Survivorship care plans were viewed as useful for coordinating care and making clinical decisions. However primary care physicians desired shorter, clinician-oriented plans that were accessible via EHR and located in a standardized manner.
Abstract
Purpose:
Survivorship care plans for cancer survivors may facilitate provider-to-provider communication. Primary care provider (PCP) perspectives on care plan provision and use are limited, especially when care plans are generated by an electronic health record (EHR) system. We sought to examine PCPs' perspectives regarding EHR-generated care plans.
Methods:
PCPs (N = 160) who were members of the Wisconsin Research and Education Network listserv received a sample 10-page plan (WREN cohort). PCPs (n = 81) who had or were currently seeing survivors enrolled onto one of our survivorship clinical trials received a copy of the survivor's personalized care plan (University of Wisconsin [UW] cohort). Both cohorts received a survey after reviewing the plan. All plans were generated within an EHR.
Results:
Forty-six and 26 PCPs participated in the WREN and UW cohorts, respectively. PCPs regarded EHR-generated plans as useful in coordinating care (88%), understanding treatments (94%), understanding treatment adverse effects (89%), and supporting clinical decisions (82%). Few felt using EHR-generated plans would disrupt clinic workflow (14%) or take too much time (11%). Most (89%) preferred receiving the plan via EHR. PCPs reported consistent provision (81%) and standard location in the medical record (89%) as key factors facilitating their use of survivorship care plans. Important facilitators of care plan use included a more abbreviated plan, ideally one to three pages (32%), and/or a plan specifically tailored to PCP use (57%).
Conclusion:
Plans were viewed as useful for coordinating care and making clinical decisions. However, PCPs desired shorter, clinician-oriented plans, accessible within an EHR and delivered and located in a standardized manner.
Introduction
There are more than 14 million cancer survivors in the United States. This number is projected to increase substantially over the next decade.1–3 The increasing number of long-term survivors places new demands on oncology and primary care providers (PCPs) and requires increased attention to chronic cancer-specific health needs. Suboptimal communication and coordination of care for cancer survivors remain as public health challenges that need to be addressed as efforts are made to transition survivorship care to primary care settings.4,5 PCPs express a desire for additional information with sufficient detail and guidance in order to provide sufficient care to cancer survivors.6–8 Efforts to improve the transition from oncology to primary care, as survivors move from acute cancer care to ongoing preventative care, have focused on survivorship care plans.9 The Institute of Medicine advises that each cancer survivor receive a survivorship care plan summarizing his or her cancer diagnosis, treatment, and recommendations about follow-up care. This personalized care plan is also provided to the survivor's PCP.10–12 Research has demonstrated that PCPs desire care plans that address their survivorship information needs.6 However, a recent ASCO statement notes that care plan provision is low and cites the significant time and resources required to create care plans as key factors.13 ASCO advocates using electronic health records (EHRs) to create and provide care plans,13 as EHR generation might reduce the barriers to preparation and use.13,14 The Commission on Cancer's guidelines requiring care plans may increase diffusion into clinical practice.15 However, barriers to effective use will remain. These may include the static nature of current care plans14,16 and difficulty accessing current templates within an EHR.
Previous studies have focused on care plan content, length, impact on patient management, and perceived usefulness of non–EHR-based care plans, sometimes using sample care plans.6,8,9,17–21 However, PCPs' attitudes might vary when reviewing sample plans versus personalized plans prepared for their own patients. Limited data are available with regard to personalized care plans, EHR-generated care plans, and how PCPs would like updates incorporated.17,19,22,23 Timing and content of updates are important areas of research,24 as studies suggest that PCPs18 and survivors14 desire updates to care plans. Perception is critical to use: if care plans are perceived as awkward, time consuming to review or use, or of limited utility, PCPs and survivors are unlikely to continue using them.
Our objective was to assess PCP perceptions of the length, understandability, ease of use, and accuracy of both sample and personalized EHR-generated care plans and the perceived impact of care plans on clinical workflow and behavior. We also asked about preference for the method and timing of delivery of care plans, as well as need for and frequency of updates.
