bluuebunny/crossref_metadata_2025 huggingface dataset:
Analysis of weight trends over time in female survivors with triple negative breast cancer.
Authors: Hansra Damien Mikael , Rollins Rebecca , Rados Karen , Johnson Anita , Ramey Johnathan , Pannell Rachel , McKnight John Edward , Randolph Kimberly , Pabbathi Haritha , Ninan Mary , Alvarez Ricardo H.
Published: May 2018

28

Background: Triple-negative breast cancer (TNBC) is a subtype of breast cancer (BC) with unique clinical-pathological & prognostic characteristics. Studies have shown obesity to be risk factor for TNBC. Furthermore, patients (pts) with BC and overweight/obesity have a worse prognosis. Here we investigate body mass index (BMI) & weight trends among BC survivors. Methods: A retrospective review BC pts at Cancer Treatment Centers of America Atlanta from 2012-10/27/17. Definition of a survivor: pts who have completed definitive therapy with no evidence of disease. Survivor BMI & weight gain (kg) calculated from chart review. Weight gain in kg was recorded post chemotherapy, at 3, 6, 9, 12 month follow up. Inclusion: Pts with ER-PR-HER2- (TNBC), adults > 18 yo, pts who completed chemo (neoadjuvant or adjuvant) & surgery +/- radiation. Exclusion: Pts who died, had relapsed local disease or metastatic disease; missing BMI data; currently on chemotherapy; who did not receive chemotherapy; missing continuous BMI data or pathology report; lost to follow up. Results: 1756 BC pts with stage IA-IIIC identified, 300 pts identified as TNBC. A total of 134 patients met full inclusion/exclusion survivorship criteria. Average age of survivors = 52 (range 25-76). Stage: I = 38%; II = 50%, III = 12%. BMI categories: 0% underweight (BMI < 18.5 kg/m2), 15% normal weight (BMI 18.5 to < 25 kg/m2), 18% overweight (BMI 25 to < 30 kg/m2), 55% obese (BMI ≤30 kg/m2), 12% morbid obesity (BMI ≤ 40 kg/m2). Average BMI for all survivors = 32.23 +/-0.59 kg/m2 (range 19-52 kg/m2); post chemotherapy weight change = 0.53 +/-0.41 kg; at 3 month follow up = -0.16 +/-0.51 kg; at 6 month = -0.02 +/-0.54 kg; at 9 month follow up 1.20 +/-0.59 kg; at 12 month follow up = 2.25 +/-0.61 kg. BMI by stage: I = 32.81 +/- 1.00 kg/m2; II = 32.12 +/- 0.91 kg/m2; III = 32.44 +/- 1.27 kg/m2. Conclusions: In our study, female survivors with TNBC present with obesity and gain weight after chemotherapy. Also, weight gain continues at 9 & 12 months post definitive treatment. Survivors with TNBC should be treated with intensive weight loss interventions given that overweight/obesity is a risk factor for recurrence, worse prognosis, & cardiovascular events.
Assessing key stakeholders' knowledge, needs, and preferences for cancer survivorship care plans.
Authors: Zullig Leah L. , Berkowitz Callie , Miller Julie , Ramos Katherine , Dolor Rowena , Koontz Bridget F. , Zafar Yousuf , Allen Deborah H. , Tenhover Jennifer , Bosworth Hayden B
Published: May 2018

