Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics

Abstract

Context.

Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation.

Objectives.

Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.

Methods.

Funded through a US$1.6 million National Institutes of Health / National Cancer Institute grant 2010–2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children.

Results.

The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach future “Trainers,” thus becoming “Master Facilitators”. Between 2012-May 2019 a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three PDWs. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish.

Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Participants subsequently anticipated improvements in patient care for children with serious illness at their home institutions.

Conclusion.

EPEC-Pediatrics has developed into the most comprehensive PPC curriculum. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.

Background

More than 21 million children worldwide would benefit from pediatric palliative care (PPC). Of those, over 8 million children need specialized PPC services.(1) In the United States (US) alone, a total of 41,881 children 0–19 years died in 2014, more than 55% (23,215) of them infants younger than 1 year.(2) Leading causes of deaths due to serious illnesses in childhood include congenital malformations and chromosomal abnormalities (5,672), premature birth (4,173), followed by malignancies (1,838) and cardiac disease/diseases of the circulatory system (1,083). Notably, although the prognosis for children with cancer has improved considerably over the past four decades,(3) malignancies remain the leading cause of non-accidental death in childhood in children older than one year of age in the US. (2, 4)

Studies, especially among children with cancer, suggest that children with serious illness experience high symptom distress and poor quality of life.(5–11) Unfortunately, a majority of distressing symptoms in children with advanced cancer (such as pain, dyspnea, and nausea/vomiting) are not treated, and when treated, therapy is commonly ineffective.(5–7, 9, 12, 13) The only prospective study using self-assessment of pediatric advanced cancer patients revealed many highly distressing symptoms including pain (58%), fatigue (41%), drowsiness (40%), anorexia (36%), nausea (34%), dyspnea (9%), and other symptoms.(13) Advances in the control of symptoms in children living with serious illness, such as cancer, have unfortunately not kept pace with treatment directed at the underlying disease.

In contrast, emerging research suggests that integration of PPC into the care of children with serious illness improves outcomes. For example, reports from bereaved parents showed that children with cancer who received PPC experienced less distress from pain, dyspnea, and anxiety during the end-of-life period, (7) and children who received pediatric palliative home care were more likely to have fun and to experience events that added meaning to life.(9) In addition, families who received PPC services report improved communication (14) and children receiving PPC experience shorter hospitalizations and fewer emergency department visits.(15, 16)

While high-quality PPC for children with serious illnesses is now an expected standard of medicine. (17) However, significant barriers remain to meet this standard. These include care related to reimbursement issues, the emotional impact of caring for seriously ill children, the lack of interdisciplinary PPC teams with sufficient staffing, and importantly, lack of formal education to meet the need.(18, 19)

Education in PPC is in high demand worldwide.(20) Lack of clinician training, as well as education of families with children living with serious illness, has been cited as a major barrier to children and families accessing skilled palliative care.(21) In fact, professional education and development in palliative care is now encouraged in the recent Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life. (17)

While there are an increasing number of PPC programs in children’s hospitals across the US, many are vastly understaffed.(22) Further, the number of physician training slots for pediatric hospice and palliative medicine (HPM) specialists are not high enough to meet this need. In 2018, out of more than 220 children’s hospitals, only 38 US institutions offered a total of 47 pediatric fellowships (or adult fellowships with a pediatric track) in HPM (23). This is more than all other remaining PPC/HPM training programs worldwide combined. The number of pediatric patients needing palliative care will continue to exceed the number of palliative care specialists that programs can train.(24) Indeed, most seriously ill children will be cared for by their primary subspecialists and pediatric clinicians. Therefore, increasing PPC competencies in these clinicians is a critical need, and as a result we created the Education in Palliative and End of Life Care (EPEC)-Pediatrics program, a primary pediatric palliative care curriculum. The purpose of this report is to:

1. Report on the development of the now most comprehensive PPC curriculum world-wide

2. Describe the curriculum’s dissemination strategies

3. Present efforts and impact in training “Master Facilitators”, “Trainers” and “End-Users” worldwide

Part 1: EPEC-Pediatrics Curriculum Development

In response to the need for more widespread professional training in primary PPC and the gap between basic and advanced training in the prevention and treatment of pain and other distressing symptoms, EPEC-Pediatrics was conceptualized by a core investigator team (Supplemental Table A) and then funded through a $1.6 million NCI R25 grant. This program was adapted from the adult EPEC Program with the pediatric content newly created after an extensive review of existing PPC Curricula.(25–31) The adult EPEC program is a leading model for training clinicians in primary palliative care skills,(28) and is currently comprised of 17 modules, 4 of them addressing pain and symptom management.(32) EPEC and EPEC-Pediatrics are designed to train non-palliative care specialists in basic palliative care competencies, referred to in the literature as “primary palliative care.” (24, 33) In late 2010, an EPEC-Pediatrics Advisory Group of 11 PPC specialists, including 2 bereaved parents, was established to oversee curriculum development and writing. (Supplemental Table A). The writers group consisted of PPC specialists, physicians, advanced practice nurses, nurses, social workers, and other members of interdisciplinary PPC teams. Following a consensus process on importance of inclusion, 23 modules were eventually chosen for the curriculum (Table 2) with a 24^th module (Methadone) split off as a separate module in 2016. The consensus was that assessment and advanced treatment of distressing symptoms of children with serious illness was underemphasized in existing curricula and thus became a significant focus of EPEC-Pediatrics. Compared with 4 adult EPEC modules, in the pediatric version 12 modules (or 50%) address pain and symptom management, with the remainder covering the “nuts-and-bolts” of PPC (Table 1). In addition to the core editorial team, there were 27 additional writers producing the curriculum content (Supplemental Table A) which included: (a) 24 PowerPoint/Keynote presentations plus (b) detailed teaching guides for each module, with (c) 18 of those also available online for self-study. (Table 1) In addition to text and slide presentations, (d) professional quality video training vignettes were filmed, and PPC experts were interviewed for development of so-called trigger tapes. Each module also includes relevant psychosocial content, emphasizing family-centered care practice and sensitivity.

Table 2:

EPEC-Pediatrics: Three Levels of Training

		Description	Upon Completion
Level 1	“End-user” Conference / Training	• Pediatric Palliative Care Training (custom made 1–5 days) • Participants to learn through interactive lectures, case-examples, role-play • Participants NOT expected to teach curriculum material • Taught by EPEC-Pediatrics Trainers (and/or Master Facilitators)	• Increased knowledge about Primary PPC
Level 2	Train-the-Trainer Conference	• Completion of all 19 Online Modules • Participation in “Become an EPEC-Pediatric Trainer Conference” (1 ½ −3 days) • Learn how to teach health care professionals • Use interactive teaching styles skillfully • “Trainers” receive curriculum material, are encouraged and expected to teach	• Become an EPEC-Pediatrics Trainer
Level 3	Professional Development Workshop	• For EPEC-Pediatrics Trainers only • Small-group workshop • Theory & practice of adult learning and clinical practice improvement in teaching pediatric pain and palliative care • Master best presentation techniques • Supervised teaching at Train-the-Trainer Conference with feedback	• Become a candidate for EPEC-Pediatrics Master Facilitator

Table 1:

EPEC-Pediatrics Modules and Objectives

Module Title	Objectives
M1. What is Pediatric Palliative Care (PPC) and Why Does it Matter: Palliative Care Overview	• Define PPC as a set of tasks • Identify predictable opportunities for palliative care intervention at different stages of disease • Describe when and how to utilize a subspecialty palliative care team • Evaluate myths and assumptions about PPC
M2: Child Development	• Learn typical phases of cognitive, psychosocial and spiritual growth • Learn how children of different developmental capacity understand concepts of illness and death and how this can impact care planning • Learn interventions that can be utilized when working with children of diverse ages along the illness continuum and at end of life
M3: Family Centered Care	• Define Family-Centered Care (FCC) • Learn the four key principles in FCC • Describe strategies for delivering effective FCC in pediatric palliative care • Understand and reduce barriers to the delivery of FCC
M4: Grief and Bereavement	• Review theories of grief • Assess grief in children • Use developmentally based strategies to address grief • Discuss grief related to the loss of a child and strategies to address family grief
M5: Self Care for Professionals	• Understand how self-care is a core competency in palliative and end of life care • Recognize what triggers stress and burnout • Develop a self-care plan that reduces stress and fosters personal growth and well-being
M6: Team Collaboration and Effectiveness	• Identify the conceptual basis for teamwork in palliative care • Describe different types of teams in palliative care • Name specific advantages and challenges of teamwork
M7: Communication & Planning	• Describe the 6 steps of the SPIKES model for giving bad news • Detail reasons for communicating prognosis • Learn methods for communicating prognosis • Understand ways to elicit goals of care and to discuss advanced care planning
M8: Ethical & Legal Issues	• Place ethics in pediatric palliative care • Clarify role of parents as surrogate decision makers • Describe basic tenets of pediatric end-of-life care
M9: Teaching with EPEC-Pediatrics in the Face-to-Face Setting	• Describe how education can promote practice and systems change • Describe why it is important to identify the tension point for learners • Name three principles of adult learning • Design a training session using EPEC-Pediatrics curriculum materials
M10: Multi-Modal Analgesia	• Review assumptions about opioid use in children • Evaluate the 4 WHO-Principles of acute pediatric pain management • Discuss the concept of Multimodal Analgesia • Calculate morphine requirements for a child in severe pain
M11: Opioid Selection and Opioid Rotation	• Review opioids commonly used in pediatric palliative care  ○ Pharmacology  ○ Routes of administration  ○ Common adverse effects • Review opioids not recommended for pediatric use • Practice opioid rotation in a case example
M12: Management of Neuropathic Pain Management and Adjuvant Analgesia	• Appreciate the high prevalence of neuropathic pain in pediatric palliative care • Define neuropathic pain and describe main causes in pediatric patients • Emphasize the role of opioids as a first-line agent in neuropathic pain management • Develop a step-by-step treatment approach for neuropathic pain, including pharmacologic (opioids, non-opioids, adjuvants), procedural and integrative medicine approaches
M13: Procedural Pain Management Strategies	• Describe the evidence for the importance of managing procedural pain • Review the 4 essential pain management strategies for needle procedures • Identify pharmacologic agents including dose, route of administration, monitoring, and adverse effects • Identify behavioral and integrative strategies that facilitate coping with procedures
M14: Chronic Complex Pain*	• Discuss the prevalence of chronic pain and underlying pathophysiology in children • Appreciate that different chronic pain syndromes are often considered manifestations of an underlying vulnerability rather than separate disorder • Review the limited role for pharmacotherapy in children with chronic pain  ○ Opioids are usually not indicated! • Stress the importance of a rehabilitative, interdisciplinary team approach in managing chronic pain • Discuss management of children who have both acute pain, such as vaso-occlusive crisis in sickle-cell disease, and chronic daily musculoskeletal pain
M15: Management of Gastrointestinal Symptoms	• State the spectrum and impact of gastrointestinal symptoms • Recognize pathophysiology involved in nausea and vomiting, and learn to prescribe appropriate antiemetic therapy • Diagnose and treat diarrhea and constipation • Explain the diagnosis and treatment of anorexia-cachexia syndrome • Discuss weight changes and loss of appetite with caregivers
M16: Management of Respiratory Symptoms	• Appreciate the high prevalence of dyspnea, excess respiratory secretions and cough in pediatric palliative care and often inadequate treatment by clinicians • Discuss pathophysiology of common respiratory symptom in pediatric palliative care • Describe the role of opioids as a first-line agent in dyspnea Develop a step-by-step approach in managing dyspnea and other respiratory symptoms
M17: Management of Emotional and Behavioral Symptoms	• Describe approaches to emotional and behavioral aspects of palliative care • Discuss “phenotypes” of psychological and behavioral pathology in seriously ill children • Review the assessment and potential treatments for each phenotype Identify thresholds for referral to mental health clinicians
M18: Management of Neurological Symptoms	• Review neurological complications of children with serious illnesses, including advanced pediatric hematology/oncology conditions, and treatment strategies • Identify causes of pain behaviors in children with neurological impairment • Develop step-by-step approach to manage distressing neurological symptoms in pediatric palliative care
M19: Management of Refractory Distress	Describe persistent myths about palliative sedation Explain the circumstances under which palliative sedation may be indicated Describe recommended dosing for palliative sedation in children Review the potential alternatives to palliative sedation
M20: Preparation for Imminent Death	• Define the end-of-life period • Describe the tasks necessary for managing pain and distress at end of life • Identify important issues that require careful communication and planning • Describe the essential components of good care at the very end of life
M21: Integrative Medicine	• Describe how integrative medicine strategies can enhance care for children with life-threatening conditions. • Practice a relaxation and mental imagery (RMI) exercise. • Review importance of safe and effective integrative medicine modalities to improve pain and symptom management as well as quality of life for seriously ill children
M22: Introducing Quality Improvement in PPC	• Discuss why quality improvement methodology is an important approach for integrating pediatric palliative care into services • Describe the basic concepts of quality improvement approaches • Describe the first steps to improving quality • Complete a performance improvement project
M23: Teaching Pain and Symptom Management	• Describe the goals of education • Explain how adults learn best • Use personal style and presentation skills to make teaching more effective • Cope with ‘challenging’ participants • Experience different presentation modalities
M24: Methadone	• Review advantages and disadvantages of methadone use • Evaluate potential adverse effects of methadone • Explain difference of half-life compared to other opioids • Practice opioid rotation to methadone

[included M24: Methadone* in the online version until 2018]

Curriculum Content

EPEC-Pediatrics was created for delivery in a combination of online learning and in-person conference sessions (5). Online learning modules were made available to decrease travel costs and offer a more flexible schedule. Each presentation of the curriculum included 18 (+1 split off) self-study online modules and 1.5–2 days of in-person conference training (5–8 modules). Modules chosen for in-person instruction included those that focused on interactional skills and that allowed us to demonstrate innovative teaching techniques.

