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Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance… Widger, Kimberley; Friedrichsdorf, Stefan; Wolfe, Joanne; Liben, Stephen; Pole, Jason D; Bouffet, Eric; Greenberg, Mark; Husain, Amna; Siden, Harold; Whitlock, James A; Rapoport, Adam Jan 27, 2016

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STUDY PROTOCOL Open AccessProtocol: Evaluating the impact of a nation-wide train-the-trainer educational initiativeto enhance the quality of palliative care forchildren with cancerKimberley Widger1,2*, Stefan Friedrichsdorf3, Joanne Wolfe4, Stephen Liben5, Jason D. Pole6, Eric Bouffet7,Mark Greenberg8, Amna Husain9, Harold Siden10, James A. Whitlock11 and Adam Rapoport12AbstractBackground: There are identified gaps in the care provided to children with cancer based on the self-identifiedlack of education for health care professionals in pediatric palliative care and in the perceptions of bereavedparents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a nationalroll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’model.Methods/design: In this study we are using a pre- post-test design and an integrated knowledge translationapproach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of healthprofessionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care.The quality of palliative care will be assessed using data from three sources: a) parent and child surveys aboutsymptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parentsurveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ willtrain ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three tofive health professionals representing oncology, palliative care, and the community. Each team member willcomplete online modules and attend one of two face-to-face conferences, where they will receive training andmaterials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose aTailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project intheir region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars withother teams.Discussion: Through this study we aim to raise the level of pediatric palliative care education amongst health careprofessionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatricsboth on dissemination outcomes and on care quality at a national level. Based on the anticipated success of ourproject we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.Keywords: Pediatrics, Palliative care, Cancer, Quality care, Education, Knowledge translation* Correspondence: kim.widger@utoronto.ca1Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 130-155College Street, Toronto, ON M5T 1P8, Canada2Pediatric Advanced Care Team, Hospital for Sick Children, 555 UniversityAvenue, Toronto, ON M5G 1X8, CanadaFull list of author information is available at the end of the article© 2016 Widger et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Widger et al. BMC Palliative Care  (2016) 15:12 DOI 10.1186/s12904-016-0085-8BackgroundDespite significant improvements in treatment, childhoodcancer remains a leading cause of non-accidental death inchildren beyond infancy [1]. Annually in Canada, about10,000 children are living with cancer (both those receiv-ing cancer treatments and long-term survivors) and ap-proximately 210 will die from their disease [2]. Even whena child survives, from the moment of diagnosis the threatof death may be foremost in the mind of the parents, sib-lings, and ill child. The treatments aimed at achieving sur-vival are generally intensive with a significant symptomburden that is often long-lasting and disruptive to the lifeof the child and family [3].Palliative care for children focuses on alleviating thephysical, social, psychological, and spiritual suffering expe-rienced by children and families, while promoting qualityof life, fostering family connections, and sustaining hopedespite the possibility of death. It is a family-centered ap-proach that includes shared decision-making and sensitivityto the family’s cultural and spiritual values, beliefs, andpractices [4]. In relation to pediatric cancer, palliative carehas historically been thought of as being relevant only onceall treatments with curative intent have been discontinued,and is offered as an alternative rather than a concurrenttreatment [5]. However, emerging data suggest that princi-ples of palliative care can and should be incorporated fromdiagnosis and throughout the disease course, not only atthe end of life, to ensure relief of suffering and good qualityof life regardless of the disease outcome [6–10]. Consult-ation from specialist palliative care teams may be helpfulfor more