Healthcare provider perspectives on pediatric cancer survivorship care plans: a single institution pilot study

Abstract

Purpose

Survivorship care plans (SCPs) are used to facilitate communication between oncology and primary care providers (PCPs) after cancer treatment and to assist cancer survivors with healthcare decisions. We evaluated pediatric oncology providers’ experiences creating and delivering SCPs. We also evaluated PCPs’ opinions of SCPs.

Methods

Together, oncology nurses and oncologists created individualized SCPs for leukemia patients treated at a children’s hospital in Utah, with nurses in charge of inputting the majority of SCP content. We surveyed providers after each SCP was completed. We also mailed SCPs to PCPs with a survey on SCP content and their knowledge and comfort level caring for cancer survivors. Descriptive statistics were used to summarize survey content.

Results

A total of 6 nurses and 8 oncologists created 21 SCPs. On average, nurses assisted with 3.5 SCPs and spent 209 min (range 100–600 min) on completing their sections of each SCP, whereas oncologists assisted with 2.6 SCPs and spent 47.4 min (range 15–120). For most SCPs, there was agreement that they should be shared with PCPs (nurse surveys 71.4%, oncologist surveys 100%). Of the 15 participating PCPs, only 28% felt prepared to manage long-term effects in pediatric cancer survivors. They agreed that the SCP would improve communication with their patient’s oncologist (80%) and their knowledge for future care (100%).

Conclusions

SCPs require substantial clinician time to create, but are seen as useful by PCPs. PCPs require specific guidelines and resources concerning ongoing care for pediatric cancer survivors.

Introduction

The population of long-term pediatric cancer survivors is in-creasing as the 10-year survival rate for many pediatric cancers now exceeds 80% [1–5]. Therapies that save the lives of young cancer patients can also create chronic health problems which persist years after the completion of cancer treatment, including impaired pulmonary, cardiac, endocrine, and nervous system function [5–11]. As such, early and regular follow-up care is needed to manage the long-term health of childhood cancer survivors.

By 2025, the need for oncology services is predicted to outweigh the supply of cancer specialists, suggesting that cancer specialists will not be able to cover all survivorship care needs [12]. Due to this oncoming shortage, there is an urgent need to better educate and incorporate primary care providers (PCPs) into follow-up care [13]. As there is no standardized model of long-term follow-up care for pediatric cancer survivors, oncologists and PCPs may have different priorities and abilities for managing survivorship care [14]. Oncologists are typically most familiar with long-term effects caused by cancer treatment. As such, a need exists for integration of PCPs into survivorship care through clear communication by oncologists of potential long-term effects and surveillance strategies as survivors transition into a primary care setting after cancer treatment [15].

Survivorship Care Plans (SCPs) are an avenue to improve health care delivery for cancer survivors and bridge the communication gap between oncologists and primary care. SCPs are a detailed plan provided to survivors and providers that summarize cancer treatment and recommendations for follow-up care. The National Academy of Medicine recommends that each cancer survivor receive a SCP at the end of treatment [16, 17]. SCPs were designed to facilitate the transition from oncology providers to PCPs [18], but there is limited evidence demonstrating their usefulness in improving health care delivery [19]. Organizations, including the European Society for Paediatric Oncology’s Survivorship Passport (SurPass) and Passport for Care (PFC) from the Children’s Oncology Group (COG), have created tools that help physicians generate SCPs. Research conducted at COG affiliated clinics using PFC reported that SCPs have been integrated into clinic flows, which enhanced the conversations providers were having with patients and helped increase provider adherence to follow-up guidelines [20]. Within Europe, SurPass has been tested in Italy with success and is beginning to be implemented in several more countries [21]. However, little is known regarding pediatric oncology providers’ experiences with SCP creation and delivery and PCPs experiences with them.

In this paper, we explore the feasibility of implementing SCPs in a pediatric oncology clinic. Specifically, we report on 1) the experience of pediatric oncology nurses and oncologists in creating personalized SCPs for pediatric leukemia survivors, 2) PCPs’ comfort in managing the health of pediatric cancer survivors, and 3) the utility of SCPs for PCPs who care for survivors. In doing so, we fill a gap in the literature on pediatric health care professionals’ experiences with SCPs. Previous studies, conducted with pediatric survivors and their parents, including work reported by our team, have shown that SCPs are well received and are seen as a useful tool to guide decisions about their child’s health care [22, 23]. Here, we extend on this literature to describe provider experiences with SCP creation and delivery in a pediatric oncology clinic and make recommendations for improving oncology provider and PCP experiences with SCPs.