30

Background: Survivorship care plans (SCPs) are individualized documents that summarize cancer treatment received and provide guidelines for monitoring and maintaining survivors’ health. While SCPs are intended to facilitate care coordination, they are rarely used in the primary care setting. We aimed to understand the informational needs and delivery preferences of PCPs, cancer survivors, cancer specialists, and nurses related to SCPs. Methods: We conducted semi-structured interviews with a purposeful sample of PCPs (n = 10), cancer specialists (n = 5), nurses (n = 5), and cancer survivors (n = 5). After reviewing a sample SCP based on the published ASCO template, participants were asked about acceptability, appropriateness, feasibility, fidelity, implementation, and sustainability. De-identified transcripts were qualitatively analyzed using NVivo software. Results: 25 interviews were completed (RR 45%). Emergent themes included informational needs and delivery preferences. Informational needs include clarifying roles and responsibilities of allied professionals; the roles of the PCP for follow-up care should be clear, outlined and with content summarizing their responsibilities regarding screening, and surveillance. Additionally, SCPs should emphasize side and late effects of cancer treatment for the benefit of patients and providers. Delivery preferences include using sustainable and accessible electronic formats to improve provider communication and streamlining documentation for the intended audience. Electronic SCPs could be frequently updated with pertinent information about patient needs and care over time. Conclusions: Understanding the needs and preferences of PCPs may address current limitations of SCPs in coordinating survivor care. Future SCPs may be electronic and accessible, with content and guidance targeted to the PCP’s role.
Ascertaining cancer survivors in Ontario using the Ontario Cancer Registry and administrative data.
Authors: Chaudhry Munaza , Chan Catherine , Su-Myat Sue , De Rossi Stefanie , Zwicker Victoria , Ross Jillian , Sussman Jonathan
Published: May 2018

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Background: The number of cancer survivors in Ontario has grown rapidly due to increasing incidence and advances in screening, diagnostic technologies and treatment. However, there is a lack of information to plan, monitor and improve follow-up care. Using the Ontario Cancer Registry (OCR) and health services administrative data, we developed a cohort of cancer survivors from which we could determine demographic characteristics, where follow-up care was received, and concordance with guideline-recommended surveillance testing. Methods: Individuals were included in the cumulative survivor cohort if they had at least one diagnosed incident malignant cancer from 1964 to 2017 in the OCR. Patients were considered survivors upon completion of treatment (surgery, chemotherapy, radiation therapy). Treatment was ascertained from clinical and administrative data using a data-driven approach combined with clinical expert input. In the absence of recurrence data, a treatment-based proxy was developed. Stage IV and complex malignant haematology cancer patients were excluded. We did a cross-sectional analysis of survivors in the cohort in 2016. We produced descriptive statistics and also determined the year of survivorship. For those who were in their first to fifth year of survival, we calculated the proportion who saw a medical or radiation oncologist (MO/RO) in 2016 stratified by year of survivorship. Results: As of December 31, 2016, there were 414,134 cancer survivors in the cohort, roughly 3% of the Ontario population. Ninety-three percent of survivors had a single primary cancer diagnosis, 66% were aged 65 or older, and slightly more were female (55%). Also, 22% had been diagnosed with breast cancer, 22% with prostate, and 12% with colorectal cancer. For those in their first year of survivorship, roughly 50% saw a MO/RO; whereas, for those in their fifth year of survival, 36% had seen a MO and 27% had seen an RO. Conclusions: The development of a cancer survivor cohort has enabled us to produce timely data on a previously unidentified patient population. Linking this cohort with existing administrative data will enable further examination of visit trajectories as well as cancer and non-cancer health outcomes.
A new mixed methods approach to uncover multi-level barriers and facilitators of cancer survivorship.
Authors: Kieber-Emmons Autumn , Crabtree Benjamin F , Miller William
Published: May 2018

