bluuebunny/crossref_metadata_2025_split huggingface dataset:
Elucidating the endocrine therapy experience of South Carolina breast cancer survivors.
Authors: Bedi Julie Summey , Charron Elizabeth , Franco Regina A. , Olinger Matt , Dickes Lori , Mayo Rachel 
Published: May 2018

186 Background: Literature consistently shows high discontinuation and non-adherence rates for patients taking endocrine therapy (ET) for breast cancer treatment. The aim of this study is to understand from the breast cancer survivor perspective which modifiable aspects have the greatest impact on the likelihood of ET continuation. Methods: Twenty-two hormone receptor-positive breast cancer survivors under age 64 who had been prescribed ET since 2000 were recruited for participation in focus groups conducted in four South Carolina locations. Qualitative data analysis was completed by a three-member team using an inductive narrative approach. Themes were examined by participant decision to continue or discontinue ET. Results: Participants’ conversations centered around a quality of life cost-benefit analysis that they felt was unique to the individual and could not be generalized by providers. Main themes included the significance of the patient/provider relationship, the desire for a more holistic approach to care, and the need for affirmation in the decision to take ET (i.e. through breast cancer social network, family, faith, research). There was clear support for the utility of multidisciplinary cancer care teams. The roles of nurse navigator and rural pharmacist were specifically highlighted. Participants expressed concerns regarding ET’s damage to their bodies, and participants discussed the dilemma of not having enough time to spend caring for self. Conclusions: The few studies that have addressed currently used interventions to improve adherence showed little to no improvement over usual care. It is imperative that research be conducted that employs a patient-centered perspective. Knowledge gained through further study exploring patient concerns, multidisciplinary teams, and holistic care are needed. There is also a need for novel patient-centered interventions in research to improve compliance and enhance the ET experience for breast cancer survivors.
Serial concept mapping: A tool to assess the evolution of medical student learning about cancer survivorship.
Authors: Fogarasi Miklos C. , Eichengreen Roy P 
Published: May 2018

21 Background: Concept mapping (CM) fosters meaningful learning yet its use in cancer education is rare. Serial CM as a learning tool may offer novel ways to promote critical thinking about complex medical issues. We introduced CM in our Cancer Survivorship (CS) elective to study the evolution of students’ conceptual learning, to offer feed-back and as a tool for inter-professional and team-based education. Methods: The study was funded by an institutional grant and received IRB exemption. Eleven 2nd year medical students and 2 pre-med students enrolled. Oncologist-lead classes were co-facilitated by a primary care physician, a survivor, caregivers or other health care professionals. Students were trained using cMAPTools on week 1 and applied domains of the Quality of Life (QoL)-CS tool by City of Hope to their CMs. Feedback given after each round of mapping assessed adequate use of CS concepts and creation of meaningful linkages. Results: Map #1 (week 1) tested baseline perceptions. These maps displayed a wide-range of complexity, a largely non-hierarchical structure with rare connections and a sense of overload by the scope of CS issues. Map #2 (week 4) explored physical and spiritual challenges of CS from a primary care physician and a cancer survivor. Here improved maps presented concepts more clearly but linear thinking with limited crosslinks was still observed. Map #3 (week 8) about social aspects of CS followed lively sessions with a social worker and family caregivers. Emerging cross-links reflected a deeper understanding of survivor issues. Final CMs will be based on interviewing a panel of survivors and should aid students in creating a thorough Survivorship Care Plan. Team-based and inter-professional maps were well received. Conclusions: Serial concept mapping exposes progressive understanding of Survivorship issues during a one-semester elective. CM facilitates the learning of relationships among complex survivorship topics. Inter-professional and team-based CM is feasible. By mapping issues to QoL domains, students practice patient-centered critical thinking. Challenges include low reproducibility due to changing concepts, and limited practicality once concepts grow too large.
A social ecological study of access to breast cancer survivorship services.
Authors: Lefkowitz Deborah 
Published: May 2018

