FOR APPROVAL. An Assessment to Inform Pediatric Cancer Provider Development and Delivery of Survivor Care Plans

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1 DOI /s An Assessment to Inform Pediatric Cancer Provider Development and Delivery of Survivor Care Plans Echo L. Warner 1 & Yelena P. Wu 1,2 & Claire C. Hacking 1 & Jennifer Wright 3,4,5 & Holly L. Spraker-Perlman 3,5 & Emmie Gardner 6 & Anne C. Kirchhoff 1,3 # American Association for Cancer Education 2015 Abstract Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) for optimal health management, yet clinical delivery of SCPs varies. We evaluated oncology providers familiarity with and preferences for delivering SCPs to inform the implementation of a future SCP program at our institution. From November 2013 to April 2014, oncology providers from the Primary Children s Hospital in Salt Lake City, UT, completed a survey (n=41) and a 45-min focus group (n=18). Participants reported their familiarity with and training in SCP guidelines, opinions on SCPs, and barriers to delivering SCPs. As a secondary analysis, we examined differences in survey responses between physicians and nurses with Fisher s exact tests. Focus group transcripts and open-ended survey responses were content analyzed. Electronic supplementary material The online version of this article (doi: /s ) contains supplementary material, which is available to authorized users. * Echo L. Warner Echo.Warner@hci.utah.edu Cancer Control and Population Sciences Research Program, Huntsman Cancer Institute, 2000 Circle of Hope, Rm 4125, Salt Lake City,UT84112,USA Participants reported high familiarity with late effects of cancer treatment (87.8 %) and follow-up care that cancer survivors should receive (82.5 %). Few providers had delivered an SCP (oncologists 35.3 % and nurses 5.0 %; p=0.03). Barriers to providing SCPs included lack of knowledge (66.7 %), SCP delivery is not expected in their clinic (53.9 %), and no champion (48.7 %). In qualitative comments, providers expressed that patient age variation complicated SCP delivery. Participants supported testing an SCP intervention program (95.1 %) and felt this should be a team-based approach. Strategies for optimal delivery of SCPs are needed. Participants supported testing an SCP program to improve the quality of patient care. Team-based approaches, including nurses and physicians, that incorporate provider training on and support for SCP delivery are needed to improve pediatric cancer care. Keywords Survivorship. Pediatric. Survivor care plan. Survivorship care plan. Provider education The Institute of Medicine (IOM) and the President s Cancer Panel identify comprehensive follow-up medical care to long-term cancer survivors a national priority [1]. Childhood cancer survivors, because of their increased risk for late effects of cancer therapy, require comprehensive survivor-focused health care throughout their lives [2]. In 2002, the Children s Oncology Group (COG) released long-term follow-up guidelines for survivors of childhood cancers [3]. One essential component of comprehensive survivor care recommended by leading cancer organizations is a survivor care plan (SCP) [1]. SCPs, typically a one to two page document, review the patient s treatment, consolidate recommendations for cancer prevention and early detection, and address treatment-induced late effects. Ideally, an SCP will help facilitate care coordination between oncology and primary care providers (PCPs) [1]. Division of Public Health, University of Utah, 375 Chipeta Way, Salt Lake City, UT 84108, USA Department of Pediatrics, University of Utah, 295 Chipeta Way, Salt Lake City, UT 84108, USA Huntsman Cancer Institute Pediatric Cancer Late Effects Clinic, 1950 Circle of Hope, Salt Lake City, UT 84112, USA Primary Children s Hospital, 100 No. Mario Capecchi Dr., Salt Lake City,UT84113,USA Intermountain Healthcare, 36 S State Street, Salt Lake City, UT 84111, USA

2 Although recommendations for SCPs have been in place for nearly a decade, competing patient, health care system, and clinical needs make it challenging to develop standard procedures for SCP delivery [1]. In pediatric oncology settings, research is limited on the strategies used for delivering SCPs [4]. While the Passport for Care SCP Internet application based on COG guidelines is freely available to children s hospitals [5], SCP utilization and distribution to pediatric oncologypatientsisstillnotwellunderstood[6]. To the best of our knowledge, there have been no large evaluations to determine how widespread the distribution of SCPs is to pediatric cancer patients. One assessment of young adult cancer survivors that included participants diagnosed in childhood found that 55 % reported not having an SCP [7]. While most pediatric cancer survivors who attend a long-term follow-up clinic most likely receive an SCP, the majority of survivors do not attend such clinics [8]. Unlike adult cancer survivors, SCPs are critical for pediatric cancer