Materials and methods

This study was an SCP pilot intervention conducted in the outpatient hematology/oncology clinic at Primary Children’s Hospital (PCH) in Salt Lake City, Utah. PCH is the only COG institution in Utah and is part of Intermountain Healthcare, a large system of 23 hospitals and clinics throughout Utah and Idaho. PCH treats the vast majority of pediatric cancers in the state of Utah and serves as the primary pediatric tertiary care hospital for the Mountain West, including parts of Idaho, Wyoming, Nevada, Colorado, Arizona, and Montana [24]. The study ran from September 2015 to June 2017. We obtained feedback from multiple perspectives including pediatric cancer survivors, their parents or guardians, as well as the nurses and oncologists who created the SCPs and the survivor’s PCP. For the current report, we focus on feedback from providers as the parent/survivor results are reported elsewhere [23]. All study procedures were approved by the University of Utah’s Institutional Review Board.

Survivorship care plan development

We developed the SCP template based on existing SCPs created by Passport for Care and the American Society of Clinical Oncology [25–27]. We elicited feedback on the plan’s layout and content from an oncology patient and family advisory board, PCPs, and oncology nurses and oncologists at PCH [28]. While designing the SCP template, the research team used feedback from the providers to create a template that was esthetically appealing, brief, and informative. We finalized the SCP template with input from a pediatric psychologist, graphic designer, health communication expert, and PCPs. The finalized SCP template included 16 sections: (1) recommended medical follow-up, (2) recommended psychosocial follow-up, (3) vaccinations, (4) provider contact information, (5) problems or concerns, (6) preventive health behaviors, (7) education on other potential health issues, (8) oncology provider team contact information, (9) cancer diagnosis details, (10) cancer treatment protocol, (11) chemotherapy/immunotherapy received, (12) surgery, (13) allergies/adverse drug reactions, (14) radiation received, (15) past complications/toxicities, and (16) current or ongoing problems. All information (e.g., age at diagnosis, treatment type, side effects) included in the patient’s SCP was gathered from electronic health records (EHRs) and/or contacting the patient’s previous providers.

Participants

We included nurses and oncologists from the Pediatric Hematology/Oncology Clinic at PCH who specialized in treating acute lymphoblastic leukemia (ALL) patients at PCH, which was our disease group of interest. We focused on ALL survivors because of the standardized treatment regimen and because it is one of the most common pediatric cancers. Participating ALL patients were aged 0–15 at diagnosis; the majority were standard risk (95%) and had completed therapy within the past 12 months. The patient sample is described in detail elsewhere [23]. We designed the process of SCP creation to be shared between nurses and oncologists. The research team obtained survivor/family permission to mail the final SCP to the child’s PCP, along with a consent cover letter and a survey assessing the utility of the SCP content.

Procedures

Nurses and oncologists were consented and then trained on creating the SCPs in a 1-hour session where they were provided with a meal and a manual on creating SCPs. In the training, study staff reviewed the SCP template and explained each section, provided information on navigating the electronic medical records, shared copies of the COG follow-up care guidelines, and educated providers on how to calculate total doses for chemotherapy and radiation.

Over a 3-month period, the survivor’s primary nurse and oncologist worked together to complete the SCPs. The nurse was responsible for completing the majority of each SCP (14 of 17 sections) including vaccination follow-up, recommended psychosocial care, oncology provider team information, cancer diagnosis details, cancer treatment protocol, chemotherapy road map, related surgery list, allergies/adverse drug reactions, radiation summary, past complications/toxicities, and a list of current or ongoing problems. A short survey was given to the nurses by the study staff after each SCP was created, about the SCP creation process and their ideas on delivery. The oncologist then finalized the treatment information and personalized the SCP with further recommendations. The SCP template also included QR codes that allowed families to view COG late effects guidelines through their smartphones.

