Survivorship Care Plans Content Research Articles

Determining the core content of a digital survivorship care plan for melanoma survivors: a multistakeholder Delphi consensus study.

Increasing melanoma incidence and improved survival emphasize the importance of survivorship care plans (SCPs). We conducted a multistakeholder Delphi study to achieve consensus on core melanoma SCP content. Of the 44 potential elements, 24 (55%) reached consensus for inclusion. Notably, melanoma survivors and healthcare providers differed in their preferences, with survivors prioritizing coordination improvements and healthcare providers emphasizing psychosocial care. Exploring and overcoming these differences in opinions and including the consented elements as a basis in the design of the SCP can facilitate its implementation in practice and lead to survivorship care tailored to stakeholders’ needs.

Colorectal cancer survivorship care plans: Variations in documentation and posttreatment surveillance recommendations.

Survivorship care plans (SCP) should outline pertinent information about cancer treatment and follow-up. We descriptively analyzed the content of 74 colorectal cancer SCPs completed as part of a randomized, controlled trial of SCPs at an academic and community cancer center. Surveillance recommendations were compared with American Cancer Society, American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. SCP information provided in >80% of the plans included participant age, cancer diagnosis, details, and side-effects of treatment (surgery, chemotherapy, radiation) and health promotion recommendations. SCP content documented less frequently included predisposing conditions, genetic counseling/testing information and staging. Posttreatment surveillance recommendations were documented in >90% SCPs. For stage 2-3 cancer, rates of guideline concordant recommendations were 100% for colonoscopy surveillance (Year 1 only), 87% for imaging surveillance, 65% for carcinoembryonic antigen surveillance, and 33% for follow-up visits. Excluding colonoscopy, >15 unique recommendations were listed for each modality across stages and sites, with more variation at the academic site. SCPs consistently recorded information about cancer diagnosis and treatment but omitted critical information about cancer-specific details denoting risk. Surveillance recommendations varied considerably between cancer centers. Future work to improve the consistency of surveillance recommendations documented in SCPs may be needed.

Re-engineering Survivorship Care Plans to Support Primary Care Needs and Workflow: Results From an Engineering, Primary Care and Oncology Collaborative for Survivorship Health (EPOCH).

Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care. Primary care clinicians have been acknowledged as important recipients of survivorship care plans (SCPs); however, current SCP templates have not been evaluated for usefulness in the primary care context. We surveyed and interviewed primary care clinicians from a rural research network regarding SCP content, format and layout (phase 1), and potential use and clinical workflows around SCPs (phase 2). Based on these data, an existing SCP template was iteratively redesigned to better support survivorship care in the primary care setting. A total of 13 clinicians (9 MDs, 4 APPs) participated. Interviewees advocated for maintaining a single SCP document shared by survivors and clinicians. Changes to the SCP template included prioritizing follow-up over summary of treatment and removing or down-playing screening recommendations not impacted by cancer or cancer treatment. The re-engineered SCP was regarded as highly relevant for survivors, but clinicians noted the significant effort to "disassemble" SCPs in order to enter the information into on the receiving health record. Primary care clinicians value the information in SCPs but had important recommendations regarding content, layout, and format. Additionally, a significant effort appears to be required by recipients in order to extract SCP information for future use.

Variations in recommended surveillance in colorectal cancer survivorship care plans.

13 Background: Survivorship care plans (SCPs) outline pertinent information about a cancer survivor’s treatment and follow-up care. We describe the content of colorectal cancer (CRC) SCPs, completed as part of a randomized controlled trial of SCPs, and evaluate whether follow-up recommendations are guideline concordant. Methods: We analyzed 74 CRC SCPs from an academic and community cancer center. Frequency distributions and descriptive statistics were calculated for the entire cohort and separately by recruiting site. Follow-up recommendations were compared to American Cancer Society (ACS), American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) guidelines (Table). Results: Content routinely provided in SCPs (>80%) included patient demographics, cancer diagnosis, treatment details (surgery, chemotherapy, radiation therapy) as well as treatment-related side effects. SCP content specified less frequently included cancer stage, cancer risk (predisposing conditions), and recommendations for genetic counseling/testing and health promotion. Nearly all SCPs from the community site provided uniform, guideline-concordant follow-up. At the academic site, on average, more than 15 follow-up recommendations were listed for each surveillance modality, except colonoscopy. Among the SCPs that specified the frequency of follow-up care, the rate of guideline-concordant recommendations was 15/42 (36%) for follow-up visits, 29/43 (67%) for imaging, 12/45 (27%) for laboratory and 39/39 (100%) for colonoscopy. Conclusions: SCPs consistently provided information about CRC diagnosis and treatment, but often omitted information about cancer risk, staging and prognosis. There was considerable variation between cancer centers in the follow-up recommendations suggested for CRC survivors. Future work to improve the consistency of SCP follow-up recommendations with guidelines may be needed. Clinical trial information: NCT03035773 . [Table: see text]

