bluuebunny/crossref_metadata_2025 huggingface dataset:
An integrative approach to personalized cancer survivorship care at an academic medical center.
Authors: Constine Louis S. , Termer Nancy K. , Holub David , Fung Chunkit , Adams M. Jacob , Dhakal Sughosh , Bruckner Lauren B. , Marsh Bethany , Kerns Sarah L. , Noyes Katia , Williams AnnaLynn , Fritsch Susan , Lustig Carol , Lynch Claire , Nelson Susan , Menchel Heather L. , Sahler Olle Jane , Milano Michael T. , Galka Eva , Shayne Michelle
Published: March 2017

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Background: Quality cancer survivorship care has multiple missions 1) develop personalized disease-specific treatment summaries (TS) and evidence-based survivorship plans (SPs), 2) foster recognition amongst Primary Care Providers (PCPs) of the consequences of cancer and its therapy, 3) coordinate care amongst providers, 4) use technology to foster communication and mining data, 5) train residents/fellows, 6) determine knowledge gaps for research, 7) engage community health providers, 8) publicize and raise funds, and 9) develop metrics to assess outcomes. Here we describe initial steps toward these goals. Methods: The University of Rochester Judy DiMarzo Cancer Survivorship program is a multidisciplinary effort across 7 centers involving oncologists, PCPs, social workers, integrated oncology, legal/financial services, and survivors. Survivors are identified at two critical time points: after (1) completion of primary curative therapy = transition visit, (2) discontinuation of routine oncologic follow-up and transition of care to their PCP = shared care visit. These visits are staffed within each cancer discipline. Trainees (15-20/year) probe existing evidence and draft TS/SP templates that are vetted by that cancer discipline. Patient needs are surveyed; institutional and community resources are identified. Results: In 3 years, 1037 patients had survivorship visits - 859 transition visits, 178 shared care visits. Cancers include breast (31%), head & neck (17%), lymphoma (15%), GI (15%), GU (11%), GYN (7%), lung (3%), melanoma and sarcoma (1%) with continuing refinement of systematic patient identification. Visits by year were: 120 in 2013, 266 in 2014, and 470 in 2015. Amongst the 1037 patients, the 6 most common needs were exercise, emotional, return to work, nutrition, financial, and pain. Conclusions: Our program is systematically embracing challenges to deliver evidence-based, individualized TS/SPs for survivors, as well as train future oncology providers in survivorship care. Current areas of focus are better engaging PCPs, ensuring program sustainability, improving technology use to mine data, measuring outcomes, establishing rural outreach, and fostering survivorship research.
Integrating cancer survivorship care into allogeneic BMT recovery.
Authors: Bugos Kelly , Stenger Sarah , Segura Smith Andrea , Johnston Laura , Gross Morgan , Knight Gayla , Lambert Suzanne , Muffly Lori S.
Published: March 2017

39

Background: AlloBMT patients are at risk for chronic morbidity and late effects. Prior to 2015, the Stanford BMT program conducted group classes at three months post-transplant to prepare alloBMT patients and their families for the transition to survivorship, but no formal cancer survivorship program existed. Cancer survivorship care is required by the Foundation for the Accreditation of Cellular Therapy ( FACT). In order to fill this gap, we developed a standardized pathway to survivorship care for alloBMT survivors. Aim: To implement an initial cancer survivorship care consultation with comprehensive symptom assessment, late effects monitoring, and development of a survivorship care plan (SCP) three to six months after alloBMT. Methods: Standard work was implemented including patient introduction to survivorship by the BMT nurses and Advanced Practice Providers [APP] and during group ‘moving home’ class; responsibility for referral to survivorship; metric tracking, and administration of patient survey. The survivorship visit included an evaluation by the patient’s BMT social worker, introduction to post-BMT nurse coordinator and consult with cancer survivorship APP. Eligible patients were alloBMT recipients receiving care in the outpatient setting. Results: From July 28, 2015 to January 25, 2016, 90% (66/72) of eligible alloBMT patients were referred to cancer survivorship by day 100, 66% (42/66) of referred patient s were seen in survivorship clinic by day 180, 33% (22/66) deferred the visit or were unreachable, 1% (2/66) died. Of the 42 patients who received a cancer survivorship visit, 38% (13/42) responded to a post-visit survey. Responses indicated the patients believed their health goals and needs were addressed, and a SCP in the context of a comprehensive visit was valuable. Conclusions: Integrating standardized cancer survivorship care into the alloBMT recovery period is feasible, satisfactory to patients, and adds a structured approach for long-term effects monitoring and treatment. Early experience and patient surveys demonstrate value in an individual visits 3-6 months after alloBMT with a focus on returning to life and goal oriented post-transplant care.
Patterns of surveillance testing in commercially insured patients with breast cancer across provider types: A regional study.
Authors: Walker Julia Rose , Fedorenko Catherine R. , Greenlee Stuart , Panattoni Laura , Greenwood-Hickman Mikael Anne , Barger Sarah , Kreizenbeck Karma L. , Conklin Ted , Smith Bruce , Blau Sibel , McGee Richard A. , Lyman Gary H. , Ramsey Scott David
Published: March 2017