The oncologist then delivered the final SCP to the survivor and at least one of their parent(s) at a routine follow-up appointment. We provided oncologists with a script that encouraged them to (1) review what a SCP is with the patient/parent(s), (2) describe how an SCP can be useful, and (3) review the SCP page by page and stop for any questions. The oncologist delivered a paper SCP. If the parent requested an electronic version, the oncologist and study staff would provide the SCP on an encrypted flash drive. Directly after the oncologist met with the family and delivered the SCP, the oncologist completed a short survey about the SCP creation and delivery process. When the survivor and parent(s) returned to the clinic approximately 3 months after the SCP delivery, the oncologist followed up about the SCP. Oncologists would then receive their final survey after meeting with the family. If the oncologist was unable to complete the survey directly after meeting with the family, the survey was completed within the week.

After parents gave permission to contact their child’s PCP (a total of 17 of 21 agreed to share this information and 3 reported their child did not have a PCP), study staff sent the PCP a letter explaining the study, a consent cover letter, the survivor’s SCP, and a PCP survey with a stamped return envelope. The study staff contacted the PCP if their survey was not returned within 2 weeks to follow-up with the survey.

Measures

We obtained demographic data on the oncology and primary care providers in the surveys, including gender and years of practice from participating nurses, oncologists, and PCPs. We also asked PCPs for their zip code for their primary practice site, which we grouped as rural vs. urban using Rural-Urban Commuting Area (RUCA) codes. RUCA codes are based on population density, commuting time, and urbanization in US census tracts [29]. PCPs also reported whether they were affiliated with an academic institution and the average number of patients they saw per week.

Once the SCP was created, nurses completed a brief survey on the creation process and their thoughts on how SCPs should be delivered. Although nurses were not present for SCP delivery, we wanted their input on the delivery process as they know the families and their circumstances well. After the SCP was delivered to survivors and parents, oncologists completed a survey that was similar to the nurse survey. These surveys were 10 items featuring open-ended, write-in questions about SCP development and delivery (e.g., How could the SCP development process be improved?) and multiple-choice questions on SCP formatting (e.g., “What is your preferred format for giving the SCP to patients and families?” with different response options). We also asked the oncologists how well the survivor’s parent(s) seemed to understand the SCP.

After the 3-month follow-up appointment following SCP delivery, the oncologist completed a final 4-item survey (all open-ended questions). This survey focused on how long the oncologist and family discussed the SCP at that visit, and included questions to see if the oncologist had any further suggestions on the creation and delivery of SCPs now that the process was complete. Nurses did not complete a survey at this time. As some nurses and oncologists participated in the creation of multiple SCPs, we obtained surveys from them for each SCP, as we anticipated each experience being different.

The PCP survey was a one-time 27-item survey featuring multiple-choice (e.g., categories), single-answer (e.g., yes/no), and write-in responses. Questions fell within the following three domains: (1) perceived usefulness of SCP for the PCP and their pediatric cancer survivors (e.g., “How likely or unlikely are you to use this SCP in decisions regarding [patient’s name] follow-up care?”), (2) general questions about health care management of pediatric cancer survivors (e.g., the PCP’s familiarity with COG follow-up guidelines) and their previous experience caring for survivors, and (3) demographic characteristics.

Data analysis

We summarized demographics using descriptive statistics. For the nurse and oncologist surveys, because we had them complete a survey for the creation of each SCP, we report these data as frequencies and percentages using the overall number of surveys as a denominator. For nurse, oncologist, and PCP surveys, the majority of survey questions were yes/ no responses; for these items, we summarized the frequency and percentage that indicated yes. For 5-point Likert response questions, we summarized responses into binary outcomes for analysis (e.g., for questions that asked “strongly agree, somewhat agree, neither agree/disagree, somewhat disagree, strongly disagree” we collapsed items into agree (strongly/ somewhat agree) vs. disagree (neither, somewhat disagree, strongly disagree)). Statistical analyses were conducted using SAS (Version 9.4; SAS Institute Inc., Cary, NC).

Write-in responses were summarized and, where applicable, are reported in text as quotes.