complex situations [3].Oncologists and other health professionals report re-ceiving little training specific to pediatric palliative care(PPC) [11–13]. This lack of training may contribute toreports of less than optimal care in this area: parents’ re-port that children with cancer experience a great deal ofsuffering from pain and other symptoms left inad-equately treated [14, 15]; some parents feel abandonedby health professionals both before and after their child’sdeath [16, 17]; family-centered care is not uniformlypracticed [12]; and siblings’ needs are not always ad-equately addressed [12, 18]. To realize improvements inthese areas, it is crucial that all health professionals whoprovide care to children with cancer receive comprehensiveeducation about PPC as well as guidance and support toimplement new knowledge and skills throughout the dis-ease course. Moreover, efforts are needed to enhance col-laboration between pediatric oncology and specialists inPPC. Such efforts will build familiarity, trust, and relation-ships, thereby facilitating concurrent delivery of disease-directed and palliative care to children living with cancer[3]. To achieve these goals, we will implement a nationalroll-out of Education in Palliative and End-of-Life Care forPediatrics (EPEC®-Pediatrics) [19], a curriculum specificallydesigned for pediatric physicians and advanced practicenurses 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 com-prised of 24 modules that can be taught face-to-face tointerprofessional End-Users by EPEC®-Pediatrics Trainers.The Trainers learn the content via 19 online modules plus5 delivered at a one and a half day in-person conferenceby EPEC®-Pediatrics Master Facilitators demonstratingeffective adult teaching. Funded by a US$ 1.6 millionNational Institutes of Health/National Cancer Institute (1R25 CA151000-01) grant from 2010-2015, Friedrichsdorfet al. developed the curriculum in collaboration with 35national and international leaders in the field of paediatricpain medicine, hematology/oncology and palliative care aswell as parent advisors [21]. A list of the modules isprovided in Table 1. Following initial development, theTable 1 EPEC®-Pediatrics modulesTitle Mode of deliverya1 Pediatric Palliative Care: Why Does it Matter Online2 Child Development Online3 Family Centered Care Online4 Grief and Bereavement Online5 Self-Care for Professionals Face-to-Face6 Team Collaboration and Effectiveness Face-to-Face7 Communication and Planning Face-to-Face8 Ethical and Legal Considerations Online9 Teaching with EPEC®-Pediatrics inthe Face-to-Face SettingFace-to-Face10 Multimodal Analgesia Online11 Opioid Selection and Rotation Online12 Management of Neuropathic Pain andAdjuvant AnalgesiaOnline13 Procedural Pain Management Strategies Online14 Chronic Complex Pain Management Online15 Management of Gastrointestinal Symptoms Online16 Management of Respiratory Symptoms Online17 Management of Emotional and BehavioralSymptomsOnline18 Management of Neurologic Symptom Online19 Palliative Sedation Online20 Preparing for Imminent Death Online21 Integrative Medicine Online22 Introducing Quality Improvement to PPC Online23 Teaching Pain and Symptom Management Face-to-Face24 Methadone OnlineaOnline for education of EPEC-Pediatric Trainers; all modules will be taughtface-to-face to the End-UserWidger et al. BMC Palliative Care  (2016) 15:12 Page 2 of 9curriculum was refined between 2012 and 2014 based on abeta testing conference and three subsequent Train-the-Trainer conferences with 200 pediatric physicians andadvanced practice nurses in the United States and 19 othercountries. All EPEC®-Pediatrics content is evidence-basedand is delivered according to effective adult-educationpedagogy. EPEC®-Pediatrics uses a Train-the-Trainermodel; participants learn the content as well as obtaineffective strategies and resources to educate others. In arecent systematic review, use of a Train-the-Trainer modelwas shown to be effective in improving knowledge andskills of health professionals, enhancing dissemination, andhaving a positive impact on patient outcomes [22].While data on the effective dissemination of EPEC®-Pediatrics and EPEC™ is favorable [20], the impact onpatient/family outcomes has not yet been measured.Recognition that education does not necessarily lead tosignificant improvements has led to a strong emphasiswithin the EPEC®-Pediatrics curriculum in each moduleto address “attitudes” (myths, misconceptions, obstacles)as well as providing a “skill” in addition to sharing“knowledge” in hopes of behavior changes among theTrainers and End-Users [23, 24]. To increase the chanceof practice change toward better