31 Background: Survivorship research has largely focused on the survivorship care plan and the transition back to primary care. Long-term survivor service needs remain understudied, particularly in the fragmented healthcare systems where many Americans receive their care. While numerous services support breast cancer patients through treatment, there is a sharp drop-off once treatment has been completed. This study investigated survivors’ post-treatment service access and use in a geographically dispersed, medically underserved population. Methods: Using a social ecological framework to analyze the interplay of individuals, healthcare facilities, and community resources, this study combined in-depth, semi-structured interviews with survey data from 75 breast cancer survivors across 27 cities in a two-county Affordable Care Act rating area. Interviews focused on challenges of access, available resources, and how resources were used. Surveys recorded service use, referral sources, and unmet needs across 27 services (e.g., psychosocial, financial, lymphedema) and information sources (e.g., online, support group, print materials). Results: Survivors ranged in age from 25 to 87, and 0 years of survivorship (still in active treatment) to 41 years (54% at 5+ years, 27% at 10+ years, and 12% at 20+ years). Access to survivorship services was accomplished in community settings (e.g., breast cancer nonprofits) more often than in medical facilities. In-person support groups were the most widely used resource, even by long-term survivors (over 40% were survivors of 5+ years), and played a key role in providing access to other services and information (e.g., nutrition, yoga). Many survivors addressed the lack of services through resourceful do-it-yourself solutions. Nevertheless unmet needs remained across the service spectrum. Conclusions: Community-based resources were pivotal in enabling access for a dispersed, underserved population and may serve as high-leverage points for interventions in healthcare systems. Research was supported by the National Cancer Institute of the National Institutes of Health under Award # F31CA192478.
Overcoming suvivorship care planning implementation challenges through decentralization.
Authors: Rosenberg Carol A. , Hensing Thomas A. , Brockstein Bruce , Green Linda , Patel Anisha , Still Nadia , Wujcik Debra , DiGiovanni Laura , Tilley Carrie , Stricker Carrie Tompkins 
Published: May 2018

38 Background: To meet Commission on Cancer accreditation requirements, cancer programs must implement processes to monitor the dissemination of survivorship care plans (SCP) for patients with Stages I-III cancers who were treated with curative intent and completed active therapy. Challenges of SCP delivery across disease sites include lack of designated/trained staff, time burden, knowledge of current evidence-based guidelines, and sustainability. We describe the challenges NorthShore University HealthSystem Kellogg Cancer Center (NKCC) and their Living in the Future (LIFE) Cancer Survivorship Program faced in meeting this standard and how evolving the SCP delivery process has resulted in a sustainable model. Methods: LIFE implemented a technology-based SCP tool using a centralized consultative model led by a nurse practitioner (NP) with specialized survivorship training. Physicians referred eligible patients to the survivorship clinic for an education visit where they received a SCP from the NP. Since the centralized model was dependent on one person for delivery, a more sustainable model was needed. NKCC transitioned to a decentralized process, moving SCP creation and delivery responsibility to all oncology care providers (OCPs). Although not all OCPs had specialized survivorship training, care quality was supported by automated SCP creation based on evidence-based care recommendations embedded in the technology. Results: To date, 143 evidence-based SCPs have been delivered since tool implementation in April 2017. During the centralized model (April 25– June 30) 67 SCPs were created by the lead LIFE NP; 76 were created during the decentralized process while the lead NP was on leave (July 3 – Oct 1). By using a technology-based SCP, OCPs incorporated SCP delivery into their workflow and no longer had to refer patients to a separate clinic. Conclusions: This project demonstrates the feasibility of a sustainable, decentralized process using a technology-based SCP as an option for augmenting centralized SCP delivery. A comparable number of patients received a SCP during both processes with an equivalent number of SCPs being delivered via the decentralized model by OCPs supported by evidence-based technology.
A proposed multidisciplinary model providing comprehensive breast cancer care.
Authors: Cornell Lauren , Pruthi Sandhya , Mussallem Dawn 
Published: May 2018