Results

Provider demographic characteristics

Participants included pediatric nurses (N = 6) and oncologists (N = 8) who participated in SCP creation, along with PCPs (N = 15 of 17 responded to the survey) who received copies of the SCPs (Table 1). Most nurses had been practicing for < 15 years (67%) and were female (83%). The majority of oncologists reported practicing for five or more years (76%) and were 50% female. Of the PCP respondents, 66.6% had been in practice for ≥ 10 years, 53.3% saw more than 85 patients per week, and 60% were female.

Table 1.

Nurse care coordinator, pediatric oncologist, and primary care provider demographics

	N	%
Nurse care coordinators (N= 6)
Years of clinic practice
0–15	4	67.0
15+	2	310
Gender
Male	1	17.0
Female	5	810
Pediatric oncologists (N= 8)
Years of practice after medical fellowship
0–4	2	25.0
5–9	3	38.0
10+	3	38.0
Gender
Male	4	50.0
Female	4	50.0
Primary care provider (N=15)
Years of practice after medical fellowship
<10	5	33.3
10–19	5	33.3
≥20	5	33.3
Site setting
Rural	3	20.0
Urban	12	80.0
Academic affiliation
Yes	2	113.
No	13	86.7
No. of patients seen on average per week
30–55	2	113
56–85	5	33.3
> 85	8	533
Gender
Male	6	40.0
Female	9	611.0

Nurse and oncologist experience of the joint creation of survivorship care plans

Nurses and oncologists filled out surveys for each of the SCPs they helped to create and/or deliver. The nurses were asked to describe the SCP creation process and their preferences on the delivery of the SCP. Oncologists took a similar survey after they delivered each SCP to the patients/parent(s). On average, each nurse helped to create 3.5 SCPs and the average amount of time needed to complete their sections of the SCP was 209.8 min (range 100 to 600 min) (Table 2). One survivor’s SCP took 600 min to complete because they had received treatment at multiple locations, requiring the nurse to spend time tracking down records from other clinics. Without this outlier, the upper time range for completion would have been 360 min.

Table 2.

Nurse care coordinator and pediatric oncologist experience of the joint creation and preferences for delivery of survivorship care plans (SCPs, N=21)

	Nurse care coordinator (N = 6)		Oncologist (N = 8)
	Mean	Range	Mean	Range
SCP creation metrics
Average number of SCPs created	35	1–7	2.6	2–4
Minutes spent creating the SCP	209.8	100–600	47.4	15–120
Minutes spent delivering the SCP	–	–	18.3	0–45
Provider experiences with each SCP creation and/or delivery	N= 21 surveysa	%	N= 21 surveysa	%
How SCPs should be deliveredb
Summary consultation at completion of therapy with primary oncologist	7	33.3	17	80.9
Summary consultation at completion of therapy with nurse care coordinator	1	4.8	8	38.1
Mailed/emailed from the cancer care providers office	3	143	11	52.4
Patient friendly written materials	2	9.5	13	61.9
Other	1	4.8	2	9.5
When to deliver SCP to patientb
Before treatment ends	2	9.5	2	9.5
Less than 6 months after end of therapy	14	66.7	15	71.4
6 months to 1 year after end of therapy	–	–	4	19.0
Other	1	4.8	1	4.8
Who SCP should be shared withb
Primary Care Provider	15	71.4	21	100.0
Family members or other caregivers	13	61.9	18	85.7
Other healthcare providers	3	14.3	5	23.8
Child’s school	1	4.8	1	4.8

^aProviders completed a survey for each SCP they created. Nurses completed these surveys after helping to create the SCP; the oncologists completed the survey after delivering the SCP to survivors/parent(s)

^bParticipants could select all categories that applied to these questions; “When to deliver SCP to patient,” had missing responses from nurses

Nurse write-in information focused on factors that created difficulties in SCP creation. Nurses reported that it was most time intensive to create SCPs for survivors who had complicated diagnoses, significant treatment-related complications, or who had received treatment at multiple institutions. For example, one nurse wrote: “This patient had some complications that required surgery and other interventions. Although I knew where to find the information, it took extra time to look at the notes associated with those problems and find dates of onset and resolution.” In particular, several nurses reported that vaccine records were difficult to compile because the information was not always available in the hospital EHR system.

