Abstract
Purpose
To enhance survivorship care, we explored primary care providers’ (PCPs) preferences and needs related to treatment summary and survivorship care plans (TS/SCPs) as a communication tool and PCPs’ general thoughts related to barriers in managing the care of cancer survivors.
Methods
We conducted semi-structured qualitative interviews via video with PCPs within primary care practice networks in the Pacific Northwest. A codebook was developed with the interview guide as a template. Directed content analysis was used to analyze PCP reported challenges, supports needed, and TS/SCP feedback.
Results
Qualitative interviews were conducted with 18 PCPs. The majority were female (72%) and non-Hispanic White (94%), with 56% from urban areas and with varied amounts of time in clinical practice (median 4.5 years, range 0.5–47). PCPs reported common challenges caring for cancer survivors (e.g., unsure what surveillance is needed) and supports needed to improve care (e.g., further PCP education). PCPs also described preferred information to include in TS/SCPs (e.g., surveillance schedule) and format (e.g., in the electronic health record). They also reported that e-consultation could be useful in communication with other health care providers about any questions,
Conclusions
PCPs want further education and support about cancer surveillance guidelines and managing long-term effects in survivors. Having TS/SCP information easy to find in the EHR was mentioned by the PCPs as something that would improve their care of cancer survivors.
Implications for Cancer Survivors
Providing PCPs with more education and tools in the EHR could lead to improved care of cancer survivors.
Keywords: Primary care provider, Cancer survivorship, Treatment summary and survivorship care plans
Background
Due to advances in early detection and treatment, there were more than 18 million cancer survivors in the USA in 2022 and this number is expected to grow to 26 million by 2040 [1]. Cancer survivors are often at increased risk for certain late effects such as cardiotoxicity and cardiometabolic abnormalities compared with the non-cancer population [2]. Secondary malignancies are also a concern for cancer survivors [3]. Two-thirds of cancer survivors surveyed by the national Behavioral Risk Factor Surveillance System reported that they received most of their care from primary care providers (PCPs) [4]. While there is a growing need for more PCP integration in cancer survivorship care, oncologists are uncertain about how and when PCPs should be involved in survivorship, and they have a limited understanding about the role and expertise of primary care in this area [5]. When asked about their comfort level in caring for childhood cancer survivors, general internists reported that they were ‘somewhat uncomfortable’ and also reported a lack of familiarity with surveillance guidelines [6]. Many PCPs themselves report a lack of confidence in providing care for cancer survivors [6, 7]. In a systematic review of PCPs and cancer survivorship, more PCPs reported confidence in managing psychosocial effects rather than physical effects [8].
The National Standards for Cancer Survivorship Care examined three different domains: health system policy, processes, and evaluation/assessment to improve quality care with ten indicators for each domain [9]. This was a joint effort with the National Cancer Institute and the Department of Veterans Affairs with a goal of setting standards of care in cancer survivorship. There are health informatics barriers in addition to gaps in PCP’s knowledge and confidence in caring for cancer survivors. Systems level issues such as how best to utilize the electronic health record (EHR) have yet to be optimized.
Treatment summaries and survivorship care plans (TS/SCPs) are recommended for all cancer survivors and should include the following information [10]: (1) cancer type, treatments received, and their potential long-term effects; (2) information about screening and preventive evaluations and their timing; and (3) recommendations about lifestyle practices. When used in shared decision making, TS/SCPs may increase communication between oncologists and PCPs [11]. However, a majority of cancer programs face barriers to implementing delivery of TS/SCPs (time and effort to create and disseminate) and thus are not providing them [12, 13]. Use of health informatics reduces barriers to generating TS/SCPs [14]. To date, research testing delivery of a printed TS/SCP, without follow-up to personalize the application of the information to the individual cancer survivor, has not found positive outcomes with regard to health care adherence or distress, although survivors may report feeling positive about having received TS/SCPs [15, 16]. Much of the work to date has focused on cancer survivors, and less work has been done with PCPs and TS/SCPs.
We wanted to gain insights on the needs of PCPs and their thoughts about what would be useful to them in caring for cancer survivors. The goals of the current study were to (1) identify challenges to caring for cancer survivors reported by PCPs, (2) understand PCPs’ experiences with TS/SCPs, and (3) obtain information from PCPs about what can be done to ease the transition from oncology back to primary care and what tools, in particular related to the EHR, that can be useful.