43 Background: Strategies to detect and treat breast cancer continue to improve, and as such, the number of survivors has grown dramatically. To date, there has not been a well-established model to provide cohesive care for breast cancer survivors. Care often feels fragmented and important issues are overlooked due to lack of continuity. The adoption of Survivorship Care Plans has aimed to fill this gap in care, but the literature still demonstrates that our patients’ needs are not being met. Methods: We present a comprehensive model for breast cancer care, within a multidisciplinary breast center, which incorporates consistent management from time of diagnosis through survivorship. This model utilizes the appointment of a dedicated breast internist that meets with each patient at the time of diagnosis and again assumes care at time of survivorship. The breast internists or “onco-generalists” have specialized training in breast cancer/survivorship and work alongside the entire multidisciplinary team. This unique approach incorporates individualized surveillance, integrative management of late treatment effects, and appropriate risk reducing lifestyle education. Results: The inclusion of a dedicated breast internist into survivorship care has been the standard within our center for over 10 years. With this model, we have found that survivorship care is more holistic with a focus on the patients’ overall needs. There is dedicated time to individualized risk assessment, appropriate surveillance, and modifiable risk factor education. The model also allows for incorporation of integrative medicine including mindfulness, acupuncture, and massage therapy to improve quality of life for patients. With this model, patients do not feel the abandonment that is so often experienced by survivors, but rather they feel empowered to enter their new life as a survivor. Conclusions: Continuity of care during and after breast cancer treatment remains a significant issue. By designating an internist with specialized breast training who initially meets with patients upfront, we have been able to create a more integrative approach to survivorship care, which encompasses the patients’ needs both surrounding and outside of their cancer diagnosis.
Partnership in Cancer Survivorship Optimization (PICASSO) project: An Indian Cancer Society (ICS) initiative for cancer survivorship program in India.
Authors: Kurkure Purna Arun , Dhamankar Vandana Salil , Joshi Shreya , Jha Shekhar , Nair Sheila , Goswami Savita 
Published: May 2018

46 Background: Ugam is a support group of childhood cancer survivors from After Completion of Treatment (ACT) clinic at Tata Memorial Hospital (TMH), functioning under umbrella of Indian Cancer Society (ICS), not for profit organisation. Ugam’s mission is empowerment of survivors and advocacy. ACT-Ugam has provided role model for holistic care to cancer survivors.Project PICASSO (Partnership in Cancer Survivorship Optimization) is developed by ICS to promote & facilitate paediatric cancer unit (PCU) based ACT clinic & provide psychosocial support for holistic care of cancer survivors across the country. Methods: A survey was conducted for identifying the survivorship practices in pediatric cancer units (PCU) in Mumbai based hospitals to identify the partners who will setup PCU based ACT clinic. ICS will provide professional and technical assistance to ACT Clinic survivors to enable them to live a productive life. This will include identifying survivor’s need, psycho social counseling, career counseling / aptitude tests, registering them as Ugam members, funding for education if required, soft skills development programme for job readiness, facilitating job placements, survivorship care plan & information material. Ugam database was reviewed for its experience in the field so far to extrapolate the services to partner institutes under PICASSO. Results: Project PICASSO was launched by ICS in May 2016. Among five Mumbai based PCUs who participated in survey, only one (TMH) has organized survivorship program. Communication is ongoing for launch of the project with other units. Total Ugam members- 280 ( 2009 to date), male:female 195:85. Career guidance and aptitude testing provided to > 50 survivors, job placements 9, educational & vocational scholarships through ICS and by referring to other sources > 100. International scholarships to present at conferences: 5. Conclusions: Existing model of Ugam is marching towards fulfillment of its mission of empowerment and advocacy. Expansion of Ugam activities to include more survivors from other partnering units will lead to development of a national care model for cancer survivors.
A community based consultative survivorship program for breast cancer survivors.
Authors: Lu Kit Yu , Lee Theresa M. , Lanigan Megan , Rudge Beth , Torp Lisa 
Published: May 2018