clinical pediatric care,the curriculum added the Tailored Implementation ofPractice Standards (TIPS) Kit to the suite of resourcesavailable through EPEC™. Each TIPS Kit includes aprotocol for an evidence-based clinical intervention (e.g.symptom management protocol), a guide for how toadapt the protocol to meet local needs, a template forevaluation measures, and detailed plans for qualityimprovement (QI) methods for implementation. TIPS Kitsreduce the initial time investment needed to develop a QIproject by providing a limited number of possible actionsand measurement options to select from. The EPEC®-Pediatrics curriculum currently includes one TIPS Kit,which aims to standardize symptom assessment forchildren with serious illness using two pediatric versionsof the Memorial Symptom Assessment Scale [25, 26].In our study, the content of EPEC®-Pediatrics will notbe changed; however, four key features will be added tothe delivery process based on implementation science[27] to promote sustained improvement in the quality ofpalliative care for children with cancer and their families.1) Rather than attending as individuals, Regional Teamsof three to five health professionals representing oncol-ogy, palliative care, and the community (e.g., home carenurses, community pediatricians) will attend a Train-the-Trainer Conference together in 2015 and work as ateam. 2) A second day will be added to the Conferenceto allow Regional Teams to review data collected in thepre-test period and use those data to develop regionaldissemination strategies and plan their QI project. 3)The Research Team developed two additional TIPS Kitsto provide a wider choice of QI projects. 4) Ongoingsupport will be provided by the Research Team for edu-cation and QI initiatives throughout the interventionperiod, 2015 - 2016. Teams will also communicate witheach other via a listserv and webinars to share successesand challenges.The effectiveness of our EPEC®-Pediatrics roll-out willbe assessed according to four outcomes. The guiding re-search questions are: What is the impact of EPEC®-Pediatrics on: 1) the self-assessed knowledge of healthprofessionals who take part in the curriculum; 2) know-ledge transfer and dissemination outcomes; 3) practicechange outcomes, and 4) the quality of palliative careprovided to children with cancer and their families?Methods/designDesignIn this study we will use a pre-post-test design and anintegrated knowledge translation (KT) approach with in-volvement of knowledge users and key-stakeholdersthrough the project [28]. The pre-test period will beginin January 2015 and the post-test period will begin inthe fall of 2016. This timeline allows for the educationalrollout of EPEC®-Pediatrics and QI to occur over ap-proximately 15 months. Data collection and analysis willoccur in three streams in order to answer the researchquestions: 1) knowledge dissemination, 2) quality im-provement, and 3) care quality. The study has been ap-proved by the Research Ethics Board (REB) at theHospital for Sick Children (#1000047116) as the primarysite as well as by the relevant REB for each participatingsite (See Additional file 1 for a list of sites with the cor-responding REB).Stream 1 - Knowledge disseminationData collection and analysis in Stream 1 will address theimpact of EPEC®-Pediatrics on the self-assessed know-ledge of health professionals who take part in the cur-riculum and on knowledge transfer and disseminationoutcomes.Sample and procedureThe EPEC®-Pediatrics roll-out will include training of fiveMaster Facilitators within Canada; Master Facilitators areindividuals qualified to train future EPEC®-PediatricsTrainers at the face-to-face conference. There are 3 steps tobecoming a Master Facilitator: 1) become an EPEC®-Pediatrics Trainer by completing all 19 online modules andattending a face-to-face conference as a participant; 2) at-tend a Professional Development Workshop offered byEPEC for additional development of teaching skills, and fi-nally 3) teach at an EPEC®-Pediatrics Train-the-Trainerconference where feedback is provided on teaching skills byexisting Master Facilitators. At each of the 16 participatingWidger et al. BMC Palliative Care  (2016) 15:12 Page 3 of 9sites, 3 to 5 health professionals will be identified as Re-gional Team members. Each Regional Team member(n = 45-80) will become an EPEC®-Pediatrics Trainerthrough completion of 19 online-modules and 5 face-to-face modules. Two face-to-face sessions will be heldover two full days with the content delivered by the newCanadian Master Facilitators in conjunction with the ori-ginal developers of EPEC®-Pediatrics. Regional Teams willcomplete the online modules