Methods
Setting and Participants
We conducted this work in two settings, a practice-based research network, the Wisconsin Research and Education Network (WREN), and within the University of Wisconsin (UW) Health Hospitals and Clinics. WREN is one of the oldest primary care–based practice networks in the country, with 160 practicing clinicians in 86 practices. WREN includes both rural and urban PCPs working within 24 health care organizations and 47 communities. We surveyed PCPs within WREN regarding their perceptions of a sample care plan (WREN cohort). We surveyed PCPs who were monitoring survivors seen at the UW regarding their perceptions of a personalized care plan, developed for one of their patients with breast cancer (UW cohort).14,20,21 The UW Institutional Review Board approved all study activities.
WREN listserv members were invited via an e-mail to participate in evaluating sample care plans. The e-mail contained the sample care plan and a hyperlink to the survey. Only physicians (MD, DO) or advanced practice practitioners (nurse practitioner, physician assistant) caring for patients in full- or part-time clinical practice were to respond, with approximately 160 providers on the listserv meeting these criteria. At the UW, there were 81 PCPs eligible to participate in the study of personalized care plans; all were invited to participate. Eligibility was based on being listed as the PCP for at least one of the 105 survivors who participated in our survivorship care plan trials, either at the time of survey or at some point since care plan creation. UW-affiliated PCPs received the personalized EHR-generated care plan and a hyperlink to the survey via UW e-mail. All other PCPs received the plan and survey via US mail to preserve patient privacy. PCPs did not receive any compensation for participating. Each cohort was sent one reminder 3 weeks after first contact.
EHR-Generated Survivorship Care Plan
We used the same template for both sample and personalized plans. It can be quickly generated within our EHR.14 For our sample plan, we created a 10-page document for a fictitious breast cancer survivor, consisting of a cover letter (one page), treatment summary (two pages), follow-up recommendations and resources (five pages), and a glossary of terms (two pages). Personalized care plans (median length, eight pages; range, four to 11 pages) were prepared between 2011 and 2014 by one of the four treating oncologists responsible for the 105 survivors included in the original two trials. The format of each personalized plan followed that of the sample plan (letter, summary, follow-up and glossary). Table 1 describes the care plan content in further detail, and the Data Supplement includes the sample plan provided along with the UW Cancer Survivorship Survey for Primary Care.
Table 1.
Elements of the EHR-Generated Care Plan: UWCaSP
| Section Title | Subsection Title | Description of Content |
|---|---|---|
| Cover letter on letterhead | Introduction | Brief description of UWCaSP, reason for providing; discussion of other documents survivor might need and information for obtaining |
| Treatment summary | General information | Name, date of birth, medical record number |
| Care team | Treating providers, phone numbers, including primary care provider | |
| Background information | Genetic testing (recommendation, results if done), menstrual status at cancer diagnosis, comorbidities | |
| Oncologic history | Cancer presentation, screening and diagnostic mammogram, ultrasound, MRI, with date and findings (if applicable) | |
| Biopsy date, receptors, histology, lymphovascular invasion, Ki-67, margins, grade | ||
| Treatment plan and information | Surgery: surgeon, type/date, pathologic findings including TNM stage | |
| Chemotherapy: medical oncologist; regimen name, drugs, dates; complications/toxicities experienced | ||
| Radiation: radiation oncologist, total dose and type, dates | ||
| Endocrine therapy: medical oncologist; drugs used and date started; date if discontinued, with reason | ||
| Reconstruction (if applicable): surgeon, type and date | ||
| Trials (if applicable): trial participation and name, brief description | ||
| Ancillary studies | Staging studies (eg, labs, CT, bone scan), left ventricular ejection fraction study if done, and any repeated assessments | |
| Current treatment | Any treatment survivor still receiving, with anticipated end date | |
| Follow-up or survivorship care plan | Symptoms to watch for | List of symptoms to contact clinic about: recurrence and second tumors |
| What happens after treatment for breast cancer? | Recommended screening and schedule for breast cancer follow-up; last mammogram and MRI, along with future recommendations; hyperlinks to national guidelines | |
| Lifestyle changes to consider | Diet and exercise recommendations; other preventative health care: vaccinations, colonoscopies, pelvic and Pap, bone densitometry testing, vitamin D levels, including dates last done; smoking cessation resources, including hyperlinks | |
| Possible side effects of treatments | Recovery from toxicities, late and chronic adverse effects of treatments survivor received (information was not provided for treatments not given: eg, if no chemotherapy given, chemotherapy adverse effects not included), lifetime dosage of anthracycline | |
| Life after cancer treatment | Referrals information for patient navigator, support groups, and cancer psychology and social work; includes hyperlinks to resources | |
| Concerns and resources | Hyperlinks to resources about marital/partner relationship, sexual functioning, work, and parenting, and potential future need for psychosocial support; insurance, employment, financial concerns | |
| Glossary | Understanding words and concepts used by your cancer team | List of definitions and abbreviations commonly encountered, hyperlinks to general information resources |
Abbreviations: CT, computed tomography; EHR, electronic health record; MRI, magnetic resonance imaging; UWCaSP, University of Wisconsin Cancer Summary and Plan.