Teaching How to Teach: “Hook,” Attitude, Knowledge, and Skill

A common misconception in medical teaching appears to be that presenting “knowledge” (for example, displaying a large number of PowerPoint slides) alone will lead to behavior change (e.g., a physician will decide to administer morphine to a child with terminal dyspnea following the lecture). Unfortunately, this approach has not been shown to be effective (34–36), and Dixon postulated that in order to change clinicians’ behavior, and thereby patient outcomes, one needs to address “attitudes” and “skills” in addition to “knowledge”.(37) Therefore, EPEC-Pediatrics has been designed to help participants focus on teaching skills that include how to engage audiences (such as a “hook” or “reason to learn” at the start of a presentation) and how to address objectives that include attitudes, knowledge, and skills.

EPEC-Pediatrics Creates Trainers and Master Facilitators

True to the NCI/NIH funding, the initial emphasis of EPEC-Pediatrics was on pediatric hematology/oncology physicians and nurse practitioners, later opening to pediatric clinicians from all other fields and specialties. The curriculum teaches interdisciplinary pediatric clinicians and creates Trainers who are equipped to teach colleagues. These Trainers teach End-users, interdisciplinary participants who receive education offered by Trainers in the competencies of general pediatric palliative care. This Train-the-Trainer approach allows the Trainers (pediatric clinicians) access to training materials (including 24 PowerPoint slides, videos, cases, role plays, text and Trainer’s notes – teaching guides for Trainers who will be teaching the curriculum) for all modules, once the full course is completed.

Master Facilitators are EPEC-Pediatrics Trainers, who, following a designated Professional Development Workshop (PDW) of adult teaching techniques, successfully provided supervised teaching at one or several Train-the-Trainer conferences. The PDW is a 1-day conference that is designed to give specific practice and feedback on teaching techniques emphasizing interactive lectures, case-based teaching, and role play.

The key teaching modalities both Trainers and Master Facilitators experience and practice during EPEC-Pediatrics are: (a) interactive lecture, (b) role play, and (c) case-based teaching. We strongly discourage the use of too many slides and encourage use of small group discussion, and/or facilitated discussion with all participants, using flip charts, and other interactional strategies. In this way, the educational materials and strategy can be adapted to the needs of the audience in real time.

The EPEC-Pediatrics training materials are designed as “accordion modules.” Specifically, each of the 24 modules generally contains more material than can be taught in one hour, encouraging the Trainer to select relevant content for their specific audience. Trainers receive the explicit permission to modify the EPEC-Pediatrics slides or material for their individual teaching needs and we emphasize and practice the following established EPEC teaching components(28):

• Consider starting with a “Needs Assessment”. Engage the audience -what they would like you to cover in your teaching.

• Consider using a “Hook”. Identifying a “hook” or “tension-point” for the educational program can be a powerful lead-in. This might be a compelling patient story that underscores the need for change, a video, a review of common myths and misconceptions, statistics about inadequate pain control, or the incidence of suffering in certain situations. The goal is to heighten the participants’ awareness and motivation for the need to change, and as such learning.

• Address “Attitudes”/Barriers/Myths/Misconceptions and how to overcome them. Example: Identify and address common myths preventing opioid prescription for children with severe pain.

• Provide “Knowledge”. Example: “Discuss the 4 World Health Organization (WHO) principles of acute pediatric pain management.” Make the presentation interactive with cases, videos, etc., and reduce the number of slides. Although it is unclear what the maximum attention span of professional audiences is(38), we recommend to interrupt a lecture at least every 8–10 minutes (e.g. with a video, interactive session, case, etc.) to maintain the audience’s interest.(39)

• Teach a “Skill” Example: “Practice morphine prescription in small groups using a case example.”

EPEC-Pediatrics Dissemination Model

Our dissemination model included three phases: (1) the adaptation of the EPEC core curriculum to fit the needs of infants, children, and adolescents; (2) the creation of a core faculty of Master Facilitators to create Trainers; and (3) the evolution of the program design to fit the needs of new educational delivery systems and health care settings.