4

Background: Oncologists, primary care physicians (PCPs), and other clinicians provide care for breast cancer patients following active treatment. Clinical practice guidelines are largely consistent in recommended number of clinic visits and annual mammograms. However, surveys of oncologists and PCPs have found variation in attitudes toward surveillance intensity, perceptions of care responsibility, and adherence to Choosing Wisely guidelines. This study examined if surveillance of patients with early stage breast cancer varied by whether they obtained follow up care with oncologists, PCPs or both. Methods: Cancer registry records for patients in Western Washington from 2007 to 2015 were linked with claims from two regional commercial insurers. Patients were selected if they had been diagnosed with stage I/II breast cancer and treated with mastectomy or lumpectomy + radiation. The surveillance period starts at the first 4 month gap in treatment (surgery, chemo, radiation) through 13 months from gap start or restart of treatment. Evaluation and Management (E&M) codes for visits and procedure codes for biomarker and advanced imaging (PET, CT, bone scan) were identified in claims. Specialty codes were used to determine type of provider seen. Physician visits were matched to tests using E&M codes in the ± 7 days around each test. Results: During surveillance, 2046 patients averaged 12.2 physician visits per patient [median: 10, IQR: 7-15]. Oncologists (92%) and PCPs (82%) were the most common specialties with an average of 4.0 and 4.2 visits respectively. 73% of patients received mammography (avg # exams = 1.6) , 37% biomarkers (avg = 2.7) and 16% advanced imaging (avg = 1.5). The majority of biomarkers and the largest proportion of advanced imaging occurred near an oncology visit. Conclusions: Patients frequently see oncologists and PCPs during early surveillance. Targeting oncologists for intervention on potentially inappropriate biomarker testing could have the largest impact on aligning practice with Choosing Wisely recommendations. [Table: see text]
A model for delivering survivorship care: Integrating the oncology and the primary care setting: Follow-up of the first cohort of patients.
Authors: Lorenzi Elena , Morello Lucia , Mazza Rita , Garassino Isabella Maria Giovanna , Cavina Raffaele , Giordano Laura , Carlo-Stella Carmelo , Santoro Armando
Published: March 2017

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Background: In our Institution, we started a survivorship care program that integrates survivors’ health care provided by the oncologist and the primary care physician (PCP).We present the follow-up analysis of the first cohort of patients (pts) enrolled from April to July 2015. Methods: We included adult pts affected by hematologic or solid tumors without evidence of disease from at least 5 years (yrs). They are referred to the PCP with a survivorship care plan. An online platform for cancer survivors (CS) and their PCPs will be available. Progression free survival (PFS), overall survival (OS) and treatment related clinical events were calculated after 17 months from the start of the project. Results: We analyzed data from 269 CS. The median age was 67 yrs, they were mainly females (77%). The most frequent histological types were breast (157), colorectal (37), and hematologic (30) tumors. 189 pts had an early stage disease. 161 pts received chemotherapy with 95 pts receiving anthracycline-based-chemotherapy (ABC), 86% at a cumulative dose > 240 mg/mq. 154 pts underwent radiation therapy (RT), 94% at a dose > 30 Gy. 58 pts received both ABC and RT. The 10-yr cumulative risk of secondary cancer (SC) was 4% with a median latency period from the first cancer diagnosis of 11.3 yrs. 15-yr OS was 98% (one patient died of myocardial infarction), and 15-yr PFS was 96%. The 10-yr cumulative risk of late cardiologic toxicity (LCT) was 11% and 37 pts developed cardiologic complications with a median latency period from treatment of 10.5 yrs. The adhesion to the survivorship care plan was 84%. 13% of pts returned to our Center. The main non-clinical reason for returning was the lack of confidence in PCP. No association was observed between ABC and/or RT exposure and LCT or SC development. Conclusions: In this cohort of patients a high risk of LCT was observed. The risk and latency of SC was similar to the ones reported in literature. The number of cardiac events and SC is too low to give solid conclusions about the association with therapeutic exposure. So far, the compliance of patients and PCPs with the program was high. More data and longer follow-up period are necessary to confirm the accuracy of this model of care.
Implementation of a novel primary care-centered clinic for survivorship care.
Authors: Radhakrishnan Archana , Choi Youngjee , Berger Zackary , Pollack Craig Evan , Dy Sydney Morss , Peairs Kimberly S.
Published: March 2017