Survey Questions
Oncology specialists, PCPs, and health systems engineers developed an 18-item survey (the UW Cancer Survivorship Survey for Primary Care) to gather information on (1) PCP demographics; (2) PCP views on optimal timing of care plan delivery, need for plan updates, and preferred method of plan delivery; and (3) PCP assessment of plan accuracy, content and length, and impact on clinical workflow and behavior. The survey included 15 multiple-choice questions with three open-ended questions (Data Supplement). Although we asked about EHR use, we did not ask participants to provide details about their access to the UW EHR system. However, all UW providers would have access, and other providers likely had access via the UW electronic health information exchange.
Statistical Analysis
Response rates were summarized using an estimated denominator (N = 160) for eligible practitioners from the WREN cohort and actual denominator of PCPs contacted for the UW cohort. Survey answers were summarized using counts and percentages out of those completing the survey.
Results
PCP Characteristics
Data were collected June to August 2014 for both cohorts. Forty-six of the estimated 160 eligible WREN PCPs completed the survey (29% response rate). Most were physicians (87%) specializing in family medicine (98%). More women than men responded (62%); most had been in practice for more than 10 years (69%). Of the eligible PCPs from the UW cohort, 26 completed the survey (32% response rate). Most were physicians (88%) specializing in family medicine (58%). More women than men responded (69%); most had been in practice for more than 10 years (58%). All participants in both cohorts reported that their practice used an EHR.
Usefulness
Whether viewing a sample or personalized plan, most PCPs agreed that EHR-generated care plans were accurate, clearly written, understandable to them, and easy to use (Table 2). Few felt that using the plan would disrupt clinic workflow or take too much time. The majority agreed plans would improve understanding of treatments given and treatment adverse effects, improve coordination of care, and facilitate better decision-making and clinical care.
Table 2.
Provider Perceptions of and Preference for EHR-Generated Breast Cancer Survivorship Care Plans (sample or personalized)
| Perception | WREN Cohort: Sample Plan (n = 46)* |
UW Cohort: Personalized Plans (n = 26)* |
||||
|---|---|---|---|---|---|---|
| Strongly Agree or Agree (%) | Neutral (%) | Strongly Disagree or Disagree (%) | Strongly Agree or Agree (%) | Neutral (%) | Strongly Disagree or Disagree (%) | |
| PCP perception of plan | ||||||
| Care plan information regarded as accurate | 93 | 5 | 2 | 96 | 4 | 0 |
| Care plan clearly written | 78 | 13 | 9 | 96 | 4 | 0 |
| Care plan content understandable by PCP | 89 | 7 | 4 | 100 | 0 | 0 |
| Care plan easy to use | 69 | 18 | 13 | 92 | 8 | 0 |
| Care plan disrupts clinic workflow | 13 | 18 | 69 | 17 | 12 | 71 |
| Care plan too time consuming | 13 | 24 | 62 | 8 | 16 | 76 |
| Helpfulness of plan for patient care | ||||||
| Care plan increases understanding of treatment | 93 | 7 | 0 | 96 | 4 | 0 |
| Care plan increases understanding of side effects | 84 | 13 | 2 | 96 | 4 | 0 |
| Care plan improves coordination of care | 89 | 11 | 0 | 85 | 8 | 8 |
| Care plans helps make decisions | 80 | 20 | 0 | 84 | 12 | 4 |
| Care plans helps provide better care | 91 | 9 | 0 | 77 | 19 | 4 |
| Preferred methods of providing care plan | ||||||
| Paper care plan | 44 | 27 | 29 | 12 | 29 | 58 |
| Care plan via EHR | 87 | 7 | 7 | 92 | 8 | 0 |
| Patient provides care plan (eg, paper or mobile app) | 27 | 16 | 58 | 12 | 38 | 50 |
| Access plan via external Web site | 9 | 20 | 71 | 8 | 0 | 92 |
Abbreviations: EHR, electronic health record; PCP, primary care provider; UW, University of Wisconsin; WREN, Wisconsin Research and Education Network.