Results of Engineering, Primary Care, Oncology Collaborative Regarding a Survey of Primary Care on a Re-Engineered Survivorship Care Plan.

Survivorship care plans (SCPs) may facilitate cancer survivorship care shared between oncologists and primary care, particularly for patients more likely to receive care across healthcare systems such as rural patients. However, limited research has addressed primary care clinicians' information or workflow needs with regard to SCPs. This study's objective was to assess primary care clinicians' perceived usefulness with a re-engineered SCP previously developed by applying engineering approaches and informed by primary care preferences. An emailed survey of primary care clinicians assessed perceived usefulness with the re-engineered SCP. Clinicians were recruited across the USA from primary care practice-based research networks (PBRNs) with high concentrations of rural practices. Over 90% of respondents (n = 111) agreed that (1) the re-engineered SCP was useful (n = 95) and (2) they would want to receive a similar SCP (n = 93). The majority demonstrated high agreement regarding the SCP's relevance, understandability, content, and ability to help provide better survivorship care. Perceived usefulness was consistent between rural and non-rural clinicians. Suggested improvements involved decreased length, addition of a bulleted list, and electronic health record integration. Results indicate that the majority of primary care clinicians perceive the re-engineered SCP as useful. However, primary care clinicians indicated continued barriers despite end-user specific alterations. Future research should investigate additional strategies to support primary care survivorship-related workload, provide essential SCP content, and improve survivorship care delivery.

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

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. 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. A total of 6 nurses and 8 oncologists created 21 SCPs. On average, nurses assisted with 3.5 SCPs and spent 209min (range 100-600min) on completing their sections of each SCP, whereas oncologists assisted with 2.6 SCPs and spent 47.4min (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%). 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.

Communicating Critical Information to Cancer Survivors: an Assessment of Survivorship Care Plans in Use in Diverse Healthcare Settings.

Survivorship care plans (SCPs) serve to communicate critical information needed for cancer survivors' long-term follow-up care. The extent to which SCPs are tailored to meet the specific needs of underserved patient populations is understudied. To fill this gap, this study aimed to assess the content and communication appropriateness of SCPs collected from diverse healthcare settings. We analyzed collected SCPs (n = 16) for concordance with Institute of Medicine (IOM) recommendations for SCP content and for communication appropriateness using the Suitability Assessment of Materials (SAM) instrument. All plans failed to incorporate all IOM criteria, with the majority of plans (n = 11) incorporating less than 60% of recommended content. The average reading grade level of all the plans was 14, and only one plan received a superior rating for cultural appropriateness. There is significant variation in the format and content of SCPs used in diverse hospital settings and most plans are not written at an appropriate reading grade level nor tailored for underserved and/or minority patient populations. Co-designing SCPs with diverse patient populations is crucial to ensure that these documents are meeting the needs and preferences of all cancer survivors.

Prostate cancer survivorship care plans: What we are failing to tell men after treatment?