36

Background: As healthcare becomes increasingly complex, research needs to take into account multi-level interactions that contribute to public health issues. One such area ripe for multi-level investigation is cancer survivorship care, illuminated in the 2006 Lost in Transition Institute of Medicine report on cancer survivors. We have developed a novel method that aims to understand barriers and facilitators of cancer survivorship from multiple levels, including community factors, medical system features, and policy and environmental influences. Methods: Our method, focused Rapid Assessment Process (fRAP), utilizes mixed methods at multiple levels to better understand cancer survivorship care with a primary care lens. fRAP begins with Geographic Information Systems (GIS) to map variables relevant to cancer survivorship care, such as cancer mortality rates, insurance coverage, and oncology and primary care provider sites. Qualitative participant observation and semi-structured interviews of informants from each level are then undertaken to better understand how cancer survivorship care is delivered within a county or census tract. Lastly, modifiable contextual factors from all levels are identified, as potential future environmental policy change targets. Results: As a development and pilot of our novel fRAP, we have designed, tested, revised and retested our methods over the last 3 years within the framework of two national grant-funded studies on cancer survivorship in primary care. Preliminary modifiable factors of interest affecting cancer survivorship care have been identified for future dissemination. The newest and current iteration of our methods has focused on utilizing GIS specifically to identify hot spots of cervical cancer mortality disparities in order to provide the richest contextual environment for subsequent qualitative inquiry into survivorship care. Conclusions: fRAP is a novel mixed method that has potential to identify modifiable barriers and facilitators of high-quality cancer survivorship care nationally, and may aid in policy improvements in health and healthcare delivery for survivors.
A centralized, primary care medical home survivorship model at the GW Cancer Center.
Authors: Hatcher Elizabeth , Walcott Farzana L. , Ha Cam , Barbour April
Published: May 2018

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Background: Models for survivorship care are often oncology-based. George Washington (GW) Adult Cancer Survivorship Clinic (ACS) has developed a unique, centralized model for survivorship care delivery staffed by internal medicine providers. The objective is to provide care to survivors that encompass the broad array of chronic issues they face, in addition to guidance on cancer surveillance and prevention. Methods: We implemented a centralized, primary care, consultative model of survivorship care, emphasizing care coordination. A personalized, evidence based survivorship care plan (SCP) is provided to each patient. Patients with complex needs may be seen for follow-up. A copy of the SCP is sent to the patient’s primary care provider (PCP). Referrals are made to our network of specialists within the GW system including: cardiology, neurology, weight management, genetic counseling, dermatology, physical therapy, integrative medicine, psycho-oncology, sexual health, and oncofertility. Referrals are tracked to specialty services using the electronic medical record (EMR). Results: Based on preliminary data, from January 2016 to October 2017, 261 cancer survivors were seen in the survivorship clinic. The majority were breast cancer survivors (166). Referral records were available for 225 patients. Most common were dermatology for baseline skin cancer screening (28%), physical therapy (16%), social work and psycho-oncology (15%), and weight management (15%). Conclusions: Our clinic is based on a primary care medical home model for each survivor, which includes care coordination and referral to specialty services. Limitations include inconsistent referral tracking methods with our EMR and incomplete data for all survivorship patients. Future research plans include assessing the impact of referrals on patient-reported outcomes and morbidity.
Improving service delivery to cancer survivors in primary care settings project.
Authors: Foxhall Lewis E.
Published: May 2018

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Background: An estimated 14 million cancer survivors live in the U.S., with up to 18 million expected by 2020. Methods: We established a partnership with three Texas family medicine training programs to provide interactive educational sessions focused on survivors’ needs for primary prevention and lifestyle counseling, surveillance and screening, and prevention of psychosocial and long-term effects. Surveys assessing resident and PCP knowledge, self-efficacy, and practices regarding survivorship care management were administered through REDCap in July 2016 and 2017. Results: Baseline response rates were 64% (60/94) and 59% (55/93) at follow-up. Compared to baseline, providers at follow-up were significantly more likely to report being “very confident” in their knowledge about: appropriate surveillance to detect recurrent breast cancer (5% vs 24%; p = 0.01); long-term physical effects of colon cancer and its treatment (8% vs 18%; p = 0.04); potential adverse psychosocial outcomes of colon cancer treatment (24% vs 44%; p = 0.01); appropriate screening for new primary breast (29% vs 61%; p < 0.001) and colon cancers (27% vs 51%; p = 0.01); and preventive lifestyle/behavioral counseling for breast (39% vs 59%; p = 0.03) and colon cancers (37% vs 59%; p = 0.01). Participants were also more likely to “strongly agree” that they have the skills necessary to: provide follow-up care related to the colon cancer and its treatment (10% vs 28%; p = 0.02); initiate appropriate screening for other new primary cancers for breast (28% vs 56%; p < 0.01) and colon cancer survivors (28% vs 58%; p < 0.01); and conduct lifestyle/behavioral counseling to prevent cancer for breast (33% vs 53%; p = 0.03) and colon cancer survivors (34% vs 55%; p = 0.02). Conclusions: Preliminary results suggest our project has improved provider knowledge, self-efficacy, and practices regarding survivorship care management, with the highest levels in areas pertaining to screening and prevention. We aim to continue this trajectory of improvement in subsequent project years and disseminate the project to other primary care training sites in Texas and beyond.
Implementation of survivorship care plans in the pediatric oncology clinic.
Authors: Smith Christine Moore , Patterson Barron L. , Friedman Debra L.
Published: May 2018