on their own, then attendone of the two-day sessions as a team. At the end of theface-to-face session the new Trainers will be asked to pro-vide feedback on EPEC®-Pediatrics as a whole and assesstheir learning as part of the process. Feedback will besought using a Knowledge Transfer and Exchange (KTE)Survey completed in paper based format.Once Regional Team members have completed theirtraining they will work to deliver aspects of the EPEC®-Pediatrics curriculum to End-Users at their local site.Trainers will be encouraged to think very broadly aboutwho provides care to children with cancer within the in-stitution where they are based, within the local commu-nity, and more broadly in the wider geographic areaserved by the hospital. Education sessions may be of-fered as part of existing structures (e.g., resident trainingsession, education days for nurses, academic rounds,lunch and learns) or as separate sessions delivered spe-cifically for the study. When End-Users attend anEPEC®-Pediatrics session, they will be provided with aconsent form that gives details about our study. If theyagree to take part, End-Users will be asked to complete theKTE Survey in hard copy to assess the impact of the ses-sion on knowledge transfer. Even if people in attendancedo not want to take part in the research aspect of the ses-sion they are still welcome to attend. The Trainers who de-liver the session will collect the surveys and submit themto the core study team via Research Electronic Data Cap-ture (REDCap™) database, which is a secure, web-based ap-plication designed specifically for clinical research [29].Regional Team members will be asked to complete anEducation Roll-out Report on a quarterly basis to pro-vide summary information about the education sessionsthey have delivered to local End-Users. The Report willbe completed verbally with the Project Manager/Princi-pal Investigators (PI) via telephone or Skype and datawill be entered into REDCap™.Data collection toolsThe KTE Survey was developed through the CanadianPartnership Against Cancer and is based on a tool devel-oped by Skinner [30]. The survey includes items aboutthe participants’ demographics (e.g., role, designation,organization type, province) and degree of agreementwith statements that the information was relevant anduseful, increased knowledge, and that stated learningobjectives were met. There are also items asking whetherthe participant plans to discuss the information providedat the session with colleagues or use the information tomake changes in practice.The Education Roll-Out Report was developed by thestudy team to collect the number of times each EPEC®-Pediatrics module was offered along with the total numberof attendees at the session and whether the session washeld within the hospital or in the community. RegionalTeams will be asked to comment on any successes andchallenges in delivering the modules, indicate any waysthat the study team could provide additional supports toassist in delivery of the modules and to describe plans fordelivery of sessions in the coming quarter.Data analysisInformation obtained through the Education Roll-outReport and the KTE Surveys will be summarized de-scriptively. Our dissemination goal is to have a mini-mum of 5 Master Facilitators, 45 Trainers, and 600 End-Users from multiple professional groups across Canada(see Fig. 1) take part in at least one EPEC®-Pediatricssession. Our hypothesis is that the Trainers and End-Users will indicate that the sessions were useful, im-proved their knowledge related to the topic presented,and had some impact on their practice. We will comparethe summarized responses to the Educational Reportand KTE Surveys with these goals and hypotheses to de-termine if they have been achieved.Stream 2 - Practice change outcomesData collection and analysis in Stream 2 will address theimpact of EPEC®-Pediatrics on practice change out-comes; namely how many of the Regional Teams initiateQI projects and achieve their practice change goals.ProcedureRegional Teams at each of the 16 sites will be encour-aged to complete and report on a QI project related tothe overall goals of the study to improve palliative carefor children with cancer. Teams may choose to use oneof the TIPS Kits that are available as part of the project,or they may choose to do their own project. The EPEC®-Pediatrics curriculum currently includes one TIPS Kiton ‘symptom assessment’, with two additional kits underdevelopment related to ‘identifying goals of care’ and ‘be-reavement support’. Data will be collected about the QIprojects on a quarterly basis through a QI Progress Re-port. The report will be completed verbally on a