Denominators for individual questions vary, based on whether participants answered.
Provision and Updates
PCPs favored receiving the plan via EHR, although a few expressed concern about the intraoperability of EHR systems and desired delivery via both paper and EHR (Table 2). Most strongly preferred to avoid accessing external Web sites or mobile apps to access plans. As one provider stated, “If I have to look in one more location to find important clinical data about my patients, I will scream!”
Views were mixed on when care plans should be provided (Table 3). Combining both cohorts (n = 72), half (50%) wanted care plans provided immediately after a survivor completed primary treatment. In regard to updates, a majority (57%) felt updates should be based on information changes, with changes to screening guidelines (53%), or changes to follow-up recommendations (56%) being most commonly selected.
Table 3.
PCP Preference for Timing and Updates of Care Plans and Perceived Facilitators and Barriers to Use of Care Plans
| Parameter | WREN Cohort: Sample Plan (n = 46)* (%) | UW Cohort: Personalized Plans (n = 26)* (%) |
|---|---|---|
| Need and timing for possible care plans updates | ||
| Never | 0 | 0 |
| After every oncology visit | 28 | 4 |
| Yearly | 24 | 27 |
| Every few years | 2 | 0 |
| Based on information changes, not time | 54 | 62 |
| Other | 9 | 8 |
| Best time to deliver care plan to PCP† | ||
| Immediately after cancer diagnosis | 9 | 0 |
| Immediately after primary treatment | 43 | 62 |
| 1-2 years after diagnosis | 0 | 4 |
| When patient discharged from oncology follow-up | 33 | 35 |
| Other | 15 | 4 |
| Endorsed facilitators of care plan use by PCP† | ||
| Increased awareness of existence | 87 | 81 |
| Routinely provided care plans for all | 85 | 73 |
| Standardized location | 89 | 88 |
| Care plan specific to primary care | 61 | 50 |
| Shorter care plan, with ideal length fill-in | 33 | 31 |
| Other (with fill-in) | 20 | 8 |
| Endorsed barriers to care plan use by PCP† | ||
| Content too generic | 26 | 23 |
| Plan difficult to understand | 28 | 12 |
| Plan too long | 67 | 54 |
| Not sure how to find it | 83 | 62 |
| Not located in patient chart | 74 | 65 |
| Don't know to look for it | 76 | 65 |
| Don't know that it exists | 85 | 81 |
| Plan disrupts clinical workflow | 26 | 23 |
| Follow-up care continues with oncologist | 24 | 19 |
Abbreviations: PCP, primary care provider; WREN, Wisconsin Research and Education Network; UW, University of Wisconsin.
Denominators for individual questions vary based on whether participants answered.
Participant instructed to select all that applied.
Barriers and Facilitators
PCPs in both cohorts reported the main barriers to plan use as not knowing a plan existed (83%), not knowing how to find the plan (75%), not being able to locate the plan in the patient chart (71%), and not knowing to look for the plan (72%). PCPs identified potential facilitators to use as increased awareness of plan existence (85%), standardized location within medical records (89%), and consistent provision of care plans for all patients (81%). Notably, many PCPs (57%) indicated that providing a care plan specific to primary care rather than a document designed for both clinicians and survivors would also facilitate use. As one stated, “plans [should be] targeted for the primary care provider. We need to know… more clearly what … to do for specific follow-up testing that the oncologist or surgeon won't be doing … putting everything I need to know on one page…. would be best.”
