HIC.

Given the poor expected outcome of relapsed acute leukemia in LMIC, it is the quality of life rather than the quantity of life that becomes of particular importance.  Almost nothing is known about the QoL of these children and their experiences.  In order to begin to focus on improving QoL for these children who do not have a reasonable chance of cure, an early step will be to describe their QoL, understand the facets of QoL that are most impaired, and begin to describe which factors are associated with better or worse QoL in this setting.

The primary objective of the study is to describe generic and disease-specific QoL over time for children with relapsed ALL and AML in El Salvador.  Secondary objectives include describing fatigue and family functioning, as well as additional factors associated with worse QoL in children with relapsed ALL and AML in El Salvador.  This prospective observational study is one of the first to undertake this type of investigation, and should be meaningful to a large proportion of children with cancer world-wide.

 

A Randomized Controlled Trial of Individualized Yoga to Reduce Fatigue in Hospitalized Children Receiving Intensive Chemotherapy
(Investigators: Lillian Sung, Tal Schechter, Caroline Diorio, George Tomlinson)

Fatigue is a major problem in children and adolescents receiving intensive chemotherapy for cancer and in hematopoietic stem cell transplantation (HSCT) recipients; however, evidence demonstrating effective interventions for fatigue in children with cancer is scarce and there are no standard approaches for preventing or treating fatigue in this population.  Exercise is an effective intervention for cancer-related fatigue in patients of all ages; however, patients receiving the most intensive treatments may be too ill to participate in a standardized exercise program.  A unique and potentially effective intervention that combines exercise and relaxation is yoga. 

Yoga is an ideal intervention for pediatric patients receiving the most intensive chemotherapy because in these patients the ability to participate in physical activity varies considerably dependent on timing relative to chemotherapy initiation.  Yoga allows the tailoring of an exercise program which is individually suited to that patient at that time point.  Other advantages of yoga are the ability to deliver the program in any location without the need for specialized equipment and the ability to allow a family member to participate with the child. 

This is a multi-centre, parallel-group, superiority and explanatory RCT of individualized yoga for fatigue in children between 8 and 18 years of age who are inpatients receiving intensive chemotherapy.  The primary objective of the study is to determine if a 3-week program of individualized yoga, when compared to an iPad activity control group, is associated with lower levels of reported fatigue, greater overall quality of life, and less systematic opioid use.