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Background: Patients often face challenges in transitioning to the survivorship stage of cancer care and coordinating with primary care. Prior research has highlighted the uncertainty in who provides survivorship care, leaving patients “lost in transition”. Integrating primary care providers (PCP) into cancer care offers one potential solution. Expanding traditional PCP roles to participating throughout the cancer continuum and familiarizing PCPs with cancer patients’ needs can address this gap. We describe an innovative model of incorporating PCPs to delivering primary care to cancer survivors at a large academic institution. Methods: As one part of a plan to address an identified need for improving survivorship care for cancer patients at Johns Hopkins, PCPs and cancer survivorship care experts developed the Primary Care for Cancer Survivors clinic (PCCS) in 11/2015. The clinic receives referrals from the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center and patients are seen for either a one-time consultation or can transition their primary care to the clinic. We also are creating a database of internal and external referrals to meet the specific needs identified by patients. We descriptively analyzed the utilization of PCCS from 11/2015 through 9/2016. Results: A total of 35 patients have been seen at PCCS. The average age of patients was 56.8 (SD 12.4) and 32 were female and 3 were male. 24 patients identified as white, 8 black, 1 Asian, and 2 others. Most patients transitioned their PC to the clinic (n = 30). The majority of patients had breast (n = 19) and colorectal cancer (n = 5); 10 patients had metastatic disease (3 have deceased). Commonly, referrals were made to physical therapy, including pelvic rehabilitation and lymphedema management, and nutrition counseling. Conclusions: Patients with a wide variety of cancers and at all stages of disease were seen for survivorship care in the PCCS clinic. Integrating nutrition care, psychosocial support, exercise programs, and palliative care were key early factors in meeting patients’ needs. Continuing to assess and meet survivors’ individual needs and build referral networks are important next steps in the development of the clinic.
Survivorship care plan (SCP) program development within a large hospital network.
Authors: Garces Natalie , Eaton Tara , York Beth , Bailey-Dorton Chasse Margot , Brick Wendy G.
Published: March 2017

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Background: Barriers to SCP delivery are pervasive, with limited data available on strategies to address implementation barriers. Despite the variety of models for SCP-based survivorship care planning, there is a dearth of studies on SCP program development for larger hospital networks. Large networked hospital systems, including the Levine Cancer Institute (LCI), have unique challenges for implementing a SCP program. Methods: Beginning in 2014, LCI implemented a process for delivery of SCPs across its network of 8 Commission on Cancer accredited hospitals. Obstacles to implementation were evaluated and methods of establishing procedures for insuring SCP delivery were reviewed. Improvement in SCP delivery was measured over 3 years. SCP program development involved leveraging technology, developing processes for identifying eligible survivors, and engaging providers and practice managers in this key organizational initiative. Results: In 2014, the SCP program consisted of 3 advanced care providers (ACPs) in 3 LCI medical oncology clinics, delivering SCPs to 67 (2%) of the eligible 3,336 survivors. In the second year of implementation, 14 ACPs and 4 MDs delivered 348 (11%) SCPs to eligible survivors in 14 LCI clinics. By the end of the 2016 calendar year, it is estimated that > 1,029 SCPs ( > 25%) of eligible survivors will receive a SCP throughout the LCI hospital network. Conclusions: While challenging to deliver, SCPs are important both for cancer program accreditation and for communication between patients and physicians. At its large, multi-center cancer program, LCI has implemented a number of methods and protocols to insure that eligible patients receive informative and timely SCPs. LCI’s processes have resulted in an improvement in the number of SCPs delivered and have also served to eliminate obstacles to increasing the number of SCPs that will be delivered in the future. It is recommended that oncology practices consider the methods and interventions that LCI found helpful to improve SCP delivery in large hospital networks. It is also encouraged that oncology practices to continue to share their methods with other centers to promote eventual SCP delivery to eligible survivors.
Surveillance or symptom management? Insights from 5 years of caring for survivors.
Authors: Shaw Amy Elizabeth , Jennings-Shaw Peg Jo
Published: March 2017

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Background: One of the most widely held definitions of cancer Survivorship is that it begins "at the time of diagnosis and for the balance of life" (NCCS). An emphasis on providing Survivorship Care Plans (SCP), pushes many Survivorship Programs toward long-term surveillance and care planning for patients who have completed treatment. The needs of survivors who are in the period between diagnosis and completion of treatment are not addressed by SCP. In 2011, our multidisciplinary oncology group hired a board-certified Family Physician to develop a Survivorship Program that would serve the needs of cancer patients at the time of diagnosis and for the balance of life. We report here on what we have learned about our survivors after the first 5 years of caring for them. Methods: Cancer patients were referred to the program by oncology specialists, community physicians, or by patient self-referral. De-identified data for each case were entered into a database including cancer type, stage, treatment, age at diagnosis and at first visit, and primary reason for referral (surveillance, symptom management, or assistance with complex medical decision making). Results: During the 5-year period, 994 patients were seen, median age 61 years (min 26, max 94). Breast cancer was the most common (86%). Patients were referred for surveillance (46%), symptom management (49%), or decision-making (5%). Patients referred for surveillance decreased from 62 to 22%. Patients referred for symptom management increased from 36 to 57%. Patients referred for decision-making increased from 2 to 21%. Patients referred for symptom management were younger (median age 60 vs 63), more likely to have stage II, III, or IV disease (53 vs 34%), and more recently diagnosed (median 1 vs 4 years) than patients referred for surveillance. Conclusions: Over the past 5 years our patients' needs have forced our program to evolve away from surveillance and prevention for early-stage, lower risk patients at the end of their treatment. We are now focused primarily on managing the adverse treatment-related symptoms for patients with higher stage disease. We have observed that patients require and desire survivorship care throughout their cancer experience, not just at the end of treatment.
The use of electronic health record systems to create treatment summaries and survivorship care plans.
Authors: Gilmore Katherine Ramsey , Choi David K , Chapman Patricia , Lewis-Patterson Paula A. , Palos Guadalupe R. , Rodriguez Maria Alma
Published: March 2017