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Background: Quality survivorship care and follow up have been well described in the pediatric oncology population to improve overall health of cancer survivors. Typically, a key component is the delivery of a survivorship care plan (SCP) in a dedicated survivorship program. Creation of an SCP in the immediate post-treatment period has not been commonly adopted. To address the Commission on Cancer's (CoC) requirement to provide SCPs within six months of ending therapy, our pediatric oncology clinic has used quality improvement (QI) methods to incorporate SCPs into clinic workflow with subsequent survivorship program referral. Our aim is to meet the CoC’s benchmark of 50% of eligible patients receiving SCPs by December 31, 2017. Our secondary goal is to improve the timeliness of delivery to patients, families, and primary care providers (PCP). Methods: Registry data from our cancer center was utilized to identify eligible patients. Upcoming appointments were then identified for a panel of eligible patients using the electronic medical record (EMR). Providers use a standardized SCP template which includes the components required by the CoC. The SCP is then reviewed with families, electronically sent to the PCP, and saved in the EMR. Evaluation of the process included subjective feedback from providers and Plan-Do-Study-Act cycles. Based on this feedback and cycles, iterations of the template have been progressively streamlined and the EMR panel has been updated. Results: Care plan creation and delivery is ongoing. At baseline, 28% of eligible patients had SCPs previously created in the survivorship program. After implementation of our QI methods, to date, we have increased the proportion of eligible patients with an SCP to 40.3%, approaching our goal of 50% by December 31, 2017. We have also decreased the time from end of therapy to delivery of a care plan from 22.9 months to 14 months. This is expected to further improve as the process continues. Conclusions: The QI process has been successful in implementing a new standard of care for delivery of SCPs. Ongoing use of QI methods will increase compliance with the CoC standards and result in improved survivorship care.
A survey of colorectal cancer (CRC) survivorship practices in Ireland, and implementation of a survivorship care plan (SCP) pilot program.
Authors: Keane Fergus , Greally Megan , Power Derek Gerard , Leonard Gregory D.
Published: May 2018