patients because young survivors may have little or no knowledge of their treatment. Thus, having an SCP is of utmost importance as childhood cancer survivors become responsible for their own care. Also, few adult care providers see pediatric cancer survivors, making the SCP an important tool for guiding their follow-up care [9]. Here, we present results of an assessment that was implemented by our institution to inform the implementation of a team-based (e.g., nurse and physician) approach to developing and delivering SCPs to pediatric oncology patients. SCP development requires a nurse, physician, or other provider to compile the information from a patient s medical record into a treatment summary and SCP document. The delivery process includes the provision of the SCP document to patients who are finishing their primary cancer treatment. In the adult cancer literature, several barriers exist to the development and delivery of SCPs to patients including: insufficient time and resources for developing SCPs, unclear standard of care guidelines for delivering SCPs (e.g., timing of SCP delivery), and lack of training among oncology providers [4, 10, 11]. However, the extent to which these issues exist in pediatric cancer settings is unknown. Differences between nurses and physicians regarding their respective willingness and preparedness to develop and deliver SCPs are also unexplored in the pediatric cancer literature. Given the critical need for all pediatric cancer patients to receive an SCP, our study provides new information on pediatric oncology providers familiarity with and training on SCP guidelines and tools, their current use of and support for future delivery of SCPs to patients, and their report of barriers to providing SCPs. As there is little consensus about the best strategies for cancer follow-up care [12], this assessment can help guide institutions that are developing pediatric cancer SCP programs to identify optimal SCP delivery methods (e.g., team-based vs. nurse- or physician-led). Materials and Methods This study took place from November 2013 to April 2014 with oncology physicians and nurses at the Primary Children s Hospital (PCH) in Salt Lake City, UT, and was determined to be exempt research by the University of Utah s Institutional Review Board. Survey Development Four team members with expertise or experience in pediatric cancer survivorship, public health, and pediatric health psychology developed a 25-item survey based on the SCP and late effects literature. The survey was revised with input from a pediatric oncologist and social worker. The final version contained 25 items (both closed- and open-ended) on five domains: (1) demographics and professional experience, (2) current familiarity and training regarding SCP guidelines and tools, (3) current and future support of delivery of SCPs to patients, and (4) barriers to delivering SCPs in a pediatric cancer center setting. The survey is available as an online supplement. Participants and Data Collection Eligible participants were physicians and outpatient clinic nurses from the Division of Pediatric Hematology/Oncology at PCH. Providers were ed to participate in a focus group and survey (online or in person at the focus group). Consent was obtained prior to initiation of the questionnaire and/or focus group. The focus group session consisted of a subset of survey respondents and lasted approximately 45 min. Focus group questions complemented the survey domains, which focused on familiarity with, training on, and support of SCPs; current delivery of SCPs; and barriers to providing SCPs in a pediatric cancer center setting. Mixedmethod approaches that incorporate both quantitative and qualitative data enrich the understanding of a phenomenon [13]. Because research on implementation of SCP programs is in its infancy, mixed-method approaches allow the identification of specific needs from the perspectives of oncology providers that have not been previously explored. We sent the survey to 20 oncologists, 37 nurses, and 15 other clinical staff. These providers were identified by the Pediatric Hematology/Oncology administrative director as those who regularly saw oncology patients or who could be responsible, in part, for delivering SCPs (e.g., pharmacists). Participants reported their specialty, which we categorized into three groups: Oncologists (pediatric oncologist, pediatric oncology fellow), Nurses (nurse practitioner, other nurse), and Other (social worker, pharmacist, etc.). As there were only 6 participants who responded to the survey in the Other group, for the current survey analyses we focus on the oncologists