Oncologists were involved with an average of 2.6 SCPs each and spent less time during the creation phase of the SCP, averaging 47.4 min, with as little as 15 min and up to 120 min (Table 2). Oncologists indicated that most survivors/ parents understood everything of what they discussed around the SCP delivery (89.9% of the time, not shown in tables).

A total of 33.3% of the time nurses and 80.9% of the time oncologists agreed that the delivery of the SCP should include a summary consultation with the primary oncologist at the completion of therapy with the survivor and/or parent (Table 2). Across the surveys, there was support for delivering SCPs to survivors/parents less than 6 months after the end of therapy (66.7% nurse surveys; 71.4% oncologist surveys) and that the SCP should be shared with both PCPs (71.4% nurse surveys; 100% oncologist surveys) and family members/parents (61.9% nurse surveys; 85.7% oncologist surveys).

At the follow-up appointment approximately 3 months after the SCP was delivered, the oncologists reported spending 18.3 min on average (range 0–45 min) explaining the SCP to the survivors and their families.

Primary care providers’ communication with oncologists

For this study, the study staff sent the SCPs to the PCPs as opposed to having the oncologist communicate with the PCP. When we asked the PCPs whether they had previously communicated with their patient’s oncologist or oncology team outside of the study activities, 33.3% reported having no contact (not shown in tables). For PCPs who reported connecting with the oncology team, this typically occurred through phone conversations (50% of the time).

Primary care providers’ knowledge and management of childhood cancer survivors

All PCPs (100%) believed that PCPs should play a critical role in ongoing management of pediatric cancer survivors (Table 3). However, only 40.0% reported personally being prepared to evaluate long-term cancer effects and only 28.6% were prepared to manage long-term effects. In addition, 60.0% reported that primary care guidelines for pediatric cancer survivors are not well-defined. Only 15.4% had heard of COG late effects guidelines.

Table 3.

Primary care providers’ (N=15) knowledge and management of childhood cancer survivors

	N	%
Strongly agree or somewhat agree thata
PCPs should play a critical role in the ongoing management of cancer survivors	15	100.0
I am prepared to evaluate long-term effects in pediatric cancer survivors	6	40.0
I am prepared to manage long-term effects in pediatric cancer survivors	4	28.6
Primary care guidelines for pediatric cancer survivors are not well defined	9	60.0
Late effects of pediatric cancer should be managed by oncologists	9	64.3
Familiar with cancer survivorship guidelines and resourcesb
The Children’s Oncology Group late effect guidelines	2	15.4
Regional cancer center’s pediatric cancer late effects clinic	1	7.7
The Passport For Care survivorship care program	0	0.0
The Institute of Medicine report: from cancer patient to cancer survivor lost in transition	0	0.0

^aParticipants could select the following: “strongly agree, somewhat agree, neither agree/disagree, somewhat disagree, strongly disagree”; responses shown here grouped as “strongly/somewhat agree”

^bParticipants selected “yes” as familiar with the guideline resources

Among the 10 PCPs who reported in their survey previous experience caring for a pediatric cancer survivor (not shown in tables), 70% self-reported that they regularly monitored these patients for cancer recurrence and 81% reported that they addressed mental health issues. Yet, only 40% of these PCPs reported screening for late effects and even fewer (20%) assessed young cancer survivors for reproductive/fertility issues.

Primary care providers and survivorship care plans

PCPs were asked to review each SCP section. In Fig. 1, over 90% of PCP’s rated the following information on the SCP as very helpful: oncology team’s contact information, details about the survivor’s cancer diagnosis, the oncologist’s recommended medical follow-up once the patient is transitioned into survivorship care, any allergies/adverse drug reaction(s), and details concerning any surgeries performed during cancer treatment. Fewer than 75% of PCPs reported the following sections as helpful: health problems or concerns, psychosocial follow-up, vaccination records, and radiation information.

Fig. 1.