As this comment indicates, a number of PCPs (32%) also felt that shorter plans would facilitate use. Ideal length was reported as one to three pages.
Personalized Plan Impact
The UW cohort was asked whether they knew the plan existed before our survey, and whether the care plan had or would change care. The majority reported being unaware that their patient had a care plan (n = 19; 73%); four (15%) indicated they knew the plan existed but had not accessed it. Only three (12%) indicated previously accessing the plan. More than half of PCPs (n = 14; 54%) indicated that the care plan did not or would not result in a change of care, citing reasons such as, “Patient continues to follow with heme/onc.” Among clinicians who indicated that the care plan had or would change care, cited examples included “more frequent bone density scans given anastrozole therapy” and “make sure that patient follows up with recommended exams after cancer treatment.”
Discussion
We found that PCPs endorsed the use of care plans for understanding breast cancer diagnosis, treatment, and recommended follow-up. Our data suggest that PCPs may prefer a shorter plan (one to three pages), oriented to clinicians, with a uniform location in the medical record. Most PCPs (89%) preferred to receive care plans via the EHR; all PCPs reported use of an EHR within their practice, not surprising given that Wisconsin has a 71% EHR adoption rate.25
Ezendam et al17 similarly reported that most PCPs (84%) prefer receiving care plans via the EHR. Mayer et al6 found both paper and electronic versions were acceptable, while Salz et al20 suggested that printed documents are preferred (however, receipt via the EHR did not appear as an answer option). EHRs may facilitate other aspects of survivorship care; qualitative interviews have found oncologists and PCPs rely on EHRs to communicate and track survivor care.26 Our results suggest that efforts should focus on integrating care plan information within and across EHRs rather than designing external Web sites or mobile apps. Dissatisfaction with searching for patient data was notable and will likely impede PCP use of plans external to the EHR. Care plan information outdates rapidly,14 and all of our PCPs wanted some schedule of updates, a concern previously raised by Kantsiper et al.18 Our survivors not infrequently either changed PCPs (13%) or acquired a PCP (13%) between 2011 and 2104. Currently, no mechanism exists for ensuring that a care plan reaches a PCP not caring for the survivor at plan creation.
Barriers to PCP use of care plans suggested by this study include (1) individual-level factors (eg, clinician being unaware that care plans exist), (2) organizational-level factors (eg, lack of policies to ensure complete and consistent provision of care plans), (3) technology factors (eg, difficulty locating plan, with EHR not being able to update static care plans or care plans existing external to the EHR), and (4) work task factors (eg, care plans not being designed to support PCP survivor-related work activities). Some of these issues may be resolved by dynamically integrating care plans within EHRs. Dynamic and EHR-integrated plans could automatically generate updates (eg, if guidelines for genetic testing changed) and ensure care plans are available to new clinicians when survivors change PCPs.
Data are limited on PCPs evaluating personalized care plans prepared for survivors that they follow clinically.19,22,23 Moreover, data on PCP views regarding EHR-generated care plans are lacking. Here, we report on PCP views of EHR-generated sample and personalized care plans with regard to clinical workflow and behavior, as well as usefulness in coordinating care and making clinical decisions. Most of the UW cohort (88%) reported being unaware of or not accessing the personalized care plan, similar to one previous study.17 This may be due to inconsistent policy on how and when to notify the PCPs about the care plan, an issue being addressed at the UW as a result of this survey. Conversely, Shalom et al22 reported a high rate of PCP awareness of plan existence. Their results may be explained by (1) re-provision of care plans before PCPs were contacted to participate in the study, (2) selection bias if PCPs who used the care plan were more likely to participate in the interviews, and/or (3) greater penetration of care plans in an area served by a specialized survivorship clinic. PCPs may benefit from education on the existence and use of care plans to achieve their desired impact.7,24 Further efforts should also be devoted to ensuring that EHRs meaningfully integrate care plans into practice so that they can be routinely found and used. This will be challenging if care plans continue to be housed external to EHRs or be scanned into EHRs as “outside documents.” Such scanned documents are often hard to find or view, and are most certainly difficult to update.