quar-terly basis with the Project Manager/PIs via telephone orSkype and data will be entered into REDCap™.Widger et al. BMC Palliative Care  (2016) 15:12 Page 4 of 9Data collection toolThe QI Progress Report was developed by the studyteam to collect information about progress made on theQI projects. Information will be collected about thepractice improvement goals, strategies to achieve thesegoals, a summary of audit and feedback results, plans forthe next quarter, as well as successes, challenges andareas for further support.Data analysisQI Progress Report Data will be summarized descrip-tively. Our goal is to have at least 10 of the 16 RegionalTeams successfully attain the practice improvementgoals set in their chosen QI project.Stream 3 - Quality of careData collection and analysis in Stream 3 will address theimpact of EPEC®-Pediatrics on the quality of palliativecare provided to children with cancer and their families.Quality of palliative care will be assessed using data fromthree sources: A) surveys about symptoms, quality oflife, and care quality completed by children receiving ac-tive treatment and their parents; B) review of health re-cords of deceased patients; and C) surveys with bereavedparents about the quality of their children’s end-of-lifecare. Baseline data will be collected through each of the16 pediatric oncology programs from January to April2015, to provide a cross-sectional view of the quality ofpalliative care prior to the EPEC®-Pediatrics roll-out.The same data will be collected again from Septemberto November 2016 to determine the impact of the roll-out on care quality.Sample and procedure: A) Surveys during active treatmentParents of children with a cancer diagnosis who are re-ceiving treatment through one of the 16 pediatric oncol-ogy programs in Canada will be invited, along with theirchild, to complete a survey about symptoms, quality oflife, and care quality. Parents will be eligible to take part ifthe child is less than 19 years of age, has a cancer diagno-sis, and they are able to understand and read English orFrench. Parents will be excluded if the child is disease-freeand has not received cancer-directed therapy in the last3 months or if the health professional involved in theircare feels the family should not be approached for re-search participation at this time (e.g., a recent relapse, dif-ficulty coping with child’s illness, etc.). Children agedseven years or older who meet the same criteria as theparents will be invited to complete their own survey aboutsymptoms and quality of life.The Parent Survey has been adapted from ‘The Sur-vey About Caring for Children With Cancer’ (SCCC)[9, 31, 32] and the ‘Quality of Children’s End-of-LifeCare Instrument’ (QCECI) [33]. The SCCC, developed byone of our co-investigators (JW), is a widely used compre-hensive, self-administered survey that evaluates parents’perceptions of the child’s illness and care quality. It was ori-ginally developed from a literature review and focus groupswith parents and health professionals to identify key do-mains, and underwent pretesting to assess content, word-ing, response burden, and cognitive validity [9, 31, 32]. TheQCECI was developed in a similar manner as the SCCCand tested for reliability and validity by one of the co-PIs(KW), with bereaved mothers [33]. It has also been adaptedand used with parents prior to the child’s death to assesscare quality. The Parent Survey will take approximately15-30 min to complete.The Child Survey consists of the ‘Memorial SymptomAssessment Scale’ [25, 26] and the ‘Pediatric Quality ofLife Inventory’ (PedsQL™) 4.0 generic module [34] to as-sess symptoms and quality of life as well as questionsasking how often they are asked about symptoms andquality of life by health professionals. The Child Surveywill take approximately 15-20 min to complete.MASTER FACILITATORS5 across CanadaTRAINERS3-5 health professionals at each of the 16 pediatric oncology programs who will form a Regional Team(48 to 80 Trainers in total)END-USERS40+ health professionals who provide care within the region associated with each of the 16 pediatric oncology programs(numbers will vary by region but we expect a minimum of 600 End-Users to receive some portion of the EPEC-Pediatrics curriculum across Canada)Fig. 1 Dissemination GoalsWidger et al. BMC Palliative Care  (2016) 15:12 Page 5 of 9Eligible children and parents will be approached dur-ing an inpatient stay or regular clinic visit by their pri-mary nurse or other health professional actively involvedin their care to see if they are interested in learningmore about our study. If so, the Research Assistant (RA)will meet with the parent