PCPs’ perceived helpfulness of SCP sections (N=15)

All PCPs agreed that the SCP would improve their knowledge concerning the future care of their patient (Table 4); 80% agreed or strongly agreed that the SCP would improve communication with their patient’s oncologist. All of the PCPs reported being extremely likely to use the SCP in decisions regarding their patient’s follow-up care. The preferred time to receive the SCP was at treatment completion (40%) or at the same time when the patient was given the SCP (40%). The majority (53.3%) of PCPs preferred receiving the SCP directly from the primary oncologist through the mail, although 26.7% were fine with receiving the SCP by email.

Table 4.

Primary care providers’ (N=15) perceptions of and preferences for survivorship care plans (SCPs) for childhood cancer survivors

	N	%
Strongly agree or somewhat agree that SCP will improvea
My knowledge for future care of this patient	15	100.0
Communication between me and my patient’s oncologist	12	80.0
Likelihood of using SCP in decisions regarding patient’s follow-up careb,c
Extremely Likely	7	50.0
Likely	7	50.0
Preferred time to receive SCP
At the time of treatment completion	6	40.0
When the patient currently receives the SCP	6	40.0
At patient’s first visit after treatment completion	3	20.0
Preferred method of receiving SCP
Email from patient’s oncologist	4	26.7
Mail from patients oncologist	8	53.3
Fax	2	13.3
Incorporate in current electronic health record system	1	6.7

^aParticipants could select: “strongly agree, somewhat agree, neither agree/disagree, somewhat disagree, strongly disagree”; responses shown here grouped as “strongly/somewhat agree”

^bMissing one response

^cExtremely likely to extremely unlikely response scale; participants only selected “extremely likely” and “likely”

Overall provider impressions of SCPs

The write-in sections of the surveys asked the participants to provide any additional thoughts on SCPs. In these responses, we found that oncology nurses, oncologists, and PCPs indicated that SCPs would be useful for families and helpful for survivorship care. Common write-in responses for oncology providers included, “Survivorship care plans are essential and should be created and distributed to all patients” (oncology nurse) and “Love the extra info, QR codes, and coordination involvement” (oncologist). The oncologists noted that the family’s reactions to the plans were positive, while also acknowledging that the plans took nurses a long time to prepare. One oncologist wrote, “I think the plans are a wonderful resource for families and primary care providers and are very well received; however, presently the leukemia care coordinators spend a significant amount of time preparing the plans.” PCPs also gave very positive write-in feedback on the SCPs. One PCP wrote “I love this. I want one on every patient!”

Discussion

SCPs are an important tool for pediatric cancer survivors, their families, and their healthcare providers to ensure appropriate survivorship care and care coordination after cancer treatment. Our results indicate that the creation of SCPs for pediatric ALL patients is a time-consuming process for oncology providers, yet they are generally seen as worthwhile by both oncology nurses and physicians, as well as the PCPs that care for many of these patients into survivorship. To our knowledge, this is the first study to report the joint perspectives of pediatric oncology providers’ experiences with the development of SCPs along with PCP satisfaction with the SCPs.

The time required to create individualized SCPs has been described as a main obstacle in their widespread adoption [30, 31] and our study found similar concerns. Despite sharing the creation of the care plan with oncologists, nurses in our study reported a substantial amount of time required to create the SCPs. The aggregate time for each SCP (nurse and oncologist combined) ranged from 115 to 720 min (approximately 2 to 12 hours). Prior studies of adult SCP creation estimate that most plans required at least 1 hour and up to 4 hours [32]. Several of our survivors had been cared for in multiple healthcare systems, which added to the complexity of SCP creation, requiring the nurses to gather medical records from multiple institutions, explaining the substantial time spent by these providers.

To decrease the burden of time needed to create an SCP, pediatric oncology clinics should adopt the practice of initiating a SCP earlier in the treatment process. Requesting and organizing medical records from other institutions, and revising the SCP as needed throughout care, could decrease the amount of time it takes to complete the document at the end of treatment and make SCP delivery more feasible on a wider scale [33]. Other opportunities for improving delivery include Passport for Care (PFC). PFC is based on COG follow-up care guidelines and has digital templates that can auto-populate general follow-up recommendations depending on diagnosis and treatment protocol [34], which should help to ease some of the burden associated with creating SCPs. Automating certain processes should help institutions adopt the recommendation that providers who know the survivor the best create the SCP and to decrease the burden in oncology for creating SCPs [35].