3 (N=18) and nurses (N=23) (overall response rate=71.9 % (41/57)). Measures Provider Demographic and Professional Experience We examined participants gender (female vs. male) and race (White vs. other) and included participants estimated number of patients seen at PCH per week (<10, 11 20, 21 30, and >30). Lastly, we included time since participants completed their training/education in years (<5, 6 10, 11 15, >15). Familiarity and Training Regarding SCP Guidelines and Tools Five questions assessed awareness of specific guidelines, programs, and tools (yes vs. no) that are relevant to the creation of SCPs. We asked about sources of training for late effects of cancer within the last 5 years (colleagues, meetings/conferences, medical journals, and continuing medical education (CME) activities). Four Likert scale questions ranging from strongly agree to strongly disagree assessed provider support of SCPs. The responses to these questions were categorized as strongly agree/agree vs. other. Participants reported whose role they believed it is to provide an SCP to patients. Current Use of and Barriers to Delivering SCPs We assessed delivery of SCPs, familiarity and referral to the Huntsman Cancer Institute Pediatric Cancer Late Effects Clinic (the primary regional specialty clinic that provides care to pediatric cancer survivors over age 18 years), and current PCP communication regarding follow-up care via six binary (yes vs. no) questions. We asked oncology providers their willingness to pilot test an SCP program. Participants were also asked to report common barriers they thought inhibited the use of SCPs in their clinic. Statistical Analysis Quantitative analyses were conducted in Stata 12 (College Station, TX). Summary statistics of participant demographics and professional experience, familiarity and training regarding SCP guidelines and tools, current and future support of SCP delivery to patients and families, and barriers to providing SCPs were reported. The focus group audio recording was transcribed by a member of the research team. We also analyzed participants responses to two free-response questions from the survey: (1) Pediatric Cancer Late Effects Clinic referral and (2) communication with PCPs about follow-up care. Two members of the research team read the transcript and free-response questions from the survey and performed a deductive content analysis [14]. Discrepancies were discussed and resolved by two members of the research team. Oncology physicians and nurses are both considered essential for generating SCPs [1]. Therefore, as a secondary analysis, we used Fisher s exact tests to compare oncologists and nurses on knowledge of guidelines/tools, sources of training, and support of SCPs. Results There were 18 pediatric oncologists/fellows and 23 nurses who completed the survey (N=41, Table 1). Most participantswerewhite(91.9%),and31.7%hadcompleted their training 10 years ago, though over one third had completed their training more than 15 years ago. Focus group participants included eight oncologists, three fellows, and seven nurses/other staff. Below we report results from the survey, supplemented by qualitative comments from the focus group. Table 1 Survey participants demographic and professional experience Full sample N=41 N % Provider type Oncologists/fellows Nurses Gender a Female Male Race/ethnicity b White Other Average number of patients seen per week < > Time since training completion (years) < > a Gender missing for N=4 b Race/ethnicity missing for N=4

4 Familiarity with SCPs and Related Guidelines and Tools Participants reported high familiarity with the late effects of cancer treatment (87.8 %) and follow-up care that cancer survivors should receive (82.5 %; Table 2). Most providers were familiar with the COG late effects guidelines (73.5 %). While 58.5 % of the full sample of providers were familiar with SCPs/treatment summaries, this awareness was more common among oncologists than nurses (94.4 vs %, p<0.001, not shown). Awareness of Passport for Care (Table 2, 37.5 %) and American Society of Clinical Oncology SCP templates (36.6 %) was low among all participants. Sources of Training Regarding Late or Long-Term Effects of Cancer In Fig. 1, the most common sources of training in the past 5 years included colleagues (65.9 %), meetings/conferences (53.7 %), and medical journals (36.6 %). When we investigated provider type, more oncologists than nurses reported training from colleagues (83.3 vs %, respectively; p=0.05) and medical journals (55.6 vs %, respectively; p=0.05). Current Delivery of SCPs to Patients Few providers had given a patient an SCP (oncologists 35.3 % and nurses 5.0 %; p=0.03; not shown). This was supported in the focus group when one oncologist indicated that treatment summaries were typically provided to patients only upon request: B[The] majority of patients don t get a treatment summary. There may be one or two people that specifically ask for it, and then we give it to them. Close to the end of therapy they do get information about when they need to be coming back for follow up, but they don t getagen- eral summary including Bthis is what happened to you, this is what may happen to you^. It is reinforced multiple times but not written.