311 Background: Survivorship care plans (SCPs) present essential information about cancer treatment and follow-up recommendations for cancer survivors. We describe the completeness of prostate cancer SCPs and evaluate guideline concordance of follow-up recommendations. Methods: We analyzed 125 prostate cancer SCPs from an academic and community cancer center, abstracting demographics, cancer/treatment details and follow-up recommendations. Follow-up recommendations were compared to national guidelines. Results: Content provided in >90% of SCPs included cancer TNM stage; PSA at diagnosis; radiation treatment details (98% of men received radiation); and PSA monitoring recommendations. Potential treatment-specific side effects were listed for 69% of men who had surgery, 78% for androgen deprivation therapy (ADT) and 97% for radiation. The presence of post-treatment symptoms were noted in 67% of plans – several ADT-related side effects (e.g., bone thinning, cognitive changes, muscle atrophy) were noted for 0/21 men who completed all ADT. Guidelines recommend an annual digital rectal exam (DRE) with no physical exam otherwise specified. No SCPs specified DRE, but all 68 SCPs at the community site recommended at least annual follow-up visits with urology, radiation oncology, and primary care. Only 5/57 SCPs at the academic site specified follow-up visits (radiation oncology every 6 months). Guidelines recommend PSA testing every 6-12 months (optional 3 months if high risk) for 5 years, then annually; while duration was not specified in any SCPs, if applied to the first 5 years, 91% of SCP recommendations were guideline concordant, 7% suggested oversurveillance, and 2% were incomplete. In men who received ADT, guidelines recommend assessing bone density (by imaging or FRAX score), and goal testosterone level. Of 80 men who completed or had ongoing ADT, 2% were recommended for bone density imaging (0 had FRAX scores) and 19% for testosterone levels. Conclusions: SCP content is more complete for demographic and treatment summary information with gaps in addressing treatment effects and follow-up recommendations beyond PSA testing. These findings highlight the need to improve the quality of information in SCPs. Clinical trial information: NCT03035773.

Breast cancer survivorship care plans: what are they covering and how well do they align with national guidelines?

Survivorship care plans (SCPs) provide key information about cancer treatment history and follow-up recommendations. We describe the completeness of breast cancer SCPs and evaluate guideline concordance of follow-up recommendations. We analyzed 149 breast cancer SCPs from two sites, abstracting demographics, cancer/treatment details, surveillance plans, and health promotion advice. SCP recommendations and provided information were compared to American Cancer Society/American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. SCP information provided in > 90% of the plans included patient age; relevant providers; cancer stage; treatment details; and physical exam, mammogram, and health promotion recommendations. SCP components completed less frequently included post-treatment symptoms/side effects (67%). All SCPs at the community site were uniform but had the potential for oversurveillance if visits occurred every 3months in years 1-2 or every 6months in years 3-5 with multiple cancer providers. The academic site recommended three predominant patterns of follow-up: (1) primary care provider every 6-12months; (2) cancer team every 3-6months (year 1), every 6-12months (years 4-5); and (3) alternating oncology providers every 3-6months (years 1-2) then every 6months. Compared to guidelines, these patterns recommend under- and oversurveillance at various times. Mammography recommendations showed guideline concordance (annual) for 84%, oversurveillance for 10%, and were incomplete for 6%. SCPs of only 12/79 (15%) women on aromatase inhibitors recommended guideline-concordant bone density testing. SCP content is more complete for demographic and treatment summary information but has follow-up recommendation gaps. Efforts to improve follow-up recommendations are needed.

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n = 29) and clinicians (n = 18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating user-centered documents.

Assessing Key Stakeholders' Knowledge, Needs, and Preferences for Head and Neck Cancer Survivorship Care Plans.

Cancer survivorship care plans (SCPs) are endorsed to support quality care for cancer survivors, but uptake is slow. We assessed knowledge, needs, and preferences for SCP content and delivery from a wide variety of stakeholders. We focused SCP content for head and neck cancer as it is a disease prone to long-term side effects requiring management from multiple providers. We conducted telephone-based, qualitative interviews. We purposively sampled head and neck cancer survivors (n = 4), primary care physicians in the community (n = 5), and providers affiliated with a large academic medical center (n = 5) who treat head and neck cancer, cancer specialists (n = 6), and nurse practitioners/supportive care staff (n = 5). Interviews were recorded, transcribed, and analyzed using direct content analysis. Few participants reported personal experience with SCPs, but most supported the concept. Several key themes emerged: (1) perceived ambiguity regarding roles and responsibilities for SCPs, (2) a need to tailor the content and language based on the intended recipient, (3) documentation process should be as automated and streamlined as possible, (4) concerns about using the SCP to coordinate with outside providers, and (5) that SCPs would have added value as a "living document." We also report SCP-related issues that are unique to serving patients diagnosed with head and neck cancer. Effort is needed to tailor SCPs for different recipients and optimize their potential for successful implementation, impact on care outcomes, and sustainability. Many cancer survivors may not receive a SCP as part of routine care. Survivors could engage their health care team by requesting a SCP.