Methods
Design, setting, and participants
COREQ guidelines were followed for this qualitative study [17]. Eligibility criteria included the following: currently working as a PCP, English-speaking, and able to use a computer, smartphone, and/or tablet for up to 60 min at a time. PCPs were recruited through two organizations, the WWAMI (Washington, Wyoming, Alaska, Montana, and Idaho) region Practice Research Network (WPRN) and the Fred Hutch Office of Community Outreach and Engagement (OCOE). The WPRN is a primary care practice-based research network of clinics and clinical organizations in the 5-state WWAMI region. The OCOE leads community health equity efforts for Fred Hutch and facilitates community-partnered research as well as recruitment and retention of underrepresented participants. Approach emails were sent in partnership with OCOE and the WPRN with three emails sent. In addition, participating PCPs were asked to send the approach email to those in their network to determine their interest in the study. We used purposive sampling to enroll PCPs with varied time in practice and urban/rural practice.
Data collection
All participants completed self-reported demographic data via REDCap. A clinically trained psychologist with experience in qualitative interviewing (JY, female) conducted semi-structured qualitative interviews via Microsoft Teams with PCPs between November 2023 and January 2024. Interviewees were emailed an information form about the goals of the study. Interviews were approximately 1 h in length. The interview guide consisted of open-ended questions and optional probes about PCPs’ experiences caring for cancer survivors and their preferences and needs related to TS/SCPs (Table 1). Upon interview completion, participants received a $50 Amazon gift card for their time. All interviews were audio recorded and transcribed.
Table 1.
Interview guide
| Domains | Questions |
|---|---|
| Experiences caring for cancer survivors | Approximately what percentage of your patients
are cancer survivors? What proportion of your patients with a history of cancer continue to see their oncologist for yearly checkups? Please tell us about your experience caring for cancer survivors? When has this gone well? When has it been challenging? |
| Experiences with TS/SCPs | Have you ever received one of these documents
or seen one in a patients EHR? What is your experience with treatment summary and survivorship care plans? Are they helpful or unhelpful? Can you explain why you answered that way? If you could design a data sheet that a cancer survivor would share with you after completing their primary treatment, what information would it contain? What would it look like? How do you incorporate treatment summary and survivorship care plans into your care of cancer survivor patients? What are your experiences of patients transferring back from oncology care to primary care once their treatment is completed? |
| Suggestions for improvements | What would help you better care for cancer
survivors? For example, are there any significant barriers in your practice to taking care of cancer survivors? What are your thoughts about a telephone-based consult service? Or an e-consult service? |
Ethics statement
All procedures were reviewed and approved by the Fred Hutchinson Cancer Center Institutional Review Board and determined to be exempt. Informed consent was obtained from all individual participants included in the study.
Data analysis
Interview transcripts and the study codebook were imported into Dedoose (https://www.dedoose.com/) for analysis. We developed the study codebook based on the interview guide core questions including PCP experiences caring for cancer survivors (e.g., when this went well, when this was challenging), supports needed to improve care for cancer survivors (e.g., further PCP education, EHR changes), and desired TS/SCP information (e.g., surveillance schedule, ongoing medications) and desired TS/SCP formatting (e.g., checklist). We used directed content analysis to organize the main categories and sub-categories of data [18, 19]. Study investigators (JY, CW) independently coded all transcripts and met on a weekly basis to resolve discrepancies and to refine the codebook as needed. No new codes were added after the first 12 interviews, indicating data saturation [20].
After study interviews were completely coded, the data were organized by key categories including common challenges reported in caring for cancer survivors, supports needed to improve care of cancer survivors, and feedback about TS/SCPs. Code frequencies were calculated to help understand the salience of study data in each of the categories, and a pre-planned sub-analysis was conducted to examine potential differences in responses between urban/rural practice and PCP time in practice (< 10 years in practice and ≥ 10 years in practice).
Results
Ninety-seven PCPs received invitations to participate in interviews. Among those providers that indicated interest in participating by completing the REDCap survey (n = 22). One person was ineligible due to not being a PCP, and three PCPs did not reply to the emails to schedule the interview. In the final study sample (n = 18), the majority were female (72%) and not Hispanic White (94%), from urban areas (56%) and reported varied time in practice (median 4.5 years, range 0.5–47.0) (Table 2). PCPs estimated the percentage of their patients who are cancer survivors ranged from 5% to at least 33%. PCPs approximated the proportion of cancer survivors on their panel who continue seeing their oncologist annually ranging from “very few” to “all of them.”
Table 2.