The primary intended audience was initially physicians and nurse practitioners in pediatric hematology and oncology. However, we also emphasized PPC issues for children with non-malignant diseases and made the content relevant for other interdisciplinary team members. The goal of this model is maximal dissemination of primary PPC content to non-palliative care specialists through a variety of settings and delivery methods.

We started by beta-testing the face-to-face Train-the-Trainer conference in Boston, MA in 2012. Using the detailed feedback of the Trainers and Master Facilitators (MFs), the EPEC-Pediatrics program (http://epec.net/epec_pediatrics.php) has been continuously modified and refined throughout the grant funding period, which included 7 NIH/NCI-funded Train-the-Trainer conferences, as well as 8 conferences, which were offered outside of the funded program. (Figure 1, Table 3). EPEC-Pediatrics now offers 3 levels of training (see Table 4).

Figure 1.

EPEC-Pediatrics – A virtual college

Table 3: Participant Demographics for the 7 EPEC-Pediatrics “Train-the-Trainer Courses” offered within NIH/NCI grant.

[Boston (2012), Miami (2013), San Diego (2014), Oak Brook (2014), Phoenix (2015), Chicago (2016), Montreal (2017)]

Master Facilitators*	23
Trainers (Participants)	348
Medical Specialty
Hematology/Oncology	146 (42%)
Other	202 (58%)
Clinical Role
Physician	261(75%)
Nurse/NP/PA**	77 (22%)
Other (e.g., Social Worker)	10 (3%)
Geographic Representation by Country
USA	267 (77%)
Canada	29 (8%)
Other***	52 (15%)

^*Four Master Facilitators are part of the core team.

^**NP=Nurse Practitioner; PA=Physician Assistant.

^***Other countries represented include: Argentina (3), Australia (4), Brazil (1), Colombia (1), Costa Rica (3), Denmark (4), Dominican Republic (1), Egypt (1), England (1), Guatemala (2), India (3), Israel (1), Japan (1), Jordan (1), Kuwait (2), Mexico (3), New Zealand (1), Puerto Rico (5), Qatar (1), Russia (2), Saudi Arabia (1), Scotland (2), South Africa (1), South Korea (1), Sweden (1) , Turkey (1), Ukraine (2), Uruguay (1), Venezuela (1).

Table 4: Training Evaluation of Online Modules During NIH Grant Funding.

(% Questions answered with “Yes”)

	I have obtained new information (knowledge) as a result of completing this course.	This educational activity will impact my competency (skills/abilities/strategies gained from the new information).	This educational activity will impact my performance (implementing the new skills/abilities/strategies).	The skills/abilities/strategies I have obtained at this activity potentially will affect my patient’s outcomes?
11 Advanced Pain & Symptom Management Modules* (mean n=179 [range 127–244] responses]	89%	89.6%	85.4%	89.6%
7 “Nuts & Bolt” PPC Modules** (mean n=193 [range 133–256] responses]	77.1%	80.4 %	78.6 %	81.6 %
All 18 online modules	84.4 %	86 %	82.7 %	86.5 %

^*The online Module 14 “Chronic Complex Pain” has been split into 2 modules: M14 Chronic Complex Pain and M24 Methadone

In order to teach additional core faculty Master Facilitators after the initial pediatric Master Facilitators were trained, we created a designated pediatric PDW. This consisted of one day of intensive teaching and feedback about adult learning, including sessions on giving interactive lectures, facilitating small groups and case studies, and facilitating role play. Following completion of the PDW, Master Facilitator candidates were then invited to co-facilitate at a subsequent EPEC-Pediatrics conference and receive further guidance and feedback. We believe that this type of development and feedback of our facilitators is critical to the quality of instruction.