Impact of cancer survivorship care plans (SCPs) on health outcomes and health care delivery: A systematic review.

2 Background: In 2006, the Institute of Medicine recommended that patients at or near completion of active treatment be provided with a SCP (treatment summary, relevant health information, and follow-up care plan) to improve care delivery and outcomes in the post-treatment period. We systematically reviewed published research to determine if SCPs have a positive impact on health outcomes and healthcare delivery. Methods: Randomized and nonrandomized studies evaluating patient-reported outcomes, healthcare utilization, and disease outcomes after delivery of SCPs were identified by searching MEDLINE, Embase, PsycINFO, and Cochrane Library. Data were extracted by independent raters and summarized based on qualitative synthesis. Results: Eleven nonrandomized and 13 randomized studies met inclusion criteria. Variability was evident across studies in cancer diagnoses, timing of SCP delivery in relation to treatment completion, SCP delivery method and recipients, SCP content, SCP-related counseling, and outcomes assessed. Findings from nonrandomized studies yielded descriptive information only on outcomes such as satisfaction with care and reactions to SCPs. Among randomized studies, findings were near uniformly negative for the impact of SCPs on the most commonly assessed outcomes (physical, functional, and psychological well-being); findings were positive in single studies for other outcomes including amount of information received, satisfaction with care, and physician implementation of recommended survivorship care. Conclusions: Existing research provides minimal evidence that SCPs improve quality of life in cancer survivors. Possible explanations include heterogeneity in study designs and the low likelihood that SCP delivery alone would influence distal health outcomes. Findings are very limited but more positive for proximal outcomes (e.g., information received) and for care delivery, especially when SCPs are accompanied by counseling to prepare survivors for future clinical encounters. In light of current findings, future research should focus to a greater extent on evaluating ways to ensure SCP recommendations are subsequently implemented as part of ongoing care.

The Impact of a Primary Care Education Program Regarding Cancer Survivorship Care Plans: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Survivorship care plans (SCPs) have been recommended as tools to improve care coordination and outcomes for cancer survivors. SCPs are increasingly being provided to survivors and their primary care providers. However, most primary care providers remain unaware of SCPs, limiting their potential benefit. Best practices for educating primary care providers regarding SCP existence and content are needed. We developed an education program to inform primary care providers of the existence, content, and potential uses for SCPs. The education program consisted of a 15-min presentation highlighting SCP basics presented at mandatory primary care faculty meetings. An anonymous survey was electronically administered via email (n=287 addresses) to evaluate experience with and basic knowledge of SCPs pre- and post-education. A total of 101 primary care advanced practice providers (APPs) and physicians (35% response rate) completed the baseline survey with only 23% reporting prior receipt of a SCP. Only 9% could identify the SCP location within the electronic health record (EHR). Following the education program, primary care physicians and APPs demonstrated a significant improvement in SCP knowledge, including improvement in their ability to locate one within the EHR (9 vs 59%, p<0.0001). A brief educational program containing information about SCP existence, content, and location in the EHR increased primary care physician and APP knowledge in these areas, which are prerequisites for using SCP in clinical practice.

A primary care education program regarding cancer survivorship care plans at the University of Wisconsin (UW).

69 Background: Survivorship care plans (SCPs) have been recommended as a tool to improve cancer patients’ (pts) care coordination and outcomes. The UW routinely provides SCPs. However, a prior project indicated most PCPs were unaware of these SCPs, limiting SCPs potential benefits. Best methods for educating PCPs regarding SCP existence and content are needed. We developed an educational program to inform PCPs of SCP existence, content, and potential uses. Methods: The program - a 10 minute presentation with slides - was developed to make PCPs aware of the basics of SCPs as listed above. The program was presented at UW general internal medicine (GIM) and family medicine (FM) scheduled meetings and emailed to UW PCPs afterwards. Two anonymous online surveys were administered to evaluate PCP previous use and basic knowledge of SCPs. Baseline surveys were sent 1 week prior to the first presentation and a follow-up survey was sent 4 weeks later via UW GIM and FM listservs (n = 286 addresses). Results: 101 PCPs completed the baseline survey: 27% reported not knowing what SCPs were; 50% knew but reported never receiving one; 23% reported having received one. 66 PCPs that attended or reviewed the program completed the follow-up survey. 40 “matched” PCPs completed both surveys. See Table 1 for results. Conclusions: A brief educational program containing information about existence of, content, and location in electronic medical record (EMR) increased PCP knowledge in these areas, which are prerequisites for PCP use. Ongoing work will assess whether PCP review of SCPs at point of care influences clinical decision making. [Table: see text]

Understanding primary care provider (PCP) experiences with survivorship care plans (SCPs) and informational needs when caring for cancer survivors.