^ Support of SCPs Support of testing an SCP program was high among participants (95.1 %, Table 2) and was equal between physicians (94.4 %) and nurses (95.6 %) (p=0.99; data not shown). A total of 73.0 % of participants agreed that SCPs are useful tools for both patients and families and 73.0 % also agreed they are useful for health care providers who work with survivors. Related to integrating SCPs into clinical care, oncologistsendorsedthisstrategyasimportantmoreoftenthan nurses (68.7 vs %, p=0.02; not shown). However, nurses in the focus group supported the provision of SCPs as a way to help patients more holistically. This sentiment was reflected as follows: BFrom the nurses standpoint, a survivor care plan is a quality of life issue more than anything else. It should be what s driving their care in some ways, making sure that they are being treated as a whole person, not just getting that MRI and saying that they are clean.^ The majority of participants indicated that oncologists are responsible for providing an SCP to patients (90.2 %), though a substantial proportion also felt that nurses share responsibility for this (68.3 %). Ultimately, participants indicated that providing SCPs to patients would require a team effort as indicated by this nurse s statement from the focus group: BObviously a physician doesn t have time to completely fill out all information for an SCP but a case manager could do those things.^ Barriers to Providing SCPs in a Pediatric Cancer Center Setting In Table 2, top barriers to providing SCPs to patients included: BI don t know enough about SCPs^ (66.7 %), Bdelivering SCPs is not expected^ (53.9 %), Bno one champions SCPs^ (48.7 %), and Bresources including time, staff, money, training aren t sufficient^ (43.6 %). Staffing concerns related to SCPs were echoed by a nurse coordinator in the focus group, BStaffing to make this happen is a huge issue. It s a great idea, but everyone is already stretched to the limit.^ None of the barriers differed between nurses and physicians in statistical tests. However, more nurses (72.7 %) reported lack of knowledge about SCPs as a barrier as compared to physicians (58.8 %; p=0.50, data not shown). Physicians reported lack of resources (52.9 vs % nurses, p=0.34) and reward (23.5 vs. 4.6 % of nurses, p=0.15) as a barrier to SCP delivery (data not shown). The focus group provided additional information on patient-related barriers to SCP provision not asked about in the survey. Participants described difficulty providing SCPs to patients because of the variation in age and development when their patients completed cancer therapy. An oncologist commented: BOne challenge is age because it s so variable. Some finish treatment when [they are] 5 and others when they are 17 or in their early 20 s. There is a nebulous sense of do they still go to [PCH] for survivorship care? Transfer to [an adult hospital]? The age at which therapy stops really has an impact on how difficult it is. Adolescents are starting their own life and they get distracted. Younger kids space out more and [think] my mom just brings me.^ Another barrier described by participants was identifying the appropriate Bwindow for transition.^ Oncology providers

5 Table 2 Familiarity, support, and barriers regarding survivor care plan (SCP) guidelines and tools Full sample N % felt unclear about when an SCP should be delivered to their patients that is, when they were Bnot so relaxed and distanced from [cancer treatment]^ that they minimized risk of late effects, but comfortable enough with the transition from oncology to primary care that they are willing to discuss their long-term health care needs. The final barrier that emerged from the focus group was related to the transition back to primary care for rural patients. Distance from the hospital is particularly relevant for our institution, which serves a large catchment area within the Intermountain West: BWe serve 14 % of the United States land mass in this hospital here people could be living 6 hours away. That requires a fundamentally different approach.^ Participants felt that communicating with PCPs about SCPs was important for patients well-being, but that this was difficult for patients who lived further away from the hospital. One oncologist stated, BBecause we have such a wide population area that we cater to, many pediatricians and other local hospitals know our patients, they get letters from us to communicate what has happened. Disconnect with communication Familiarity with SCPs and related guidelines and tools: Late effects of cancer treatment Follow-up care that cancer survivors should receive a Familiar with Children s Oncology Group late effects guidelines Familiar with an SCP or cancer treatment summary Passport for Care program b American Society of Clinical Oncology SCP templates Support of SCPs: Testing a future SCP program d SCPs are useful for patients and families e SCPs are useful for providers who work with childhood cancer survivors e Integrating SCP delivery into our clinic is a high priority for me e Compensation for preparing SCPs is very important to me e Barriers to delivering SCPs in a pediatric cancer setting c : Idon t know enough about SCPs SCP delivery is not expected No one champions SCPs Resources aren t sufficient (time, staff, money, training) Delivering SCPs is not rewarded Managers don t support SCP delivery SCPs aren t an effective tool a Follow-up care missing for N=1 b Passport for Care missing for N=1 c Barriers to delivering SCPs missing for N=2 d BYes^ to testing an SCP program e Strongly agree/agree with the statement; missing for N=4 doesn t happen so much here locally, but it is probably more of a problem out further away.