and child to provide furtherinformation about the study. Assent/consent will be ob-tained from eligible children and parents. If both parentsare present, they will be asked to choose one parent tocomplete the survey. If the child is less than seven yearsold or if the child does not wish to complete a survey,the parent will still be asked to participate in the study.The RA will have hard copies of all assent/consent formsavailable, but the assent/consent forms will also appearin REDCap™ prior to any questions being asked. Submis-sion of the survey signifies assent/consent. Children andparents who agree to take part will be given the optionof completing the survey with the RA (i.e., the RA wouldaccess REDCap™, read the questions to the participant,and enter the responses), providing an email addresswhere a link to the survey on REDCap™ can be sent, ortaking a business card that has the survey link writtenon it so the participant can complete the survey on theirown. Children/adolescents will be offered a certificate ofcompletion for taking part in the study. Eligible chil-dren/parents will be approached only once during eachdata collection period to take part in the study; however,a child/parent who was approached during the pre-testperiod (Winter 2015) may be approached again duringthe post-test period (Fall 2016) if they still meet the eligi-bility criteria. Families who take part in both the pre-and post-testing period will not have their responseslinked, as we are interested in cross-sectional data ratherthan longitudinal.Sample and procedure: B) Health record reviewsHealth record reviews will be conducted for all chil-dren with a cancer diagnosis who received treatmentat one of the 16 pediatric oncology programs anddied in the 12 months prior to the pre-test data col-lection (January 2014 to January 2015) and in the6 months prior to the post-test data collection (Juneto November 2016).Eligible deceased children will be identified throughthe Health Records Department. An on-site RA willreview the health record and enter data directly intoREDCap™. Data collection forms were developed basedon previous health record reviews for children with can-cer [9, 31, 32] and include information on diagnosis, age,location of death, involvement of a palliative care team,time spent in hospital during the last month of life, useof cancer directed treatments, and documentation ofdiscussion of goals of care.Sample and procedure: C) Bereaved parent surveysDuring the pre and post-test period, bereaved parentswill be invited to complete a survey about the quality oftheir children’s end-of-life care. Potential participantswill be identified according to the following inclusioncriteria: 1) Child died following a cancer diagnosis; 2)Child aged 19 years or younger; 3) Parents are able toread English or French. Parents will be excluded if: theyrequested to have no further contact from the hospitalsuch as for bereavement follow-up support. Bereaved par-ents will not be approached about the study until at least6 months have passed since the time of the child’s death.Therefore, in order to achieve the required sample size wewill invite parents whose child died during a 2 year win-dow that ends 6 months prior to the end of the pre-testdata collection period (e.g. Invitation letters would be sentin January 2015 to bereaved parents whose child died be-tween July 2012 and July 2014) and in an 8 month windowthat ends 6 months prior to the end of the post-test datacollection period (e.g. Invitation letters would be sent inJanuary 2017 to bereaved parents whose child died be-tween December 2015 and July 2016).The Bereaved Parent Survey was adapted from theSCCC [9, 31, 32] and QCECI [33] to mirror the surveyused during active treatment, with additional items spe-cific to the quality of end-of-life and bereavement care.Contact information (name and mailing address) of eli-gible parents will be obtained through Health Records. Aletter about the study will be sent to eligible parents fromsomeone who provided care to the family prior to thechild’s death or who is providing bereavement follow-up.The letter will include a description of the study with in-structions to access the survey online for submission viaREDCap™. The letter will also provide contact informationfor a RA at the central study site if the parent wishes tocomplete the survey with the RA by telephone or to re-quest a hard copy to complete and return by mail. Whenthe parent accesses the survey online, the consent formwill appear prior to commencing the survey questionsalong with a list of sources of support and information.Submission of the survey will signify consent. The