For each completed SCP, nurses and oncologists reported on their experiences or opinions with the creation and delivery process. While there were a range of opinions, there were some consistencies that programs developing SCPs can consider. Most surveys indicated that SCPs should be delivered less than 6 months after the end of therapy, although nurses were less likely to indicate that this delivery needed to involve the primary oncologist. A majority of the surveys indicated that SCPs should be shared with PCPs and family members. As such, SCPs may be most useful when given to patients during their initial, off-therapy follow-up clinic visit and created in a format (e.g., electronic) that can be easily shared with other providers and family members.

Along with creating SCP formats that are easy to read for PCPs, research has shown that PCP knowledge increases when they receive a brief educational program regarding SCP existence, content, and potential uses for SCPs [36]. The PCPs we surveyed reported a low level of knowledge of COG’s late effects guidelines and less than half felt prepared to manage the care of childhood cancer survivors. Together, these findings suggest that PCPs may need education and specific recommendations for cancer survivor follow-up care. About half of PCPs enrolled in our study preferred to be mailed a hard copy of the SCP. However, as part of our study procedures, we did not have oncologists follow-up with the PCPs. Future efforts should consider having oncologists call or email PCPs to orient them to their patient’s SCP document and to answer questions about managing survivor health care. This practice could also further connect the PCP to the oncology team that treated their patient and facilitate communication between the two, primary care and oncology providers.

There is limited evidence showing SCPs’ usefulness in improving healthcare delivery, with one recent RCT demonstrating that SCPs do not necessarily increase the adherence to recommended surveillance among childhood cancer survivors [37]. However, there may be other aspects of care that could improve due to SCPs that have not been captured in earlier assessments, such as improved care coordination between providers. All PCPs in our study reported that having the oncology provider team’s contact information listed on the SCP was helpful and 80% agreed that having the SCP will improve communication between themselves and their patient’s oncologist. SCPs could also be a tool that oncologists use to reach out to the PCPs to help establish team-based survivorship care for their mutual patient. SCPs as a communication tool may be particularly helpful for survivors in communities where survivorship clinics are scarce or expensive to travel to by helping facilitate care transitions after treatment ends [38].

We included a section on vaccines in our SCP due to input from pediatric oncology providers at PCH. Starting or restarting age-appropriate care after cancer treatment, such as childhood vaccines, is important for cancer survivors. However, PCPs we surveyed reported the vaccine records as one of the least helpful sections of the SCP. At the same time, it was very challenging for nurses to track down vaccine records to populate the SCPs. At PCH, recommendations for vaccines after cancer treatment vary according to previous vaccination history, treatment, and age. State immunizations registries could be a potential alternative for providers to obtain previous vaccine records for SCP completion, although the comprehensiveness of these records can be limited in some states.

Certain limitations should be considered when interpreting this study’s findings. First, this pilot study was conducted in a single hospital setting. PCH is the primary pediatric cancer center in the Intermountain West with a large catchment area and so our results likely apply to other institutions with similarly large geographic catchment areas. Second, as a pilot study, the sample size of providers is small and we restricted our participants to a single disease group (ALL). When creating SCPs for other disease groups, patients who have relapsed, or who have had multiple types of cancer, more complex SCP documentation may be required. Lastly, we were focused on understanding the feasibility of generating and providing SCPs to patients. With our limited sample size, we were unable to examine how provider preferences for delivery changed as they worked on SCPs or to delve into how comprehensive the SCP delivery was. Further research should consider examining oncologists’ experiences over time, tracking their conversations with patients about SCPs, and training them on how to discuss issues like fertility and second cancer risk while delivering the SCP.

In summary, this study can assist other pediatric oncology institutions as they create their own SCP processes, including the important step of sending SCPs to their patient’s PCP. Our findings suggest that SCPs are not only useful for survivors and families for directing survivorship care [23], but may be incredibly helpful to PCPs. SCPs can be used as a way to open up communication between the primary oncologist and the PCP as pediatric cancer patients transition into survivorship care. To make SCP delivery viable and regular, EMR systems need to incorporate auto-populating SCP programs and further research is needed to support reimbursement and insurance coverage for provider time during SCP creation.