Background
Despite significant improvements in treatment, childhood cancer remains a leading cause of non-accidental death in children beyond infancy [
1]. Annually in Canada, about 10,000 children are living with cancer (both those receiving cancer treatments and long-term survivors) and approximately 210 will die from their disease [
2]. Even when a child survives, from the moment of diagnosis the threat of death may be foremost in the mind of the parents, siblings, and ill child. The treatments aimed at achieving survival are generally intensive with a significant symptom burden that is often long-lasting and disruptive to the life of the child and family [
3].
Palliative care for children focuses on alleviating the physical, social, psychological, and spiritual suffering experienced by children and families, while promoting quality of life, fostering family connections, and sustaining hope despite the possibility of death. It is a family-centered approach that includes shared decision-making and sensitivity to the family’s cultural and spiritual values, beliefs, and practices [
4]. In relation to pediatric cancer, palliative care has historically been thought of as being relevant only once all treatments with curative intent have been discontinued, and is offered as an alternative rather than a concurrent treatment [
5]. However, emerging data suggest that principles of palliative care can and should be incorporated from diagnosis and throughout the disease course, not only at the end of life, to ensure relief of suffering and good quality of life regardless of the disease outcome [
6‐
10]. Consultation from specialist palliative care teams may be helpful for more complex situations [
3].
Oncologists and other health professionals report receiving little training specific to pediatric palliative care (PPC) [
11‐
13]. This lack of training may contribute to reports of less than optimal care in this area: parents’ report that children with cancer experience a great deal of suffering from pain and other symptoms left inadequately treated [
14,
15]; some parents feel abandoned by health professionals both before and after their child’s death [
16,
17]; family-centered care is not uniformly practiced [
12]; and siblings’ needs are not always adequately addressed [
12,
18]. To realize improvements in these areas, it is crucial that all health professionals who provide care to children with cancer receive comprehensive education about PPC as well as guidance and support to implement new knowledge and skills throughout the disease course. Moreover, efforts are needed to enhance collaboration between pediatric oncology and specialists in PPC. Such efforts will build familiarity, trust, and relationships, thereby facilitating concurrent delivery of disease-directed and palliative care to children living with cancer [
3]. To achieve these goals, we will implement a national roll-out of
Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) [
19], a curriculum specifically designed for pediatric physicians and advanced practice nurses using a ‘Train-the-Trainer’ model.
Built on the demonstrated success of the original EPEC™ curriculum [
20], focused on care of adults, EPEC®-Pediatrics combines didactic sessions, video presentations, interactive discussions, and practice exercises. It is comprised of 24 modules that can be taught face-to-face to interprofessional End-Users by EPEC®-Pediatrics Trainers. The Trainers learn the content via 19 online modules plus 5 delivered at a one and a half day in-person conference by EPEC®-Pediatrics Master Facilitators demonstrating effective adult teaching. Funded by a US$ 1.6 million National Institutes of Health/National Cancer Institute (1 R25 CA151000-01) grant from 2010-2015, Friedrichsdorf et al. developed the curriculum in collaboration with 35 national and international leaders in the field of paediatric pain medicine, hematology/oncology and palliative care as well as parent advisors [
21]. A list of the modules is provided in Table
1. Following initial development, the curriculum was refined between 2012 and 2014 based on a beta testing conference and three subsequent Train-the-Trainer conferences with 200 pediatric physicians and advanced practice nurses in the United States and 19 other countries. All EPEC®-Pediatrics content is evidence-based and is delivered according to effective adult-education pedagogy. EPEC®-Pediatrics uses a Train-the-Trainer model; participants learn the content as well as obtain effective strategies and resources to educate others. In a recent systematic review, use of a Train-the-Trainer model was shown to be effective in improving knowledge and skills of health professionals, enhancing dissemination, and having a positive impact on patient outcomes [
22].