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Background: The Commission on Cancer’s recent mandate stated that accredited programs issue treatment summaries (TSs) with survivorship follow-up care plans (SCPs). ASCO’s model of survivorship care also supports the use of these documents. One of the primary purposes of the documents is to enhance coordination and communication between the oncology team and primary care providers. Here we describe the experience of a survivorship program in using electronic health records (EHR) to develop TSs and SCPs. Methods: An interdisciplinary team at an academic cancer center was appointed to develop clinical tools to facilitate the creation and dissemination of TSs and SCPs. Enhancements were made to an institutional off-the-shelf EHR system that automatically populated available treatment information to the TS. This system used SmartLinks to pull data from the primary source of entry (e.g. surgical history, chemotherapy administered, and cancer stage). Clinicians edited and added pertinent information not automatically generated using one of the 19 disease-specific templates that provided lists of common treatments for various cancers. Electronic routing functions existed to share TSs with external providers through the medical records department. Results: From March-Sept, 2016, 766 SCP were completed by 50 providers in 14 clinics. Reports were created in the EHR to track SCPs and TS metrics. Data was reported from the TS on both a patient level and aggregate level by provider and clinic. Patient level data allowed providers to track incomplete TSs and edit them directly from the report. Of the TSs completed, 528 (69%) have been shared with patients and 261 (34%) have been shared with their community-based providers. Conclusions: EHRs provide a mechanism to successfully create and share TSs and SCPs among team members and primary care providers. They promote patient-provider education and communication about follow-up care. Research is needed to determine how they enhance coordination and ultimately outcomes for long-term survivors.
What do social media savvy cancer survivors tell us about the state of survivorship programs?
Authors: Radford Diane Mary , Staley Alicia C. , Landercasper Jeffrey , Dietrich Leah L. , Vang Choua A , Borgert Andrew , Attai Deanna J.
Published: March 2017

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Background: Patients treated for cancer are surviving their disease in increasing numbers. The 2005 Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor - Lost in Transition resulted in a call to develop survivorship programs. The Commission on Cancer (CoC) standard 3.3 became effective in 1/2015 requiring the delivery of a survivorship care plan (SCP) at the completion of treatment. Many cancer patients use social media (SM) as a way to obtain support and information. We sought to determine if SM savvy patients have received a SCP. Methods: An IRB-approved survey was conducted via the online tool SurveyMonkey between 3/21/2016 and 4/2/2016. Patients were invited to participate via SM outlets reaching cancer-related communities including Twitter chats, Facebook groups, blogs, and targeted emails. Cochran-Armitage Trend test, exact version, was performed by year for % of survivors receiving a SCP. Results: A total of 312 patients responded. 63% had completed their treatment (excluding endocrine therapy). Of a total of 194 individuals only 11.8% (23) were given a SCP at the end of treatment. A breakdown by treatment completion year is given below. Of those who did not receive a care plan 65% (112/172) answered that it would still be helpful to receive one. Most SCPs (86%) were supplied in paper form. However, patient-reported preferences for SCP delivery were paper (50%), online patient portal (41%), and email (9%). Conclusions: Despite the IOM report and CoC standard 3.3, the majority of SM savvy cancer survivors (88.2%) do not receive SCPs. In the respondents to this survey, there was no significant increase from 2015 onwards, p = 0.11, confirming an Advisory Board survey that just over 1/3 of programs felt confident that they could implement 3.3 by 2015. The CoC has updated its standard such that 25% of eligible patients should receive a plan by 12/31/2016. According to these data, that goal of 25% may not be achieved. [Table: see text]
Development of phase-specific breast cancer survivorship care plans (SCPs).
Authors: Parsons Susan K. , Weisberg Tracey , Boehm Lauren , O'Rourke Arlene , Rodday Angie Mae , Linendoll Nadine , Erban John Kalil
Published: March 2017