47 Background: Many organizations have recognized the importance of longitudinal care for Breast Cancer Survivors (BCS) as they remained at risk for treatment related side effects (TRSE) that can greatly impact their health and quality of life. Various models of Breast Cancer Survivorship Program (BCSP) have been proposed. In October 2016, we implemented a BCSP using a consultative model with the goals to create a systematic approach to capture patients’ concerns, coordinate on-going care, standardize survivorship recommendations, and track care plan delivery compliance. Methods: Our Survivorship Nurse Practitioner (SNP) meets with patients in a one-on- one consultative visit after receiving electronic referral. Patients are given a comprehensive survey to assess symptoms and concerns following their treatment. Based on survey, SNP provides personalized education about their concerns. SNP also makes appropriate interventions and arranges referrals for supportive care services. After the visit, SNP generates a care plan and a consultative letter detailing the patient’s concerns and provides further recommendations for interventions and follow up care. SNP leads a quarterly Multidisciplinary Conference to educate treating providers and supporting staff regarding TRSE management according to standard guidelines and evidenced based approaches. Results: From Oct 2016-Oct 2017, 252 BCS were seen at our BCSP. BCS reported high satisfaction with better understanding and coping with their symptoms after being seen. 100% of oncology providers reported better understanding about BCS's concerns and felt more confident about TRSE management. Primary providers also reported higher satisfaction with communication across specialty. The ability to identify BCS and to track care plan delivery compliance was also more streamlined. Conclusions: We elected for a consultative approach because it allowed for a dedicate time to review all components of survivorship. It also created a formalized way to better understand the needs of our survivors. In addition, this approach empowered the patients to discuss TRSE with their providers and enabled the care team to integrate survivorship care throughout their subsequent visits.
Comparison of two breast cancer survivorship treatment summary and care plan (TSCP) documents.
Authors: Williams Eileen , Borgert Andrew , Peterson Linda Kay , Dietrich Leah L. 
Published: May 2018

49 Background: The 2005 Institute of Medicine report recommended providing a cancer TSCP, but barriers including time needed to complete these documents led to limited implementation. In 2014, in order to facilitate delivery, ASCO released a streamlined version of a TSCP. The current prospective, randomized study compares a Breast Cancer ASCO 2014 derived template (concise TSCP) with a facility derived Breast Cancer TSCP template based on the “old” ASCO version and NCCN guideline recommended elements (detailed TSCP). Methods: Female breast cancer survivors who completed therapy at Gundersen Health System were randomized between a concise TSCP and a detailed TSCP. Subjects received a survey prior to their survivorship visit assessing their baseline knowledge of their breast cancer diagnosis and treatment (pre visit knowledge). After the visit, participants completed the same survey (post visit knowledge) and a satisfaction survey. Pre and post visit knowledge survey scores, patient satisfaction scores and time needed to complete the TSCP were compared between the two study groups. Results: Both TSCP groups showed significant improvement in patient-specific disease and treatment knowledge scores (% of applicable knowledge questions answered correctly) after their survivorship visit. There was no significant difference between the concise and detailed groups’ pre-visit knowledge score (mean 78% vs. 79%, p=0.88). Calculated difference between the groups’ post knowledge scores met the pre-determined threshold for non-inferiority (p=0.013). Conclusions: Our study demonstrates the value of a cancer TSCP and Survivorship visit in improving breast cancer survivors’ knowledge of their disease characteristics and treatment. The concise version was found to be non-inferior to the detailed TSCP in terms of patient knowledge and satisfaction and required less time to complete. These results assist us and other institutions in choosing a more streamlined version of TSCP without compromising patient knowledge or satisfaction. [Table: see text]
Expectations for survivorship care among hematology oncology and primary care providers.
Authors: Hansra Damien Mikael , Ramdial Jeremy , Ahn Eugene , Perre Anthony , Masar Lauren , Brock Alora , Walters Tamara , Randolph Kimberly , Alvarez Ricardo H. 
Published: May 2018