invita-tion letter will also include a self-addressed stamped enve-lope to be returned to the originating site if the parentdoes not wish to have any further contact about the study(opt-out). If an opt-out letter has not been received, athank you/reminder letter will be sent to all eligible par-ents 3-4 weeks after the initial contact.Sample sizeThe majority of quality indicators are categorical in nature(i.e., proportion of children who die in preferred location,proportion of children/parent who report symptoms inthe severe range); therefore, sample size for this compo-nent of the project was calculated based on categoricalWidger et al. BMC Palliative Care  (2016) 15:12 Page 6 of 9analytic techniques. Specifically, sample size for standardChi-square analysis was conducted and increased by a fac-tor equivalent to the assumed design effect due to theclustering within regions. Given the timeline for the pro-ject and the number of children that die from canceracross Canada in a given year (~200), we will only be ableto collect data on 100 deceased children in the 6 monthsfollowing project implementation. However, retrospectivehealth record reviews and surveys can be completed for alarger number of children at baseline. A prior study exam-ining the effect of unit level interventions across 16pediatric units across Canada, demonstrated moderateintra-class correlations (ICCs) for knowledge outcomes,but negligible ICCs for process and clinical outcomes [35];therefore, a small ICC of 0.01 was used to adjust the sam-ple size estimate to account for clustering within sites. Wewill complete a minimum of 200 health record reviews/surveys at baseline and 100 in the post-implementationperiod across all 16 sites to detect a 15 % difference in out-comes with 80 % power.Data analysisCategorical data (e.g., location of care/death) and continu-ous data (e.g., parent reports of care quality scores) and willbe summarized and descriptively reported using frequen-cies and proportions or means and standard deviations, re-spectively. To identify differences in the quality indicatorsbetween baseline and following implementation, marginalregression models (i.e. Generalized Estimating Equationmodels) will be used to model the outcome on time point(i.e. pre- versus post-test) and account for clustering of out-comes and practices of care within regions. All analyseswill be conducted using SAS v9.3. A p-value of 0.05 or lesswill be used to indicate statistical significance.DiscussionThough the original EPEC™ has been available since1999, evaluation has thus far focused on disseminationoutcomes [20]; there has not been an attempt to meas-ure the impact of EPEC™ on quality of care. However, aswith most education programs for health professionals,the ultimate goal is that education will result in practicechanges and better care for patients. Our study will be asignificant step forward in evaluation of the impact ofEPEC®-Pediatrics both on dissemination outcomes andon care quality at a national level.Our study design and timelines will allow us to ad-equately measure the impact of the EPEC®-Pediatricscurriculum roll-out on self-assessed knowledge improve-ments of health professionals; knowledge transfer anddissemination outcomes; and practice change outcomes,as has been done in the past [20]. However, our studywill be the first to examine the impact on a nationallevel. We have chosen a pre- post-test design to evaluateour intervention in terms of its impact on quality ofcare. A recent systematic review indicated that a train-the-trainer model is effective in improving patient out-comes; however, the length of the intervention and tim-ing of data collection varied widely across studies [22].Therefore, there is little evidence available to determinean optimal length of the intervention or timing for out-come assessment that could be used to guide a strongerdesign, such as a cluster randomized controlled trial. Itis possible that a longer intervention period and a longerfollow-up period for post-test data collection may showgreater improvements in patient outcomes. Additionally,though one of the strengths of EPEC®-Pediatrics is thebreadth of knowledge covered in the curriculum and theflexibility that Trainers have in choosing which aspectsof the curriculum to present to End-Users, this flexibilitymeans that the roll-out may look very different acrossthe participating sites. To address some of the limita-tions we will explore differences in how the curriculumhas been rolled out in each site (e.g., number and type ofeducation sessions, number of End-Users, type and suc-cess of QI projects) and whether these differences areassociated