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Background: There are nearly 3 million breast cancer (BC) survivors in the US. Among the recently diagnosed, accrediting organizations (e.g., Commission on Cancer) now require SCPs at the completion of curative therapy. Within the Oncology Care Model, the preparation and delivery of SCPs is recognized as one of the 13 quality metrics. SCPs, combining treatment summaries (TS) and follow-up care plans (FUCPs), assist patients and providers in the delivery of high quality long-term care. BC presents a unique challenge, as the risk of recurrence extends decades past initial treatment; adjuvant risk reduction may extend up to 15 years. Periodic FUCPs provide a mechanism to review updated information and may allow providers to catch up with longer term BC survivors whose care was delivered prior to SCPs. We explored the role of phase-specific SCPs within the heterogeneous BC survivor population. Methods: Oncologists and nurse practitioners (NPs) from the Breast Health and Survivorship Programs at Tufts MC, an academic medical center in Boston, and New England Cancer Specialists, a community-based private oncology practice in Maine--together caring for more than 2,000 BC survivors--convened to develop and test phase-specific survivorship tools. Using an adapted ASCO template for BC, TS were completed at the end of initial therapy by trained NPs. FUCPs for initial, 5-year, and 10-year visits were designed with clinical input, literature reviews, and existing guidelines. Results: FUCPs were pilot tested and refined before incorporation into the electronic health record. Further testing is planned to identify barriers to effective survivorship care, particularly involving documentation of changes in recommendations and the transition from oncologist to primary care physician. Conclusions: SCPs are critical for providing quality health care to BC survivors, but a single SCP, written at the conclusion of curative treatment, might not be sufficient to address changing needs of individuals as they progress through survivorship. Thus, phase-specific SCPs enable providers to focus on salient aspects of care that may change over time. Despite growing recognition of the value of SCPs, implementation remains a challenge across cancer programs.
Addressing survivorship challenges using a collective impact approach.
Authors: Migliore Santiago Patti , Guerrero Rose , Rajderkar Chinmaya , Vanevenhoven Carol
Published: March 2017

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Background: The American Cancer Society (ACS) estimates 352,830 cancer survivors in WA State today. We had a group of avid stakeholders in the WA CARES About Cancer Partnership wanting to address survivorship issues. The challenge was how to work together to focus on improving the quality of life beyond treatment, recognizing that no single organization has the ability to solve the issues alone. Individual organizations were going their own way creating a duplication of effort. What would it look like if we aligned resources? We had influential champions, grant funds, and a true sense of urgency for change. Methods: We turned to FSG and their research on collective impact. Phase 1 of a collective impact approach was completed. We formed a cross-sector group, mapped the cancer survivorship landscape utilizing state cancer registry data, ACS Survivorship Report and local facility input. In Phase 2 a common agenda was agreed upon. Shared measurements of success for Survivorship Care Plans (SCP) were set. Mutually reinforcing activities were developed in an action plan. Methods and frequency of communication were decided. WA Dept. of Health (DOH) was designated as the hub organization. Results: DOH provides adaptive leadership skills and the ability to mobilize people without imposing an agenda or taking credit for success. We hosted a GW Cancer Institute Executive Training on Survivorship, June 2015. We held a 2 day planning retreat to develop a common agenda and action plan, Dec. 2015. Developed and deployed survey for CoC accredited hospitals to create a baseline for SCP utilization and challenges, Feb. 2016. In May 2016 we hosted 1 day retreat for the leadership team to finalize its action plan and added a second priority to launch a pilot in Yakima County to partner with 2-1-1 to provide resources to survivors. We have moved from having uncoordinated plans to embracing a centralized system. Conclusions: We recognize the need to identify and catalog previously unnoticed resources and make them available statewide; perform ongoing evaluations to elicit feedback for decision making; and, the need for further study to determine if tailored SCP and 211 resources improve patient/provider survivorship experience and attain financial sustainability.
Piloting breast cancer survivorship care planning in a safety net hospital.
Authors: Garcia Sofia F. , Wortman Katy , Guevara Yanina , Hahn Elizabeth A. , Corona Maria E. , Shrestha Shakuntala , Khosla Paramjeet
Published: March 2017

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Background: Survivorship care plans (SCPs) include treatment summaries and follow-up care recommendations intended to improve patient care and well-being after cancer treatment. Limited research has yielded mixed results regarding SCPs' impact on patient and system outcomes, but emphasized provider burden as an implementation barrier. We created a patient-centered SCP template and implemented its delivery at a safety net hospital that serves primarily racial/ethnic minority patients. Methods: In a single-arm feasibility study, oncologists and advanced practice nurses used the template to deliver SCPs to post-treatment breast cancer survivors (BCS) in consultation visits. We assessed changes in patient-reported outcomes from baseline (pre-SCP) to a 3-month follow-up, as well as provider time burden. Results: Female BCS participants (n = 75; mean age = 58.5 years) were primarily African-American (73%) and had high school/GED education or less (61%). Average time since diagnosis was 3.7 years (SD = 3.8); all received surgery; most received radiation (84%), hormone (77%), and/or chemotherapy treatment (73%). At follow-up, a majority rated their SCPs as good to excellent (92%), easy or very easy to understand (84%), a good to excellent summary of their treatment (92%) and as motivation for healthy lifestyles (88%). BCS follow-up scores improved significantly from baseline on breast cancer knowledge (p = .02), self-efficacy (p = .03), the QLQ-INFO25 (p < .01), and the FACIT TS-PS satisfaction with health care staff communication subscale (p < .01). No significant differences between baseline and follow-up scores (p < .05) were found for overall treatment satisfaction, health behaviors, and health-related quality of life. Preparing and delivering SCPs took providers considerable time (M = 54 & 22 minutes, respectively). Conclusions: This pilot study is limited by a single-arm design, but results suggest that SCPs may be related to improved survivor knowledge, information, self-efficacy and communication with health care staff. The individualized, comprehensive SCPs were well received by BCS in a safety net hospital but delivery was time-intensive. These findings will inform future research trials and clinical care initiatives.
Survivorship care plan utilization and challenges.
Authors: Migliore Santiago Patti , Guerrero Rose , Rajderkar Chinmaya , Vanevenhoven Carol
Published: March 2017

