By L. Lee Dupuis, RPh, PhD; Ania Staszczak, BSc; and Lillian Sung, MD, PhD
- For children with cancer, gains in improving quality of life and reducing treatment toxicity have not kept pace with gains in survival.
- To reduce symptoms and improve quality of life, we need appropriate symptom screening tools and rigorously developed supportive care clinical practice guidelines (CPGs) for children with cancer and hematopoietic stem cell transplant (HSCT) recipients.
- To meet these needs, the authors of this editorial have developed SSPedi, a symptom-screening tool for children with cancer and children undergoing HSCT. They are also developing SPARK, a website to facilitate children’s self-report symptom screening and disseminate supportive care CPGs.
Dr. L. Lee Dupuis
Ms. Ania Staszczak
Dr. Lillian Sung
Consequently, most children experience severe symptoms and toxicities during anticancer therapy.3,4 These symptoms depend on the specific cancer and treatment type but commonly include pain, nausea, fatigue, and mucositis. Symptoms not only affect quality of life and morbidity but also may negatively influence future psychosocial functioning.5 Some supportive care strategies, such as the prevention of infection and treatment of fever and neutropenia, can directly affect survival.
However, gains in improving quality of life and reducing treatment toxicity for children with cancer have not kept pace with gains in survival. There are at least four reasons for this: (1) failure to enable children to self-report symptoms; (2) failure of clinicians to appreciate severe symptoms; (3) failure to develop clinical practice guidelines (CPGs) to address symptoms; and (4) inability to identify and access CPGs once developed.
Symptom screening and provisioning of clinical care consistent with supportive care CPGs have been highly successful approaches to improving clinical outcomes for adult patients with cancer in Ontario. Efforts by Cancer Care Ontario (CCO) have culminated in the wide-spread use of a symptom-screening tool based on the Edmonton Symptom Assessment Scale—a validated tool for adult patients with cancer.6
Furthermore, the CCO and the Canadian Partnership Against Cancer collaborated to develop evidence-based guidelines for managing severe symptoms identified by the tool.7 Implementation of symptom screening has resulted in decreased emergency room visits, and higher symptom screening scores were shown to trigger clinical actions.8,9 Together, these efforts have improved patient outcomes.
However, comparable pediatric symptom screening tools are only now being developed,10,11 and no comprehensive mechanisms exist that facilitate access to trustworthy supportive care CPGs to address the symptoms identified during screening. In fact, few methodologically rigorous pediatric supportive care CPGs exist.
Early Identification and Communication of Symptoms
Active screening and ongoing assessment of symptoms are important. Children undergoing cancer treatment, including HSCT, may accept symptoms as an inevitable consequence of chemotherapy, and they often seek help only when the symptoms become severe.12 It is crucial that children self-report their symptoms instead of guardians or health care providers reporting their symptoms for them. Children’s self-reporting of symptoms, especially subjective symptoms, ensures that each child’s perspectives and experiences are captured and that clinicians and parents are focused on the symptoms most important to the child. Early identification of symptoms also facilitates earlier initiation of interventions to control symptoms.
It is also important to determine the most effective ways to communicate symptom-screening results to children with cancer and HSCT recipients, as well as to their health care providers. Within adult oncology, research on communicating quality of life and other patient-reported outcomes suggests that adults prefer simple line graphs for individual- and group-level data, and they can almost always interpret data in this format.14 However, comparable studies within pediatric populations have not been conducted. Empowering children to understand their own symptom experience will enable them to be more active participants in their own health care and will improve their ability to communicate their symptom experience to their family and health care providers.
Symptom-screening results must also be incorporated into electronic medical records (EMRs) across different platforms. Accessibility and integration into EMRs have been highlighted as important logistic features that influenced the degree to which patient-reported outcomes affected clinical practice.15 But there are many challenges to the routine integration of patient-reported outcome data with EMRs.16
Recognition and Implementation of Effective Supportive Care Strategies
The foundations for translating evidence to practice are CPGs, which are systematically developed statements designed to assist in health care–related decision making.17 These statements facilitate the incorporation of published evidence into the patient care provided by individual clinicians and health care institutions.
It is important to emphasize that only rigorously developed or trustworthy CPGs should be used in clinical practice. Trustworthy CPGs must be based on a systematic review and must include specific elements, such as evidence tables.17 In part, failure to maximize symptom control is related to the limited number of existing trustworthy pediatric supportive care CPGs and poor uptake of those that are available.18
We recently conducted a systematic review to identify pediatric cancer and HSCT supportive care CPGs that meet accepted minimum standards,19 and we identified only five such CPGs published after 2012.20 Unfortunately, CPGs that address most supportive care issues important to children with cancer and children undergoing HSCT simply do not exist.
A limited number of organizations worldwide are creating and disseminating new trustworthy pediatric supportive care CPGs. They have been brought together under the umbrella of the International Pediatric Oncology Guidelines in Supportive Care Network (iPOG). Working collaboratively within this network, developers of pediatric supportive care CPGs are able to minimize duplication and prioritize efforts.
In addition to the few existing trustworthy supportive care CPGs formatted for health care providers, almost no work exists that focuses on how best to provide supportive care information for children with cancer or children undergoing HSCT and their families, including siblings. CPGs explicitly formatted for use by children and family members will acknowledge them as important members of the care team and will provide them with the tools to actively participate in this role.
In a variety of contexts, delivery of care consistent with rigorously developed CPGs can improve patient outcomes.21 But compliance with CPGs is generally poor across different populations.22,23
A study evaluating the quality of care in the United States identified that for acute care in general (not restricted to cancer), on average, 30% of patients do not receive recommended care, and 30% receive care that is contraindicated.24,25 Little information exists that describes the quality of the supportive care provided to children with cancer. However, surveys of supportive care for children with cancer in both North America and the Netherlands have identified widely variable practice that is most often inconsistent with available CPGs.26,27
To enhance implementation, trustworthy CPGs must be readily available and accessible, the wording of CPG recommendations must be understandable, and barriers to their implementation must be overcome. To address these needs, we are developing a website devoted to facilitating children’s self-report symptom screening and to disseminating supportive care CPGs—Supportive Care Prioritization: Assessment and Recommendations for Kids (SPARK).
SPARK has two goals. First, it will house trustworthy supportive care CPGs for pediatric cancer and recipients of HSCT in a format that is readily understood by health care providers. These CPGs will be used to create recommendations aimed at children and their families.
Second, SPRAK will contain a web-based application of SSPedi to promote accessibility of symptom screening. Symptom scores will also be integrated with CPG recommendations to provide health care providers, children, and family members with evidence-based strategies to manage bothersome symptoms. Ultimately, we envision that SPARK will offer a supportive care CPG for each symptom identified during SSPedi screening.
In our vision of the future, symptom control will become a metric by which the quality of health care is judged. To realize this vision, we need a feasible mechanism by which children with cancer and children who are undergoing HSCT can easily report and track symptoms and for this information to be readily available to clinicians. We also need trustworthy CPGs that address the prevention and treatment of bothersome symptoms.
We expect SPARK to transform the pediatric oncology supportive care delivery model from our current nonsystematic, health care provider–centered approach to one that is systematic and focused on the child. The ultimate result will be improved symptom control and better quality of life for children receiving cancer treatment.
Acknowledgement: Research and development of the Pediatric Cancer-Specific Symptom Assessment Screening Tool is supported by The Pedal For Hope Impact Grant of the Canadian Cancer Society (Grant 702295). Research and development of the Pediatric Cancer-Specific Symptom Assessment Screening Tool was supported by the Pediatric Oncology Group of Ontario Research Unit.