with any differences in quality of palliativecare across sites. This exploration may help to identifysome core components of the curriculum that must beincluded as part of the intervention and may advancethe science such that a stronger design could be used infuture research to roll-out the curriculum to health pro-fessionals who care for children with life-threateningillnesses other than cancer.Our study is powered to detect changes in care quality.However, even if no changes are seen in the course ofour study, measurement of the quality of palliative carefor children with cancer on a national level is an import-ant aspect of our study and will be a significant contri-bution to the field of pediatric oncology and palliativecare. This wealth of data can be used as the basis for fu-ture research and targeted interventions to address spe-cific issues nationally or locally. Ultimately our goal is toenhance the care of all children who live with life-threatening illnesses; we believe this study will be a sig-nificant step forward in achieving that goal.Additional fileAdditional file 1: List of Ethics Approvals. (PDF 182 kb)AbbreviationsEPEC®-Pediatrics: Education in Palliative and End-of-Life Care for Pediatrics;ICC: Intra-class correlation; KT: Knowledge translation; KTE: KnowledgeTransfer and Exchange; PedsQL™: Pediatric Quality of Life Inventory;PI: Principal Investigator; PPC: Pediatric palliative care; QCECI: Quality ofChildren’s End-of-Life Care Instrument; QI: Quality improvement; RA: ResearchAssistant; REDCap™: Research Electronic Data Capture; SCCC: The SurveyAbout Caring for Children With Cancer; TIPS: Tailored Implementation ofPractice Standards..Widger et al. BMC Palliative Care  (2016) 15:12 Page 7 of 9Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsAll authors made substantive intellectual contributions to conception anddesign of this study and manuscript. KW and AR were the lead authorsresponsible for the initial drafting of the manuscript. SF and JW are theoriginal developers of EPEC®-Pediatrics. All authors contributed to the paper,revised drafts critically for important intellectual content, and read andapproved the final manuscript. Each author agrees to be accountable for allaspects of the work in ensuring that questions related to the accuracy orintegrity of any part of the work are appropriately investigated and resolved.AcknowledgementsThis project is funded by the Canadian Partnership Against Cancer. KW issupported by a Career Development Award from the Canadian Child HealthClinician Scientist Program. The development and initial implementation ofEPEC®-Pediatrics is funded by the National Institutes of Health (NIH) (Grant#1R25CA151000-01). We wish to thank our Project Manager, MichelleGoertzen, and our Research Fellows, Drs. Jacqui Duc and Kelly Johnston, fortheir assistance in preparing this manuscript, creating data collection formsin REDCap™ and preparing ethics applications.Author details1Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 130-155College Street, Toronto, ON M5T 1P8, Canada. 2Pediatric Advanced CareTeam, Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G1X8, Canada. 3Department of Pain Medicine, Palliative Care & IntegrativeMedicine, Children’s Hospitals and Clinics of Minnesota, 2525 ChicagoAvenue South, Minneapolis, MN 55404, USA. 4Pediatric Palliative Care Service,Department of Psychosocial Oncology and Palliative Care, Dana-FarberCancer Institute, 450 Brookline Avenue, Boston, MA 02215, USA. 5PediatricPalliative Care Program, The Montreal Children’s Hospital, 2300 Rue Tupper,Montréal, QC H3H 1P3, Canada. 6Pediatric Oncology Group of Ontario, 480University Avenue, Suite 1014, Toronto, ON M5G 1 V2, Canada. 7Brain TumorProgram, Division of Hematology/Oncology, Hospital for Sick Children, 555University Avenue, Toronto, ON M5G 1X8, Canada. 8Policy and Clinical Affairs,Pediatric Oncology Group of Ontario, 480 University Avenue, Suite 1014,Toronto, ON M5G 1 V2, Canada. 9Department of Family and CommunityMedicine, University of Toronto, Temmy Latner Centre for Palliative Care,Mount Sinai Hospital, 60 Murray Street, 4th Floor, Toronto, ON M5T 3 L9,Canada. 10Canuck Place Children’s Hospice, Clinical Professor, Department ofPediatrics, University of British Columbia, 1690 Matthews Avenue, Vancouver,BC V6J 2 T2, Canada. 11Department of Hematology/Oncology, Hospital forSick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada.12Pediatric Advanced Care Team, Hospital for Sick Children, 555 UniversityAvenue, Toronto, ON M5G 1X8, Canada.Received: 7 December 2015 Accepted: 19 January 2016References1. 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