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Background: Based on June and Dec. 2015 Survivorship Retreats hosted by WA Alliance for Cancer Survivorship (WACS), it was clear that staffing models, use of EMRs, cancer registry software programs or commercial products were program dependent with limited flexibility for facilities to adopt a single, state-wide, Survivorship Care Plan (SCP) model. Attendees at the retreats were concerned with financial sustainability of SCPs as the Commission on Cancer (CoC) requirement increased from 10-25-75% of all eligible patients by Dec. 31, 2018. The largest concern was the time spent on the preparation of the SCP. WACS wanted to validate resource needs across settings to identify needs/gaps being experienced. We asked the American Cancer Society (ACS) to conduct a survey of CoC accredited hospitals. Results would be limited to aggregate data and individual confidentiality would be maintained. Methods: ACS field staff made in-person appeals to each accredited program leveraging their existing relationship with CoC Liaisons. A 60% survey completion goal was set. A secure electronic survey was deployed in February. ACS staff promoted the project, followed up on non-responders, aggregated the data and prepared the results report. Results: We achieved a 70% participation rate for accredited programs. 75% of rural facilities, 71% urban but only 50% suburban facilities participated. Results showed they were spending 45 minutes to 2 hours to gather data to prepare the SCP and an equal amount of time being devoted to the patient SCP visit. There is a clear need and desire to have an efficient data gathering process for surveillance recommendations, latent side effect management and ready access for cancer site specific supportive care resources to reduce the time spent in preparation/delivery of the SCP and create a sustainable financial model. Conclusions: The transition from active treatment to survivorship care is a complex process, complicated by residual symptoms, educational needs and health risks. Our baseline information will inform our efforts to streamline the development of SCP as programs work to meet CoC goals. We plan to develop a survey to examine survivors recall and adoption of SCP recommendations to measure how SCPs are improving patient and facility outcomes.
A primary care education program regarding cancer survivorship care plans at the University of Wisconsin (UW).
Authors: Haine James Edward , Trowbridge Elizabeth R , Kamnetz Sandra A , Feldstein David , Wilke Lee G. , Sosman James , Donohue SarahMaria Hill , Sesto Mary E , Tevaarwerk Amye
Published: March 2017

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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]
Do patients learn from survivorship care plans?
Authors: Bodmann Joanna , Harr Bridgett Ann , Rybicki Lisa A. , Koyfman Shlomo A. , Geiger Jessica Lyn , Funchain Pauline , Joshi Nikhil Purushottam , Woody Neil McIver , Ives Denise I. , Hamker Jean F , Adelstein David J.
Published: March 2017

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Background: At the Cleveland Clinic, a formal, patient (pt) specific survivorship care plan (SCP) is given to all pts who have completed definitive treatment (DT) for loco-regionally advanced head and neck cancer (HNC). We sought to assess the impact of this SCP on pt understanding of disease and treatment, potential symptoms of recurrence, and follow up (FU) expectations. Methods: In an unselected series of HNC survivorship eligible pts, the same IRB approved survey was administered both before SCP delivery and again at the next routine FU. The survey evaluated pts’ pre-existing knowledge of the information included in the SCP, and whether it had improved and was retained over time. Results: Pre and post-survey responses were collected from 29 pts who had completed DT between 7-23 months (mo) prior. Eighteen (62%) had a diagnosis of oropharyngeal cancer, all were treated with intensity modulated radiation therapy and most (93%) received concurrent cisplatin. Only 24 of the 29 pts (83%) recalled receiving a SCP when queried at their next FU. However, even before SCP administration, most were well educated about their disease, its treatment, symptoms of recurrence, and FU expectations; all of which were reviewed in the SCP. The post-survey, administered at next FU, suggested that the only group to benefit from SCP administration were those who received it within 6 mo of DT. Conclusions: Pt understanding of disease, treatment and future expectations appears to improve after SCP administration only in those receiving their SCP within 6 mo of DT, likely reflecting ongoing pt education during subsequent FU visits. This small study supports current recommendations to administer SCPs within 6-12 mo of DT.[Table: see text]
Using a mobile app to enhance the uptake of survivorship care plans (SCP) for adolescent and young adult survivors of childhood cancer.
Authors: Schwartz Lisa , Szalda Dava , Psihogios Alexandra M , Ver Hoeve Elizabeth Shea , Daniel Lauren , Butler Eliana , Hobbie Wendy , Jacobs Linda A. , Ginsberg Jill P. , Fleisher Linda , Vachani Carolyn , Hampshire Margaret K. , Metz James M. , Hill-Kayser Christine E.
Published: March 2017