98 Background: Survivorship advocate organizations, including the Commission on Cancer and the American College of Surgeons, have proposed SCPs as one solution to help meet the post-treatment needs of cancer survivors and improve coordination of care between provider types. Though there have been a few recent studies investigating PCP evaluation of SCPs and their survivorship informational needs, widespread incorporation of PCP and other provider types’ perspectives on survivorship care planning and SCPs is lacking. Methods: Levine Cancer Institute emailed 598 surveys to PCPs and obstetrics and gynecology (OBGYN) providers affiliated with Carolinas HealthCare System. 159 surveys were returned (26.6% response rate) between February and August 2016. Results: Nearly half of providers reported having received a SCP (42.4%, 67 of 158) and the vast majority of those who did (95.5%, 64 of 67) found them useful. Providers stated that the most useful parts of the SCP for their practice needs were the surveillance recommendations (50.0%) and the treatment summary (45.3%). Respondents indicated the most challenging part of caring for cancer survivors is knowing the recommended surveillance tests/schedule/who is the responsible provider to order tests (53.8%) and knowing what late-effects of treatment to look out for (20.2%). The majority (77.7%) of providers reported using Up-to-Date to guide them in their care of patients who have completed cancer treatment. Providers indicated that guidelines for identifying and managing late (44.9%) and lingering (32.7%) effects of treatment would be the most helpful resources in caring for cancer survivors. Finally, providers reported interest in attending future CME conferences on surveillance (73.4%), managing late (57.8%) and lingering (54.1%) effects, and integrative and alternative therapies (24.8%). Conclusions: Preliminary findings from this internal survey suggest PCPs and OBGYNs may find SCPs useful and may need additional resources to guide their care of cancer survivors. We recommend formal study of preferences for SCP content among these understudied provider groups in the coordination of survivorship care.

Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society's Study of Cancer Survivors-I.

Survivorship care plans (SCPs) provide cancer patients and health care providers with a treatment summary and outline of recommended medical follow-up. Few studies have investigated the information needs and preferred sources among long-term cancer survivors. Cancer survivors of the ten most common cancers enrolled in the longitudinal Study of Cancer Survivors-I (SCS-I) completed a survey 9years post-diagnosis (n = 3138); at time of diagnosis of the SCS-I cohort, SCPs were not considered usual care. We assessed participants' current desire and preferred sources for information across ten SCP items and evaluated factors associated with information need 9years after diagnosis. The proportion of long-term cancer survivors endorsing a need for cancer and health information 9years post-diagnosis ranged from 43% (cancer screening) to 9% (consequences of cancer on ability to work). Print media and personalized reading materials were the most preferred information sources. Younger age, higher education, race other than non-Hispanic white, later cancer stage, having breast cancer, having ≥2 comorbidities, and self-reporting poor health were associated with greater informational need (p < 0.05). Long-term cancer survivors continue to report health information needs for most SCP items and would prefer a print format; however, level of need differs by socio-demographic and cancer characteristics. Cancer survivors who did not previously receive a SCP may still benefit from receiving SCP content, and strategies for enabling dissemination to long-term survivors warrant further investigation.

Will breast cancer survivors receive the same content and assessment in survivorship care plans at non-COC sites?