Additional funding led to adapting the curriculum for Latin America and Canada, including Spanish and French translations, as well as teaching in several foreign countries. EPEC-Pediatrics LatinoAmerica(40) began with the training of 8 South American MFs and an initial Train-the-Trainer conference with 58 participants from 7 countries. Another satellite project was funded by the Canadian Partnership Against Cancer (CPAC) in 2014 with CAN$ 950,000 and developed in collaboration with 7 Canadian provincial Ministries of Health, Family Advocacy: Childhood Cancer Canada Foundation, Ontario Parents Advocating for Children with Cancer; Pediatric Oncology: Atlantic Provinces Pediatric Hematology/Oncology Network, C17 Council, Canadian Paediatric Brain Tumor Consortium, and the Pediatric Oncology Group of Ontario. The overall project, “Enhancing the Quality of Palliative and End-of-Life Care for Children with Cancer” trained regional teams from 15 Canadian children’s hospitals and involved implementation of a quality improvement project that resulted in training of four Canadian MFs. The 96 participants of 2 regional conferences trained more than 3,500 end-users in all regions of Canada.(41). Countries outside the USA in which EPEC-Pediatrics has been taught include: Australia, Austria (which included training clinicians from 7 Eastern European countries), Canada (x3), India (x2), Israel (for Palestinian and Israeli clinicians), Malaysia, and New Zealand. Between 2012-March 2019 there were a total 867 EPEC-Pediatrics Trainers and 75 Master Facilitators from 58 countries representing all six continents (Figure 3) trained as a result of conducting a total of 17 Train-the-Trainer conferences and 3 Professional Development Workshops.

Figure 3.

EPEC-Pediatrics Train-the-Trainers Participants 2012-March 2019: 867 Trainers plus 75 Master Facilitators from 58 countries and territories

Number of End-Users Trained

Results from Canada, where 72 EPEC-Pediatrics Trainers taught 3,475 end-users(42) and from Australia, where 54 Trainers taught more than 6,000 end-users [personal communication] suggest that between 48–111 end-users might have been educated by an individual EPEC-Pediatrics Trainer. As such, within the NIH grant we trained 346 Trainers, reaching an estimated 16,600–38,400 end-users, and a total of so far 867 Trainers (May 2019), possibly reaching approximately 41,000–96,000 end-users

Part 2: NIH/NCI Grant-Funded Conferences

This section of this paper describes the EPEC-Pediatrics program training outcomes for the 7 Train-the-Trainer conferences funded through the NIH/NCI grant period 2012–2017, including knowledge, skills, attitudes, and participant evaluations. We also describe current and anticipated post-grant training and program sustainability plans.

Participant Characteristics

Within NIH/NCI grant there were 7 Train-the-Trainer conferences held across the US and Canada from 2012–2017, with 348 individual participants and 23 MFs trained (see Table 3). Each conference was attended by between 44–54 participants and each conference was held over 1.5 – 2 days.

Training Outcomes—Knowledge, Skills, Attitudes, and Program Evaluation

Introduction

Of the 24 training modules, 19 were made available on-line and five of the modules were designed to be exclusively offered in the face-to-face setting: Teaching with EPEC-Pediatrics in the face-to-face setting (M9), Teaching Through Interactive Lecture (M23), Team Collaboration and Effectiveness (M6), Self-Care for Professionals (M5), and Communication and Planning (M7). There were no online modules available for the initial beta-testers in Boston 2012, and the remaining 305 (88%) of the 348 NIH/NCI funded face-to-face conference participants completed training modules online.

Knowledge

Knowledge gained was assessed following completion of each online module with the question: “I have obtained new information (knowledge) as a result of completing this course [module].” The total percentage of Trainers reporting that they obtained new knowledge (yes/no) across all online modules was 84.3% (range from 96% for Neuropathic Pain to 67% for Family-Centered Care). See Table 4 for the assessment of each module.

Skills

Two online module evaluation items assessed Trainers’ perceptions of skills obtained, by module (yes/no): The first 1) “This educational activity will impact my competency (skills/abilities/strategies gained from the new information),” and 2) “This educational activity will impact my performance (implementing the new skills/abilities/strategies)”. Overall, agreement with the first item was a mean of 86.2% across all modules. Online modules with the highest agreement with the first item about competency were Opioid Selection and Rotation (n=164, 93.7%) and Neuropathic Pain (n=222, 94.9%). For the second item about skills implementation, the overall agreement with the statement across all modules was 83.1%.

Attitude / Behavior Change

Trainer attitudes were assessed with one online training question that was asked following completion of each module: “This module is going to change my practice upon return to my institution (Yes/No).” The percentage of overall agreement (across modules) was 85.1%. Open-ended feedback for the top-rated pain and symptom-focused modules and the top-rated psychosocial modules can be seen in Table 5.

Table 5.