Demographic information
| N (%) | |
|---|---|
| Sex | |
| Male | 5 (28) |
| Female | 13 (72) |
| Degree | |
| MD | 16 (89) |
| DO | 2 (11) |
| Length in practice | |
| ≥ 10 years | 8 (44) |
| < 10 years | 10 (56) |
| Practice location | |
| Urban | 10 (56) |
| Rural | 8 (44) |
| Race | |
| White | 15 (83) |
| Mixed Race | 2 (11) |
| Asian | 1 (6) |
| Ethnicity | |
| Not Hispanic or Latino | 17 (94) |
| Hispanic or Latino | 1 (6) |
Common challenges in caring for cancer survivors
Three important challenges in caring for cancer survivors included uncertainty about what surveillance was needed, no available medical records/patient not in the same health system, and confusion over who is doing which aspects of care between the PCP and oncologist. When discussing uncertainty about what surveillance is needed, PCPs described, “Are there things that I am missing in terms of follow-up that should be happening that I’m not doing?” (PCP 14) and “the nagging sense that I’m not doing something I should be doing” (PCP 1). A provider from a rural setting noted “I think especially out here in this kind of semi-rural setting where resources are limited, I think a lot more things fall to the primary care provider…” (PCP 14).
The lack of available medical records frequently co-occurred with patients whose oncologist was not in the same health system as the PCP. A provider from a federally qualified health center shared, “I feel like I lose time because people show up but their medical record hasn’t been transferred to us and so I feel like sometimes a whole appointment is wasted” (PCP 15). Providers described their efforts to obtain information, “…maybe they’re moving from out of state or there’s a language barrier or something else socially…but usually, through sleuthing and a lot of calls, we find the information we need” (PCP 13).
PCPs, in particular those with fewer than 10 years in clinical practice, reported confusion over who is doing which aspects of care for cancer survivors as a significant challenge. Providers expressed, “Is there going to be the survivorship care provider or is that going to be the primary care provider? It’s just another layer of incredible ambiguity…” (PCP 10). PCPs noted that there tends to be more confusion for patients who are farther out from their last cancer treatment. One PCP describes how “..it requires a lot more work on our part to like go through the chart and say like oh, they’re not going to their oncologist because they’re actually not supposed to go to their oncologist anymore, or did they just not know or nobody called them or they missed their appointment?” (PCP 3). Confusion over who is providing care frequently co-occurred with lack of communication with oncology.
TS/SCPs
There were varied experiences and levels of familiarity with TS/SCPs, including some providers who never recalled receiving a TS/SCP. Providers frequently described challenges finding the TS/SCP in the patient’s medical record, “…you have to dig to find it” (PCP 1). They also noted that TS/SCPs “can be just completely unwieldly and unfriendly…they’re way too complex” (PCP 10). Multiple PCPs shared a similar sentiment that they would want TS/SCPs to provide the following information to support their care of cancer survivors including (1) surveillance schedule, (2) treatment timeline and significant events, and (3) long term and late effects. Some providers also noted ongoing medications, delineation of roles between oncologist and PCP, and psychosocial history as elements that could be helpful to include on a TS/SCP. PCPs wanted the TS/SCP to be available in the EHR. They also wanted the information to be quickly accessible and easily digestible (e.g., checklist format as opposed to clinic notes). As questions arise in caring for cancer survivors, PCPs also expressed interest in consultation services with oncology, with the majority preferring an e-consult service and some preferring telephone-based support.
Supports needed to improve the care of cancer survivors
PCPs described both systems-level changes (e.g., EHR workflow, visit length) and provider-level supports (e.g., further PCP education in cancer survivorship) needed to improve care for cancer survivors. In terms of EHR changes, providers noted workflow changes (e.g., automated notification of transition in care from oncology) that could help to facilitate transfer of information from oncology to primary care. PCPs recommended “…at the time a patient is being discharged from oncology, if I were to receive that as a routed chart or something…” (PCP 18). Providers also noted how the EHR can be used to help facilitate care communication among providers.
PCPs emphasized the need for further education about caring for cancer survivors. Interestingly, this was mentioned consistently between both providers with < 10 years in practice and ≥ 10 years in practice. Lack of cancer-specific knowledge was often described as their biggest challenge, “…just not knowing and feeling like I don’t know enough about the different types of cancer or cancer treatments.” (PCP 19). This was also described as a source of anxiety, “There’s always a fear that there’s something that I am not aware of and I don’t know what I don’t know” (PCP 21). PCPs sought to enhance their practice, “As primary care providers we pride ourselves on being conductors…but sometimes the conductors don’t always know what notes to help them play right…I’m always looking for new ways to become a better provider” (PCP 15). Providers noted complexities in terms of cancer as a heterogenous disease and evolving survivorship screening guidelines. PCPs also described potential training opportunities including web-based trainings with CME credits, case forums, and conferences.