e20634 Background: The Commission on Cancer (COC) standard 3.3 requires survivorship care plans (SCP) in pilot for 10% of patients completing curative intent treatment, with a tiered requirement for implementation to 100% of survivorship by 01/01/2019. In preparation for a workshop on breast cancer (BC) survivorship care, we analyzed the content and assessments in existing and planned survivorship care plans and programs. Funded by Susan G. Komen. Methods: Web survey conducted with 30 hospitals that provide BC treatment and have registered for a BC survivorship care workshop. Using guidelines / recommendations for survivorship care (ASCO, COC, NCCN, NAPBC), we developed a pre-workshop survey on current and planned content and assessments. Results analyzed by simple frequencies and Fisher's exact test. Results: Response rate: 97% (29/30 sites). All sites plan to provide survivorship care for indicated BC patients. Currently, 22% (5/22) of COC sites and 0% of non-COC sites provide BC survivorship plans. Treatment plan summaries are provided to patients by 27% (6/22) of COC sites and 0% of non-COC sites. The table indicates inclusion or plan for specific survivor care plan content and assessments. Conclusions: While all sites have or plan to have SCPs, not all sites plan to include the content and assessments indicated in ASCO and NCCN survivorship guidelines. We found significant difference between COC accredited sites and non-accredited sites in four areas (see table*). Findings indicate the need for technical support and education on how to incorporate guideline suggested content and assessments for SCPs into practice. SCP Content / Assessment COC sites % Non-COC sites % p-value *BC treatment summary 100 43 0.002 *Current disease status, late- and long-term effects 91 43 0.02 *Surveillance and monitoring activities 91 29 0.003 Anxiety / distress / depression 86 57 ns (not significant) *Summary of current medications 82 29 0.02 Cognitive function 77 57 ns Fatigue 77 43 ns Functional / performance status, areas of patient concern 73 29 ns Pain 73 43 ns Patient lifestyle and behaviors 68 57 ns Description of co-morbidities 68 29 ns Immunization and infections 64 43 ns Sexual function 64 43 ns Sleep disorder 64 43 ns

Abstract P1-09-15: Randomized clinical trial assessing the impact of survivorship care plans on survivor knowledge

Abstract Purpose: Efforts to inform survivors about long-term risks and planned follow-up after cancer treatment have increased. Survivorship Care Plans (SCPs) and care planning sessions have been recommended since 2005, yet the benefits of both SCP provision and care planning are only now being assessed. The impact of SCPs separate from care planning sessions is unclear, however SCPs alone require less time and cost to provide than SCPs combined with care planning sessions. We hypothesized that SCPs alone might enhance patient knowledge. In a randomized trial, we assessed change in patient knowledge of diagnosis, treatment, late/chronic side effects and followup care pre and post receipt of SCP. Methods: Patients who completed primary treatment within the past 2 years for Stage 0-3 breast cancer were consented, enrolled, and randomized to immediate (intervention) versus delayed receipt (control) of an individualized SCP without care planning. All participants completed the Wisconsin Survey of DiagnOsis and Management in Breast cancer (WiSDOM-B), a test of knowledge about one’s own breast cancer diagnosis, treatment and late effects scored out of 40 points. The survey was completed at both baseline and at four weeks (prior to delayed receipt); the primary outcome was change in score. The study was designed with 90% power to detect a between-group difference of 4 points (out of 40 possible). Results: Between November 2013 and March 2014, we recruited 64 women aged 36-78 with Stage 0-3 breast cancer. Most participants were Stage 1-2 (n=50, 79%) with n=7 (10.9%) in Stage 3. Most had received chemotherapy (62.5%), endocrine therapy (89.1%), or radiation (76.6%). At baseline, the average WiSDOM-B score was 28.3 out of 40 (70.8%), range 15.5-38.5. There was no evidence of change in score from baseline to four weeks for either the immediate SCP group (+0.41, 95% CI [-0.97,+1.79]) or delayed receipt control group (+0.95, 95% CI [-0.48,2.38]). Observed variation was consistent with sample size assumptions, and the observed treatment difference (-0.55, 95% CI [-2.53,1.44], p=n.s.) ruled out the prespecified clinically significant effect size of +4.0 (+10%). Overall, participants scored better on questions testing knowledge of diagnosis (side, year of diagnosis, lymph node test results, receptor status, and stage) and surgical side effects than on questions testing knowledge of other treatment (chemotherapy, radiation or endocrine therapy) side effects. Participant satisfaction with knowledge and care team communication was collected pre and post SCP, as well as feedback on SCP content and use of the SCP. These and analyses of selected questions shown to change post SCP by Nissen et al will also be presented. Conclusion: In a controlled, randomized clinical trial, receipt of a SCP without care planning sessions did not appear to significantly increase survivor knowledge about cancer diagnosis, treatment and followup as assessed by the WiSDOM-B survey. Efforts to improve survivor knowledge should investigate the impact of care planning sessions or other interactive health information tools. A second study of patients (n=64) randomized to immediate or delayed receipt of SCPs, in conjunction with care planning sessions, is currently enrolling. Citation Format: Amye J Tevaarwerk, Kevin A Buhr, Kari B Wisinski, Mark Burkard, Mindy Gribble, Willam Hocking, Wenjun Sun, SarahMaria Donohue, Jamie Zeal, Abigail Terhaar, Douglas A Wiegman, Mary E Sesto. Randomized clinical trial assessing the impact of survivorship care plans on survivor knowledge [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-09-15.