^ Discussion Research on the implementation of SCPs in pediatric cancer care is needed to guide policy development and to identify optimal methods for SCP delivery. Our study results indicate that delivering SCPs in a pediatric cancer setting is complicated and influenced by many factors, including the delivery system, varying patient needs, and conflicting provider roles. This study is one of the first to report on pediatric oncology providers familiarity with and training on SCP guidelines and tools, their current delivery of SCPs to patients and support of a future SCP program, and their anticipated barriers to providing patients with SCPs. The providers in our study cited unique concerns about providing SCPs to pediatric oncology patients, such as the large age range of their patients, which complicates SCP

6 Fig. 1 Sources of training regarding late or long-term effects of cancer. CME continuing medical education Sources of training regarding late or long-term effects of cancer delivery. While oncology providers value and are supportive of SCP delivery, there are certain barriers to SCP development in the pediatric population that mirror the adult survivor setting, such as staff and time barriers. Overcoming these barriers in a pediatric oncology setting is of great importance due to the lifetime need for follow-up care for pediatric cancer patients. Many pediatric oncology survivors report little knowledge of their cancer and treatment, making an SCP a critical tool as they become responsible for their own care [15, 16]. Also, adult health care providers report knowledge gaps in how to care for pediatric cancer survivors [9], meaning that SCPs are an important tool for guiding providers as well. Despite generally agreeing that SCPs are important, few providers at our institution reported consistently providing SCPs to patients. Our focus group helped to clarify relevant barriers such as the need for different SCP strategies related to the age of patients ranging infants to mid-20s which is a challenge for providers making follow-up recommendations (e.g., whether teenagers are ready to take ownership of an SCP) and has been reported in other studies [10]. Providers also reported confusion about when in the care process to give a patient and family an SCP. While there is little research on preferred timing for SCP delivery to pediatric survivors, one adult-focused study found that both PCPs and patients thought that receiving an SCP three to six months after oncology treatment ended was desirable [4]. Also, at our institution, many patients travel for cancer-related care, meaning that oncology providers experience difficulty connecting with their patients local providers. We will investigate several of these issues Percent Colleagues Meetings/Conferences Medical Journals Other CME Activities related to SCP timing and strategies to connect patients with local physicians as we deploy our SCP program. Based on our assessment, we are developing a team-based approach where both nurses and oncologists will be involved with SCP provision to patients. This is specifically informed by our findings that physicians were seen as the provider who should direct the development of an SCP, with nurses (i.e., nurse coordinators) also playing a key role, consistent with recent research and IOM recommendations [1, 17]. In our assessment, a main barrier to SCP delivery was not having an SCP champion in the clinic. We are working with two provider champions a nurse and physician who have consistently advocated and led SCP delivery at our institution to act as leaders in this program. In our team-based approach, clear expectations of SCP development will be given to the involved providers. Nurse coordinators will be tasked with starting the development of an SCP for relevant patients and working with the attending oncologist to ensure that all essential elements of the plan are completed. Then, the physician will be tasked with delivering the SCPs to patients and providing an overview of it as a tool. Additionally, our pilot program will include training and education on guidelines for all providers due to the lack of SCP knowledge cited by participants. Not surprisingly, providers noted limitations in clinical resources and time as barriers to developing and delivering SCPs. Previous studies have used electronic medical records (EMRs) to reduce the time and resources required to compile SCP information [18], making this an important area to explore for reducing the time and resources required to compile