Table 1
EPEC®-Pediatrics modules
1 | Pediatric Palliative Care: Why Does it Matter | Online |
2 | Child Development | Online |
3 | Family Centered Care | Online |
4 | Grief and Bereavement | Online |
5 | Self-Care for Professionals | Face-to-Face |
6 | Team Collaboration and Effectiveness | Face-to-Face |
7 | Communication and Planning | Face-to-Face |
8 | Ethical and Legal Considerations | Online |
9 | Teaching with EPEC®-Pediatrics in the Face-to-Face Setting | Face-to-Face |
10 | Multimodal Analgesia | Online |
11 | Opioid Selection and Rotation | Online |
12 | Management of Neuropathic Pain and Adjuvant Analgesia | Online |
13 | Procedural Pain Management Strategies | Online |
14 | Chronic Complex Pain Management | Online |
15 | Management of Gastrointestinal Symptoms | Online |
16 | Management of Respiratory Symptoms | Online |
17 | Management of Emotional and Behavioral Symptoms | Online |
18 | Management of Neurologic Symptom | Online |
19 | Palliative Sedation | Online |
20 | Preparing for Imminent Death | Online |
21 | Integrative Medicine | Online |
22 | Introducing Quality Improvement to PPC | Online |
23 | Teaching Pain and Symptom Management | Face-to-Face |
24 | Methadone | Online |
While data on the effective dissemination of EPEC®-Pediatrics and EPEC™ is favorable [
20], the impact on patient/family outcomes has not yet been measured. Recognition that education does not necessarily lead to significant improvements has led to a strong emphasis within the EPEC®-Pediatrics curriculum in each module to address “attitudes” (myths, misconceptions, obstacles) as well as providing a “skill” in addition to sharing “knowledge” in hopes of behavior changes among the Trainers and End-Users [
23,
24]. To increase the chance of practice change toward better clinical pediatric care, the curriculum added the
Tailored Implementation of Practice Standards (TIPS) Kit to the suite of resources available through EPEC™. Each TIPS Kit includes a protocol for an evidence-based clinical intervention (e.g. symptom management protocol), a guide for how to adapt the protocol to meet local needs, a template for evaluation measures, and detailed plans for quality improvement (QI) methods for implementation. TIPS Kits reduce the initial time investment needed to develop a QI project by providing a limited number of possible actions and measurement options to select from. The EPEC®-Pediatrics curriculum currently includes one TIPS Kit, which aims to standardize symptom assessment for children with serious illness using two pediatric versions of the Memorial Symptom Assessment Scale [
25,
26].
In our study, the content of EPEC®-Pediatrics will not be changed; however, four key features will be added to the delivery process based on implementation science [
27] to promote sustained improvement in the quality of palliative care for children with cancer and their families. 1) Rather than attending as individuals, Regional Teams of three to five health professionals representing oncology, palliative care, and the community (e.g., home care nurses, community pediatricians) will attend a Train-the-Trainer Conference together in 2015 and work as a team. 2) A second day will be added to the Conference to allow Regional Teams to review data collected in the pre-test period and use those data to develop regional dissemination strategies and plan their QI project. 3) The Research Team developed two additional TIPS Kits to provide a wider choice of QI projects. 4) Ongoing support will be provided by the Research Team for education and QI initiatives throughout the intervention period, 2015 - 2016. Teams will also communicate with each other via a listserv and webinars to share successes and challenges.
The effectiveness of our EPEC®-Pediatrics roll-out will be assessed according to four outcomes. The guiding research questions are: What is the impact of EPEC®-Pediatrics on: 1) the self-assessed knowledge of health professionals who take part in the curriculum; 2) knowledge transfer and dissemination outcomes; 3) practice change outcomes, and 4) the quality of palliative care provided to children with cancer and their families?
Discussion
Though the original EPEC™ has been available since 1999, evaluation has thus far focused on dissemination outcomes [
20]; there has not been an attempt to measure the impact of EPEC™ on quality of care. However, as with most education programs for health professionals, the ultimate goal is that education will result in practice changes and better care for patients. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level.
Our study design and timelines will allow us to adequately measure the impact of the EPEC®-Pediatrics curriculum roll-out on self-assessed knowledge improvements of health professionals; knowledge transfer and dissemination outcomes; and practice change outcomes, as has been done in the past [
20]. However, our study will be the first to examine the impact on a national level. We have chosen a pre- post-test design to evaluate our intervention in terms of its impact on quality of care. A recent systematic review indicated that a train-the-trainer model is effective in improving patient outcomes; however, the length of the intervention and timing of data collection varied widely across studies [
22]. Therefore, there is little evidence available to determine an optimal length of the intervention or timing for outcome assessment that could be used to guide a stronger design, such as a cluster randomized controlled trial. It is possible that a longer intervention period and a longer follow-up period for post-test data collection may show greater improvements in patient outcomes. Additionally, though one of the strengths of EPEC®-Pediatrics is the breadth of knowledge covered in the curriculum and the flexibility that Trainers have in choosing which aspects of the curriculum to present to End-Users, this flexibility means that the roll-out may look very different across the participating sites. To address some of the limitations we will explore differences in how the curriculum has been rolled out in each site (e.g., number and type of education sessions, number of End-Users, type and success of QI projects) and whether these differences are associated with any differences in quality of palliative care across sites. This exploration may help to identify some core components of the curriculum that must be included as part of the intervention and may advance the science such that a stronger design could be used in future research to roll-out the curriculum to health professionals who care for children with life-threatening illnesses other than cancer.
Our study is powered to detect changes in care quality. However, even if no changes are seen in the course of our study, measurement of the quality of palliative care for children with cancer on a national level is an important aspect of our study and will be a significant contribution to the field of pediatric oncology and palliative care. This wealth of data can be used as the basis for future research and targeted interventions to address specific issues nationally or locally. Ultimately our goal is to enhance the care of all children who live with life-threatening illnesses; we believe this study will be a significant step forward in achieving that goal.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
All authors made substantive intellectual contributions to conception and design of this study and manuscript. KW and AR were the lead authors responsible for the initial drafting of the manuscript. SF and JW are the original developers of EPEC®-Pediatrics. All authors contributed to the paper, revised drafts critically for important intellectual content, and read and approved the final manuscript. Each author agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.