Primary care provider (PCP) views on survivorship care plans (SCPs) generated by an electronic health record (EHR).

168 Background: SCPs may address inadequate provider-to-provider communication but PCP views regarding EHR-generated SCPs have not been assessed. A multiple choice survey was used to evaluate an EHR-generated SCP for appropriate content, length, perceived accuracy, need for updates and preferred method of delivery (the Clinican survEy of Care Plan [ChECkuP]). Methods: PCPs were recruited from the Wisconsin Research and Education Network (WREN), a cohort of family practitioners working in urban and rural Wisconsin. WREN practitioners were e-mailed and invited to participate if they currently saw patients with a breast cancer history. PCPs were provided a sample 10-page EHR-generated SCP and completed the ChECkuP at one time point. Results: 36 PCPs participated in Summer 2014. Most PCPs reported the sample EHR-generated SCP as accurate (75%), easy to use (58%) and useful in coordinating care (75%). Few felt using SCPs would disrupt their clinic workflow (11%) or that SCP use would take too much time (14%). Most (75%) preferred receiving SCPs via EHR, vs paper (36%), having the patient provide (19%) or viewing the SCP on an external website (6%). Most deemed consistent provision (69%) and standard location (78%) important. With regards to timing, 42% reported desiring an SCP immediately after completion of primary treatment. However, PCPs requested some changes: 33% requested a shorter SCP (ideally 1-3 pages) and 53% advocated for SCPs specifically written for PCPs rather than producing one document for both PCP and survivor. Also, most (53%) felt that SCPs should be updated based on information changes rather than on a regular schedule, including changes to screening guidelines (100%), late or long term side effects (89%) and followup recommendations (95%). Conclusions: PCPs regarded EHR-generated SCPs as useful in coordinating care between oncologists and primary care. PCPs desired a standardized SCP accessible within the EHR. EHR-generated SCP content, length and layout will be revised based on the feedback provided. Clinical trial information: OS12122.

Associations among survivorship care plans, experiences of survivorship care, and functioning in older breast cancer survivors: CALGB/Alliance 369901.

Survivorship care plans (SCP) are recommended for all cancer patients and could be especially useful to survivors 65 years and over ("older"). This study examined receipt of SCPs among older breast cancer survivors and whether SCPs were associated with improved patient-reported outcomes. Three hundred and twenty-eight older women diagnosed with invasive, nonmetastatic breast cancer between 2007-2011 were recruited from 78 cooperative-group sites. Participants completed telephone interviews at baseline and 1-year posttreatment. Regression analyses examined SCP receipt (yes/no) and functioning (EORTC-QLQ-C30), cancer worry, and experiences of survivorship care (care coordination, knowledge). Only 35% of women received SCPs. For each 1-year increase in age, there was a 5% lower odds of receiving an SCP (odds ratio (OR) = 0.94, 95% confidence interval (CI) 0.91-0.98, p = 0.007). Besides age, no other factor predicted SCPs. SCP receipt was associated with greater knowledge and understanding of requisite follow-up care (p < 0.05); however, functioning was not significantly different among those with vs. without SCPs. Receipt of care plans was limited. SCPs improved understanding of breast cancer follow-up care among older survivors, but did not impact functioning one year post-treatment. To impact functioning and salient needs of the growing cohort of older survivors, survivorship care plans likely should be tailored to geriatric-specific issues. To improve functioning, SCP content should expand to include exercise, nutrition, polypharmacy, social support and management of symptom burden from cancer, and other comorbid conditions. To improve follow-up care for cancer survivors, SCPs should delineate shared care roles between oncology and primary care in managing recurrence surveillance, screening, and cancer sequelae.