7 SCP information. EMRs are considered an essential element of major improvements in quality of care [19]. The average time of synthesizing information into a care plan ranges from 60 to 90 min [4, 20]. To improve the development of SCPs, EMR tools could include reminders for providers to start developing an SCP while the patient is still in treatment, spreading the work over time and allowing for input from a team of providers [4]. However, there are considerable challenges to utilizing EMRs to develop SCPs. Barriers such as time, cost, maintenance, coordination of EMRs across medical centers, and lack of guidelines for implementing and utilizing EMRs for SCP development still exist [1]. The use of EMRs in SCP development can be enhanced by partnering with computer programming specialists to strategize how to compile treatment summaries and SCPs [18, 21]. Our institution is exploring ways to automatize SCP information in a new EMR system that will be launched over the next year. At the end of cancer treatment, most patients transition back to PCPs for the majority of their medical care. However, childhood cancer survivors are less likely to receive proper follow-up care in a primary care setting, emphasizing the need for coordination between PCPs and oncology providers [9]. Developing appropriate strategies for SCP delivery should include patients PCPs to ensure better management of care. Yet, coordination with PCPs can be challenging for a variety of reasons. Our catchment area includes patients throughout the geographically disparate Intermountain West, and providers in our focus group reported being less familiar with PCPs from rural areas. PCPs in rural areas may especially benefit from being provided an SCP for their patients. Utilizing SCPs to coordinate delivery of tailored care may potentially help reduce the quality of care concerns that are experienced by rural childhood cancer survivors [22]. There are several limitations to this study. This needs assessment was conducted in a single hospital setting. However, PCH is the primary pediatric cancer center in the Intermountain West with a large catchment area. Our results may be applicable to other institutions with large geographic catchment areas. Further, the baseline awareness and knowledge of SCPs elicited from our participants are likely to be similar to those of providers at other hospitals that are developing SCP services; however, our findings should be confirmed at other institutions. We used general terms to describe sources of training (i.e., colleagues) and familiarity with pediatric SCP guidelines and tools. Future studies are needed that include more specific detail on useful strategies for training (i.e., integrating SCP training into grand rounds) and that examine whether correlates (e.g., knowledge of COG guidelines) of SCPs differ. In addition, we only used dichotomous measures of familiarity with SCP guidelines. More detailed information on pediatric oncology providers knowledge of SCP guidelines is needed to inform educational interventions. Also, comprehensive feedback from other providers who interact with oncology patients, such as social workers, psychologists, and PCPs, along with the perspective of patients and their families, is recommended for future studies. In summary, this study of oncology providers SCP practices can inform other organizations that are formulating new or revamping existing SCP delivery processes for pediatric cancer survivors. By identifying potential barriers to SCP delivery, such as lack of information, training, and resources, these concerns may be addressed before they escalate into major obstacles to SCP provision. Our findings suggest that team-based strategies that incorporate provider training on SCP delivery and developing strategies for more consistent SCP use are needed to improve pediatric cancer care. Future research assessing the costs of SCP delivery is necessary to support reimbursement and insurance coverage of SCPs in order to make this a viable method for long-term pediatric cancer care. Acknowledgments We acknowledge the Hyundai Hope on Wheels Foundation as the primary funding source for the study and thank the clinical and office staff at the Division of Hematology/Oncology at Primary Children s Hospital for participating. Additional support comes for the Huntsman Cancer Institute and Huntsman Cancer Foundation. ConflictofInterest disclose. References The authors have no conflicts of interest to 1. Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. Institute of Medicine, The National Academies Press, Washington, DC 2. Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H et al (2004) Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. 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