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Background: Survivorship self-management, including adherence to survivorship care plans (SCPs), is variable, especially among adolescents and young adults (AYA). Methods:The present study describes the development of a mobile application (app) for AYA survivors (AYA STEPS), which strives to improve survivorship self-management via a combined texting self-management program (THRIVE 2.0) and an electronic survivorship care plan generator (Smart-ALACC [Smart-Adult Living After Childhood Cancer], hosted on Oncolink.org). Results: AYA STEPS was developed by modifying an existing disease management app, LSTCare. The main feature of the app is the delivery of two-way text messages that are tailored to an individual’s SCP. The messages are designed to enhance uptake of the SCP with information, strategies for adherence, motivational messages, and appointment reminders. Patients may also text back with questions. The SCP and its related text information are customized based on input of patient characteristics and treatment history, such as age, time off treatment, and type of treatment (e.g., anthracycline chemotherapy, mediastinal radiation, cranial radiation). The app also houses a copy of the complete SCP document. The SCP is generated, via patient or provider, via an electronic platform that incorporates patient demographic information, cancer diagnosis, and cancer treatments received with checklist of options. Feedback on the app was provided by AYA ages 15 to 21 via a focus group (n = 5) and interviews (n = 5), through which qualitative data were collected. AYA reported high acceptability of a mHealth intervention to improve self-care as cancer survivors, especially the inclusion of tailored content from an individualized SCP as text messages. They also reported the app as feasible to download and maintain on their phones. Conclusions: We are about to begin a RCT that will test adherence to SCP for those who received the app and the SCP versus the SCP alone. We will report details of the app and the launch of the RCT. We expect high acceptability and feasibility with measured benefit to receiving the self-management app.
Use of telemedicine in the delivery of survivorship care plans among breast cancer survivors: Lessons learned at Kaiser Permanente East Bay.
Authors: Washington Pamela Kim , Tews Heather , Nguyen Dan-Thanh , Wade Leeina , Phan Trang , Reddy Mala N. , Lai Janet , Barnett Nicole M , Greer Jennifer , Shim Veronica
Published: March 2017

77

Background: Beginning in 2015, the National Accreditation Program for Breast Centers (NAPBC) requires accredited facilities to provide Survivorship Care Plans (SCP) to breast cancer patients treated with curative intent. Here we describe lessons learned with the use of telemedicine in the delivery of SCPs at Kaiser Permanente East Bay. Methods: SCP implementation followed a two-step process: patients who are diagnosed and complete treatment in 2016 are given a SCP at their last surgical or medical oncology appointment (YTD, n=8); 2) patients diagnosed in 2015 who completed treatment in 2015-2016 were contacted by a physician assistant and offered an appointment by telephone or in-person to deliver the care plan (n=152). Both clinic and telemedicine appointments consist of a detailed review of treatment received, post-treatment follow-up care, discussion of health education resources, and provision of referrals as appropriate. Patients also have the opportunity to ask questions about treatment and follow-up care. Results: Among patients diagnosed in 2015 who were offered a TAV or in-person visit, 44.0% preferred a telephone appointment. Actual appointment duration ranged from 10 to 30 minutes. Lack of co-payment and fees associated with transportation as well as loss of income due to taking time off work were the primary factors cited choosing telemedicine over in-person clinic appointments. Interestingly, no differences in member satisfaction scores for in-person vs. telephone visits were observed. Conclusions: Findings suggest telemedicine may be effective in the delivery of SCPs. Similar to rural settings, use of telemedicine in urban settings has a unique capacity to increase service to breast cancer patients.
Cancer costs and trends for newly diagnosed malignancies at an academic institution.
Authors: Lindauer Stephanie Purkat , Hinojosa Barbara , Jones Jessica Trevino , Mazo- Canola Marcela , Gelfond Jonathan , Lathrop Kate Ida
Published: March 2017