Discussion
PCPs want to provide quality care for their patients but may be unclear about how best to do so when it comes to cancer survivors. It can be difficult to know how many patients on their panel are cancer survivors with estimates ranging from 5–33% of their patients as cancer survivors. While most PCPs were in the 5–10% range, those who reported higher percentages worked with more elderly populations or were newer to practice. The PCPs in this study mentioned health system processes that could be improved such as changes to the EHR. Use of different EHRs can add an extra burden to sharing information between different providers and health systems. Interoperability of EHRs could benefit both providers and survivors. Consistent with prior research [21], they also expressed interest in further education about caring cancer survivors and their unique challenges (e.g., late effects and surveillance schedule). Less than 25% of PCPs reported that their training prepared them to treat cancer survivors [22]. In a large survey of PCPs (N = 1421), only 17% of PCPs reported receiving any training in cancer survivorship [23]. For clinician education to be effective in improving guideline-concordant care, the content must match the learning objectives, and education directed at non-physician clinicians, office staff, and administrators can ensure that organizations build the necessary systems to support high quality care [24]. There are existing online resources for PCPs to gain additional knowledge in cancer survivorship developed by Stanford University [25, 26, 27] and Georgetown University [28].
Most of the research with TS/SCPs to date has focused on cancer survivors. The research with PCPs includes their report of never receiving TS/SCPs for most cancer survivors in their care [29] or rarely [6]. However, when received, PCPs described that the TS/SCPs increased their confidence in managing survivorship care [25]. PCPs prefer shorter plans in the range of one to three pages, which is in contrast to the ten page version survivors have been given in some studies [26]. There is also a preference for the TS/SCPs to be part of the EHR, easy to find within the EHR, and tailored for PCPs. In a scoping review of PCPs’ barriers to survivorship care, four were highlighted: (1) lack of communication with oncologists, (2) lack of PCPs’ knowledge of survivorship, (3) lack of time to provide care to survivors, and (4) a lack of guidelines for caring for cancer survivors [27]. TS/SCPs could address the second and fourth issues if constructed in a way to meet PCPs’ needs (e.g., brief, bulleted listings). In addition, while TS/SCPs may help PCPs have more confidence in their ability to care for survivors, they are uncertain about the utility of TS/SCPs [28]. This may be due to not being included in the development and delivery of these plans [30]. PCPs also report that clear delineation of roles and responsibilities between providers (e.g., PCPs and oncologists) would be very helpful [31]. Obtaining their feedback on their needs related to TS/SCPs may promote their use and in turn improve the health of cancer survivors by ensuring they are receiving the health care and surveillance that they need.
Our findings did not suggest a single best approach that can be applied to improve the use of the EHR as a tool to assist PCPs given differing technological infrastructure across practices. We did find that PCPs endorsed the use of e-consult, an asynchronous way to communicate with other health professionals either in the same EHR or with another system. Availability of e-consultation can reduce wait times for specialty care and maintain quality for patients with cancer [32]; however, additional more rigorous research on the effectiveness of e-consults for care of cancer survivors is needed [33]. Changes to TS/SCPs so that they are readily available and actionable could improve their utility for PCPs. An easier and more consistent way to access the oncology records in the EHR could also improve care as many PCPs mentioned the time in oncology as a “black box” and that they wanted to know what kinds of treatments were done as well as any major health issues that occurred during treatment that they may need to follow up on. A timeline feature of when certain surveillance is needed was mentioned in this study and in a previous study of rural PCPs [34].
The study strengths include recruitment of PCPs who practice in both urban and rural settings and a wide range of time in practice. Limitations include the small sample size and majority female and White study sample. Despite the small sample size, we did achieve thematic saturation. Future research can survey a larger, more diverse sample of PCPs about their needs and thoughts about TS/SCPs. Pilot testing of e-consults can also be done to test their potential impact on improving survivor outcomes.
PCPs face many challenges in caring for cancer survivors. Our findings align with the National Standards for Cancer Survivorship Care, which emphasize the development of health system polices, processes, and data/evaluation that together result in coordinated, high-quality care for cancer survivors [9]. Multilevel interventions may be useful in increasing PCP knowledge as well as EHR changes to improve health system processes. Further efforts to develop interventions that integrate these methods and address limitations of current approaches to survivorship care are needed to improve outcomes in this high-priority population. In particular, changes to the TS/SCPs may be needed to maximize its utility for PCPs and to foster its application in clinical practice. The NCI recently recognized the relative lack of grants funded for PCPs and cancer survivors and the need for more research in this area [35] so there are many opportunities to bridge research gaps.
Funding
This publication was supported by the Cancer Consortium Survivorship Grant (P30 CA015704) and the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1 TR002319. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Ethics approval All procedures were reviewed and approved by the Fred Hutchinson Cancer Center Institutional Review Board and determined to be exempt.
Competing interests The authors declare no competing interests.
Data availability
No datasets were generated or analysed during the current study.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
No datasets were generated or analysed during the current study.