Themes identified during open-ended evaluations following online module completion for the top-rated online modules

	Change in Practice	Most valuable topic	Skills/abilities gained
Pain & Symptom Modules
Neuropathic pain (88%)	Efforts to improve multifaceted approach to neuropathic pain; non-pharmacological approaches to pain; step-wise process	8-step approach; adjuvant therapies (ketamine)	Better assessment of neuropathic pain; improved knowledge of neuropathic pain and treatment options available; better use of adjuvant therapies
Acute pain management (85%)	Better tailoring of opiates to meet individual patient needs; “We have to rearrange all pain control approaches in our institution”; previous under-dosing	Dosing/titration strategies; WHO guidelines	Teach opioids differently; better titration of meds; better pain management skills
Chronic/complex pain (84%)	Use of methadone; do not use opioids for chronic pain	Use of methadone; chronic pain approach	Being able to recognize chronic pain issues and how to approach them; using the 4 S’s to treat chronic pain
Psychosocial Modules
Child development (70%)	Better/appropriate ways to interact with children and families based on child development	Examples of how children in different developmental stages cope with serious illness	Communication/Strategy
Grief and bereavement (70%)	Anticipatory grief guidance (Increased awareness of the need for anticipatory guidance regarding grief); efforts to improve team follow-up after death; improve bereavement resources	Children’s developmental expectations regarding death; prolonged grief	More tools and knowledge when talking to families and patients; better follow up after death

Face-to-Face Program Evaluation

Evaluations were used to help refine the program and were given for each module presented and for the overall conference. The evaluations included questions about meeting the module objectives, if the presentation(s) will likely affect change, and how to improve the conference in the future. The percentage of Trainers reporting new knowledge and skills gained across all modules taught was 98%. Because the face-to-face individual module evaluations were offered by different MFs across conferences and scores were influenced by MF teaching style, etc., findings are not comparable across conferences and not reported here.

Overall Face-to-Face Conference Feedback

Trainers were asked to complete a summary evaluation following the face-to-face training conferences. In addition to questions about knowledge, attitudes and skills, the overall face-to-face evaluations included questions asking participants to describe strengths and weaknesses of the conference, as well as suggestions for improvement. Common themes from a descriptive thematic analysis of the three most recent conferences held during the grant funding period were as follows. Overall feedback was very positive, with participants expressing appreciation for the opportunity. Participants felt that observing different Master Facilitator teaching styles was helpful and the conference provided a good opportunity to network with peers. Several participants felt the two-day format was too short and suggested offering a longer face-to-face course in the future to an expanded audience (i.e., not only pediatric clinical providers).

Satellite programs

Several satellite programs have developed from EPEC-Pediatrics, including “Enhancing the Quality of Palliative and End-of-Life Care for Children with Cancer” funded by Canadian Partnership Against Cancer, and “EPEC-Pediatrico LatinoAmerica”. In Canada, EPEC regional teams of 3–6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who then taught the curriculum to health professionals and implemented quality improvement projects. Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals.(42) All slides have been translated into French.

EPEC-Pediatrics LatinoAmérica trained 8 Latin-American physicians as EPEC-Trainers and MFs during the first Train-the-Trainer Conference 2014–2016 on Sept 6–7, 2015 (Montevideo, Uruguay). The “1st Train-the-Trainer Conference (Curso de Capacitatores EPEC-Peds LatinoAmérica)” included 58 participants and MFs from Argentina, Brazil, Dominican Republic, Ecuador, Guatemala, Mexico, and Uruguay. The second Spanish-speaking conference will be held in November 2019 in Argentina. Additionally, we are currently preparing for the development of an EPEC-Pediatrics International program tailored to the needs of low-to low-medium income countries in an effort to reach more Trainers and end-users in underserved locations across the globe. Several conferences in India, Malaysia, New Zealand and Australia were tailored to increase the foothold of PPC Trainers in South-East Asia and Oceania.

Discussion

This article describes the development and dissemination of the to date most comprehensive Pediatric Palliative Care curriculum and education dissemination project worldwide: EPEC-Pediatrics. Between 2012–2019, 17 conferences were held and a total of 867 EPEC-Pediatrics Trainers and 75 master facilitators from 58 countries were trained. Participants overwhelmingly reported improvements in their PPC knowledge, attitude and skills, teaching skills, and by a large majority anticipated positive clinical changes in patient care of children with serious illness in their home institution as a result. An estimated 41,000–96,000 participants (end-users) have been educated by EPEC-Pediatric Trainers worldwide so far. Demand for this training remains high. Following the completion of the NIH/NCI funding in 2017, EPEC-Pediatrics offered 6 new “Train-the-Trainer Conferences” in India, Argentina, Australia, Italy and the US (x2) in 2019 alone. In addition, EPEC-Pediatrics has led to other grants and 2 adaptations (e.g. Canada, Latin America) with a Global EPEC-Pediatrics for low-medium income countries in development.