5 Background: Significant controversy exists between hem/onc & primary care providers regarding various aspects of survivorship care. Here we administer a 23 question survey to address these discrepancies. Methods: A 23 question (Q) electronic survey was created on www.surveymonkey.com and sent to providers at Cancer Treatment Centers of America, & The University of Miami Health Network. Survey included provider demographics (7Qs) and practice preference Qs (16Qs). Survey asked: who should be primary responsible for managing cardiotoxicity (CT), cardiovascular risk reduction (CRD), physical activity assessments (PA), nutrition (N), weight (W), anxiety depression panic disorder PTSD (ADPP), cognitive function (CF), fatigue (F), sexual function (SF), lymphedema (L), side effect of hormonal agents (SEH), side effect of targeted agents (SET), side effect of bone modifying agents (SEB), vaccinations (V), cancer screening (CS), sleep disorders (SD)? Answer choices were 1) Hematologist Oncologist (HO), 2) Primary Care Provider (PCP), 3) Both HO + PCP (BO), 4) Other (O). Results: 55 providers enrolled in the survey (92% physician 6% ARNP 2% other). 56% hem/onc, 7% PCP, 37% subspecialty. 56% hospital based, 20% academic, 16% multispecialty practice, 8% other. Survey results: (CT): HO 29%, PCP 5%, BO 60%, 0 6%, (CRD): HO 7%, PCP 49%, BO 36%, 8% O, (PA): HO 5%, PCP 45%, BO 38%, O 12%, (N): HO 5%, PCP 38%, BO 35%, O 12%, (W): 4%, PCP 47%, BO 31%, O 16%, (ADPP): HO 5%, PCP 33%, BO 38%, O 24%, (CF): HO 5%, PCP 33%, BO 45%, O 17%, (F): HO 4%, PCP 36%, BO 53%, O 7%, (SF): HO 5%, PCP 22%, BO 49%, O 24%, (L): HO 31%, PCP 7%, BO 36%, O 26%, (SEH): HO 62%, PCP 4%, BO 27%, O 7%, (SET): HO 69%, PCP 4%, BO 20%, O 7%, (SEB): HO 62%, PCP 4%, PCP 25%, O 9%, (V): HO 16%, PCP 42%, BO 36%, O 6%, (CS): HO 9%, PCP 38%, BO 47% O 6%, (SD): 3% HO, PCP 51%, BO 31%, O 15%. Conclusions: In our study we found that the majority of providers think PCPs should manage: CRD & SD; HO should manage: SEH, SET, SEB; BO should manage: CT, F. A minority of providers favored combined approach (BO) for: CRD, ADPP, CF, SD, L, CS in survivors.
Breast cancer survivorship care plan: Patient satisfaction with a web-based application.
Authors: Moore Anne , Carlson Anna , Kornhauser Naomi , Schneider Sarah E. , Andreopoulou Eleni , Cigler Tessa , Vahdat Linda T. , Webster Gloria , Guthrie William 
Published: May 2018

50 Background: The American College of Surgeons Commission on Cancer Standard 3.3 mandates that by 2018, oncologists provide Survivorship Care Plans (SCPs) to more than 75% of Stage 1-3 breast cancer survivors. Preparation and delivery of SCPs is time-consuming and requires dedicated staff commitment. Working with PatientsWithPower(PWP), a digital health company supporting patient decision-making for breast cancer, we developed a web-based SCP and surveyed patients regarding their satisfaction with the SCP. The objective of this study was to assess patient satisfaction with the PWP SCP. Methods: SCP’s were prepared using data extracted from the electronic medical record (EMR) and PWP software. A one-page SCP was presented to each patient by the Nurse Practitioner (NP) during a routine visit after patients completed active treatment. Results were reviewed after all surveys were completed. Fifty women with Stage 0-3 breast cancer participated in the IRB approved study and reported their satisfaction with the PWP SCP via online survey. Results: Using patient data in the EMR, the PWP plan took about 45 minutes to prepare. Once completed, NPs spent 10-15 minutes with each patient reviewing the SCP. Patient surveys indicated that 98% of patients felt it was important to receive a SCP, 84% planned to use it to plan follow up management, and 75% intended to share the SCP with their primary care physician. According to patients, the most valuable parts of the SCP were diagnosis and treatment history, and the follow up schedule. More than 70% of women requested additional information about future screening for recurrence, nutrition, and long-term side effect management. 92% of women appreciated the electronic “living document” that can be easily updated at subsequent visits. Conclusions: Presenting SCPs to patients is an essential component of high-quality cancer care. PWP’s online platform facilitates the development and delivery of SCPs by organizing and storing on-going patient data to make future SCP updates easy and efficient. Our patient satisfaction survey results underscore the value of SCPs, particularly for follow-up management and communications with primary care doctors.