8

Background: The financial cost of cancer is a large burden and continues to rise substantially. Expenditures can be divided into the initial phase after diagnosis, the continuing phase, and the last year of life. Typically costs are greatest in the initial phase and last year of life. The major determinant of cost during the initial phase is hospitalizations. We sought to examine cancer costs of patients with newly diagnosed malignancies at an academic institution during the initial phase and compare outcomes based on insurance status. Our institution serves a significant portion of South Texas, a population facing serious cancer health disparities. Methods: This was a prospective, non-randomized study evaluating patients with new cancer diagnoses from 2014-2016 at an academic hospital. Patients meeting eligibility criteria were screened and consented for participation. A total of 74 patients were included in analysis. Results: The average age was similar in both the self-pay group and the insurance group (including government-sponsored, private, and county funding); 51.1 vs 54.8 years respectively (p = 0.09). Ethnicity between the two groups was not significantly different, 46.2% were Hispanic in the self-pay group vs 45.8% in the insurance group (p = 0.94). The majority of patients in both groups presented with advanced disease, 61.5% in the self-pay group vs 70.8% in the insurance group (p = 0.44). The average number of days of hospitalization was significantly higher in the insurance group compared to the self-pay group, 15.4 days vs 10.6 (p = 0.04). Congruently, average total cost of hospitalization was higher in the insurance group, $96,200 vs $64,200 (p = 0.05). 26.9% of patients in the self-pay group enrolled in hospice within 6 months of their diagnosis vs 20.8% in the insurance group (p = 0.26). Conclusions: With the limitation of a small sample size, our study demonstrates a statistically significant difference in hospitalization days and cost in insured vs uninsured patients with new cancer diagnoses at an academic hospital.
Caregiver needs during transition from acute cancer: Findings from focus group discussions with cancer survivors and caregivers.
Authors: Tolbert Elliott , Bowie Janice , Snyder Claire Frances , Makia Barraw , Smith Katherine Clegg
Published: March 2017

84

Background: The Institute of Medicine recommends that all cancer patients receive a survivorship care plan to help alleviate challenges faced when transitioning from acute treatment to long-term survivorship. As nearly three million Americans act as caregivers for a loved one with cancer, it is important that the survivorship care planning process consider the needs of not only the survivor, but also caregivers. Methods: In preparation for a randomized controlled trial of survivorship care planning, we conducted four focus groups with adult survivors of breast, prostate, and colorectal cancer (n = 28) and two with self-identified caregivers of people who had been treated for these three cancers (n = 20). Focus group participants were recruited from a large, urban academic medical center and a rural community cancer center. Discussions focused on needs and expectations during the transition from cancer treatment to survivorship. Each discussion was recorded, transcribed, and analyzed qualitatively. Data analysis also included review of findings by an advisory board of patients and caregivers. Results: Six themes emerged, some raised by both survivors and caregivers, and some only by caregivers. The need for information on side effects and follow-up care recommendations, confusion regarding the role each provider plays once treatment is complete, and the need for resources and support to help deal with issues such as physical and emotional distress and living a healthy lifestyle were brought up by both caregivers and survivors. In addition, caregivers discussed uncertainty about their role as a caregiver, their own mental and emotional health needs, and the idea that adjusting to ‘a new normal’ is not just for the patient, but also caregivers. Conclusions: Caregivers have distinct needs in addition to those of the patient. These caregiver concerns may need to be addressed during the survivorship care planning process. Based on these findings, we are including a caregiver-specific resource in our survivorship care planning randomized controlled trial.
Survivors’ stories are the teacher: Narrative mapping and survivorship care plans as educational innovation for pre-clerkship medical students.
Authors: McManamon Alyssa Claire , Thompson Marie
Published: March 2017

90

Background: The IOM’s recommendation for Survivorship Care Plans (SCPs) has met slow adoption, further hampered by growth in survivorship. Inviting patients into SCP creation supports individualized care goals. Narrative mapping is a visual tool to navigate challenging communicative landscapes. We describe an educational innovation that values SCP completion, engages physicians & trainees to solicit patient narrative, and allows emergence of collaborative care. We hypothesized it is feasible to: provide preclerkship medical students “legitimate peripheral participation” via meaningful use of the electronic health record (EHR) to review an individual patient’s cancer history; engage survivors and learners through narrative mapping to improve the SCP process; provide a student-prepared, clinician/survivor vetted SCP, leveraging UME in support of survivors’ needs. Methods: 170 second-year students at the Uniformed Services University were invited to enroll in a pilot curriculum on cancer survivorship. Oncology providers identified patients without an SCP and interested in sharing their stories since time of diagnosis. Survivors and students (in separate 90 min workshops) created and shared drawn maps of personal health stories. Students received EHR training to inform use of the ASCO SCP template for an assigned survivor. Following student-survivor review of survivors’ narrative maps, triads (student-survivor-oncologist) met to finalize SCPs for EHR upload. Results: Over three months, 18 medical students drafted an SCP on behalf of an assigned survivor. 19 survivors received an SCP following creation and sharing of their narrative map. Post-pilot, 95% of participating students submitted written reflections (uniformly positive) and survivors requested to remain involved in UME, finding meaning in sharing their stories. Conclusions: Survivors are enthusiastic educational partners in complex care environments. It is feasible to engage medical students with cancer survivors to create SCPs, with narrative mapping as a contextualizing approach. UME learning needs dovetail with those of survivors to address the call for SCP adoption.