Our study has several key strengths. First, we have nearly twice the PCP participants of the two prior US studies on personalized care plans.20,22 Second, ours is the only study (to our knowledge) to evaluate the desirability of EHR-generated care plans. Third, we assessed both rural and urban PCPs working within a variety of small and large health care systems. Fourth, our study highlights the need to use EHRs more effectively by understanding the information needs of PCPs participating in survivorship care and how EHRs affect this care. Our findings suggest that a standard location for care plans, visible to the entire clinical team, is important to ensure that PCPs receive, recognize, and can readily reference care plans at later time points. However, our study also has some limitations. Our response rate was less than 50%, likely due to the fact that we asked busy clinicians to review a several-page document and answer a survey without compensation. Another limitation is that our PCPs came from a single geographic area, the American Midwest. However, other studies have had findings consistent with ours, suggesting that these results are generalizable.17,23 Finally, our study was limited to care plans designed for breast cancer survivors, and might not be generalizable to non–breast cancer survivors.
In conclusion, this study demonstrates that PCPs find EHR-generated care plans useful in coordinating and providing care to cancer survivors. These results support current recommendations that care plans be provided to each survivor's PCP as part of an effort to improve specialist–primary care communication. However, our results also suggest the need for continued modifications to improve care plan adoption and use by PCPs. Further research is warranted to create and assess the impact of clinician-oriented care plans. Additionally, the oncology community needs to address the challenge of consistently providing, delivering, and updating care plans, as well as developing processes for better informing PCPs regarding the existence and value of care plans, and the appropriate follow-up care for cancer survivors.
Supplementary Material
Acknowledgment
Supported by the Clinical and Translational Science Award program, through the NIH National Center for Advancing Translational Science Grants No. UL1TR000427 and KL2TR000428 (A.J.T., E.A.J.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Funding for this project was also provided by the University of Wisconsin School of Medicine and Public Health from the Wisconsin Partnership Program and the Shapiro Research Program. We thank our participating providers, the UW Breast Cancer Disease-Oriented Work Group (Jamie Zeal), and members of the Cancer Survivorship and Employment research group (Wenjun Sun, Abigail Terhaar).
Authors' Disclosures of Potential Conflicts of Interest
Disclosures provided by the authors are available with this article at jop.ascopubs.org.
Author Contributions
Conception and design: SarahMaria Donohue, Mary E. Sesto, David L. Hahn, Kevin A. Buhr, Elizabeth A. Jacobs, James M. Sosman, Molly J. Andreason, Amye J. Tevaarwerk
Administrative support: Molly J. Andreason
Provision of study materials or patients: David L. Hahn, Elizabeth A. Jacobs, James M. Sosman
Collection and assembly of data: SarahMaria Donohue, David L. Hahn, Amye J. Tevaarwerk
Data analysis and interpretation: SarahMaria Donohue, Mary E. Sesto, David L. Hahn, Kevin A. Buhr, Elizabeth A. Jacobs, Douglas A. Wiegmann, Amye J. Tevaarwerk
Manuscript writing: All authors
Final approval of manuscript: All authors
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
Evaluating Primary Care Providers' Views on Survivorship Care Plans Generated by an Electronic Health Record System
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or jop.ascopubs.org/site/misc/ifc.xhtml.
SarahMaria Donohue
No relationship to disclose
Mary E. Sesto
No relationship to disclose
David L. Hahn
Research Funding: Pfizer, unrestricted educational grant
Kevin A. Buhr
Research Funding: Amgen, Pfizer, GlaxoSmithKline, Xoma, AstraZeneca, Catalyst Pharmaceutical Partners
Travel, Accommodations, Expenses: Pfizer, GlaxoSmithKline, AstraZeneca
Elizabeth A. Jacobs
No relationship to disclose
James M. Sosman
No relationship to disclose
Molly J. Andreason
No relationship to disclose
Douglas A. Wiegmann
No relationship to disclose
Amye J. Tevaarwerk
No relationship to disclose
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