In our experience it has become clear that there is a great need for similar training for psychosocial clinicians working in pediatrics. It is also important to note that pediatric palliative care is by definition an inter-professional practice. Therefore steps are being undertaken to enhance the psychosocial content in EPEC-Pediatrics to enable training for psychosocial clinicians and to allow inter-professional teaching in a more robust fashion going forward.

Initially, the goal in our NCI grant submission was to train at least 190 Trainers (participants) over a 5-year period through EPEC-Pediatrics. This goal was exceeded, with a total of 348 Trainers completing the EPEC-Pediatrics program through NIH/NCI grant funding 2012–2017. An additional 519 Trainers were educated outside the grant (through May 2019). Trainers who successfully completed all online training modules and participated in the Face-to-Face Conference, were granted access to all EPEC-Pediatrics training materials so that they could conduct training with staff at their own institutions or regions, and they received Continuing Education (CE) credits upon successful completion of the online modules and a face-to-face training conference. “Trigger-tape” educational videos and a teaching handbook for each module were included. We are currently conducting a survey of all 867 EPEC-Pediatrics Trainers (participants of Train-the-Trainer conference) and the 75 Master Facilitators to evaluate in detail how many of them have used the curriculum for teaching, clinical or quality improvement, and which material they have used in what way.

Since the end of the NIH grant-funding period in 2017, EPEC-Pediatrics has remained viable and self-sustaining. This has been accomplished through non-profit cost-recovery from registration fees and very little organizational overhead, with 8 additional conferences held after 2017 (see supplemental materials). At the time this paper was submitted, organization for conferences in Memphis, TN (September 2019) Minneapolis, MN (October 2019), Rome, Italy (November 2019) and Buenos Aires, Argentina (November 2019) are underway.

Hauser, et al. (2015) described that in their second 5 years of active development, teaching, and dissemination of adult EPEC, they had trained more than 1,000 Trainers and more than 74,000 reported end-users s via Trainers’ training efforts and online learning. The authors were aware that they were unable to document end-users from programs that do not track their outreach, those who did not respond to their survey of trainers, or those who use the curriculum without contacting them.(28) Estimating pediatric data is equally difficult: We have estimated that conservatively more than 41,000 end-users were trained by EPEC-Pediatrics trainer worldwide; but, as mentioned earlier, we are currently conducting a detailed survey to further characterize these data.

We believe that EPEC-Pediatrics fits well within an established framework of levels of PPC training: Primary, advanced, and subspecialty training.(43) At “Level 2: Advanced Primary PPC/Introductory Subspecialty PPC” EPEC-Pediatrics has now been developed as the most comprehensive PPC curriculum and dissemination “Train-the-Trainer” project worldwide. The curriculum originally had not been designed to train PPC specialists, but rather to give clinicians comprehensive tools to teach core PPC to interdisciplinary teams and promote best PPC practices by hematologists/oncologists and other pediatric specialists. However, since its inception we received feedback that it is also used for training of PPC specialists, both inside and outside designated fellowship programs.

Next steps for 2019–2020

In addition to offering 6 EPEC-Pediatrics conferences and 2 PDWs on 4 continents (table 3), we were successful in obtaining additional grant funding. This came from The Milbank Foundation, United States Cancer Pain Relief Committee, and The MAYDAY FUND. This funding will allow for an update of all 24 modules (PowerPoints, teaching guides and update of 24 online modules), organizing the conference in Argentina as well as offering a 3-day face-to-face conference in October 2019 and a 4-day face-to-face conference in 2020 to evaluate difference in online versus face-to-face teaching.

Summary

Since its inception in 2012, EPEC-Pediatrics has developed into the most comprehensive PPC curriculum and dissemination program worldwide. More than 800 clinicians in all 6 continents have become Trainers and Master Facilitators and we estimate that more than 38,000 end-users have been trained. In addition, a Spanish-speaking version is available and all slides have been translated into French. The 867 Trainers reported not only improvements in their personal PPC knowledge, attitude and skills, but also in their teaching skills and anticipated clinical improvements in patient care of children with serious illness in their home institution as a result. EPEC-Pediatrics is a state-of-the-art educational program that has, and will continue to a train a global network of health care professionals who are in turn positioned to train others in their communities to provide evidence-based care for children with palliative care needs and their families. The curriculum is highly adaptable for local settings, and a local faculty of senior master facilitators have been trained in several regions (e.g. in South America, Canada, South-East Asia, Australia/New Zealand, India, and in November 2019 beginning in Europe) to ensure ongoing training with little or no reliance on the US-based core master facilitators.

Figure 2.

Development of the EPEC-Pediatrics Curriculum and Dissemination During the NIH/NCI Grant Period 2010–2017