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.
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.
We have finalized a symptom screening tool for children receiving cancer treatments who are 8 to 18 years of age. However, we do not have adequate approaches for symptom screening in younger children. We are developing symptom screening tools which can be used by parents for children 2-7 years and by children themselves who are 4-7 years. English-speaking parents of children 2-7 years receiving cancer treatments and their children 4-7 will be asked to participate. We will examine these two versions (parent and child completed) to make sure they are good ways to measure symptoms in younger children. The earlier we identify that a child is suffering and know the reason, the earlier we can give effective treatments.