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Background: Due to rising incidence and improved outcomes the number of CRC survivors in Ireland is approaching 20,000, and this figure is climbing. It is now recognized by leading organizations such as ASCO and NCCN, that survivorship is a distinct phase along the cancer care continuum and that supporting patients throughout their survivorship is vital. We aimed to assess the variability in surveillance practices in Ireland, and pilot the use of SCPs in CRC patients. Methods: A two phase approach was taken to complete this study. Firstly an online survey was issued to medical oncologists treating CRC in the 8 designated regional cancer centres in Ireland. This comprised 10 questions addressing surveillance practices and use of guidelines. We subsequently piloted the SCP in a cohort of our CRC patients, and followed up with a questionnaire assessing patient views. Results: The online survey was completed by 13 medical oncologists, comprising the lead treating physicians for the Irish regional cancer centres and their satellite centres. Routine surveillance of CRC is practiced by 77% (n = 10). Of those who practice follow up, 90% (n = 9) do so for 5 years. Guidelines for follow up are utilized by 77% (n = 10). The most commonly used guideline is NCCN, by 60% (n = 6). 91.6% think that the SCP is useful in enabling alternative methods of follow up and 69.2% think that nurse-led surveillance clinics should be introduced. 16 patients responded to the follow up survey. 81% (n = 13) felt the SCP was useful, and 81% (n = 13) also believed it reduced anxiety around their diagnosis. 88% (n = 14) reported that the SCP helped them feel in control of their follow up. 69% of patients (n = 11) felt the SCP aided communication and coordination of their care. Conclusions: Surveillance practices in Ireland are heterogeneous. Which guidelines are used to follow patients is physician and hospital dependent. The SCP is a useful tool for streamlining follow up practices so that they are more uniform. Physicians and patients both feel that SCPs are beneficial. Widespread use of SCPs may provide a mechanism to move CRC surveillance out of busy oncology clinics to a more appropriate setting, such as nurse-led clinics and primary care.
Survivorship care planning in gynecologic oncology: Perspectives from patients, caregivers, and health care providers.
Authors: de Rooij Belle Hadewijch , Hagan Teresa , Post Kathryn E. , Flanagan Jane M. , Peppercorn Jeffrey M. , Dizon Don S.
Published: May 2018

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Background: More than a decade after the widespread recommendation of survivorship care plans (SCPs), evidence-based content and processes for providing survivorship care planning in gynecologic oncology remain undefined. This qualitative study sought to characterize the challenges experienced in care after treatment of gynecological cancer and preferences for survivorship care planning among patients, their caregivers and health care providers. Methods: Between July and August 2017, in-depth semi-structured interviews were conducted at a large academic hospital in the United States among patients that recently ended treatment ( < 12 months) of a gynecological cancer (ovarian, endometrial, cervical and vulvar), their caregivers, and health care providers (oncologists, nurses and fellows). Main themes were identified using descriptive content analysis. Results: A total of 30 individuals participated in this study (13 patients, 9 caregivers, 8 health care providers). The vast majority of patients and caregivers (91%) expressed satisfaction for survivorship care, although all reported that remaining needs and ongoing issues remained unaddressed (i.e. distressing symptoms and mood). Almost all (95%) reported a desire for more information on how to address these needs, including issues related to side effects (59%), follow-up planning (32%), and psychological assistance (23%). Preferences for survivorship care planning differed across individuals, with respect to content, timing, and mode of delivery. Some patients did not want a SCP at all (14%). Health care providers expressed that they 1) experience challenges in communicating with patients about survivorship, 2) want to shift the focus to improving quality of life as opposed to focusing on likely disease recurrence, 3) do not currently provide formal SCPs, 4) want disease specific and tailored SCPs to support their survivorship care. Conclusions: Patients, caregivers and health care providers express a need for resources to support survivorship care in gynecologic oncology. The variation of disease types and patient and caregiver needs in this field requires multi-faceted, tailored survivorship care planning.
Survivorship care plans: Implementation in an academic medical center.
Authors: Le Hien , Cadorette Matthew M , Decaneas William M , Kaplan Irving D. , Houliahn Mary Jane , Zerillo Jessica A.
Published: May 2018

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Background: There are more than 14 million cancer survivors in the US. The Commission on Cancer requires survivorship care plans (SCPs) for patients with Stages I-III cancer. We developed a centralized process to create and monitor SCPs at an academic medical center. Methods: Tumor registry (TR) and clinical decision support teams built an SCP report to identify patients with stage I-III malignancies diagnosed within the past year (18 months for breast cancer patients on hormonal therapy) with a future appointment with medical, radiation or surgical oncology. The TR runs this report to identify patients nine-months post-diagnosis and then e-mails providers a draft SCP two days prior to the appointment. The provider edits this SCP and creates a note linked to the problem list item “Cancer Survivorship,” which is captured as a field in the SCP report. The SCP is mailed to the PCP and handed to the patient. If the SCP is not completed, the TR will send a reminder to the clinician. Results: From September to October 2017, 77 potential cases were reviewed by the TR and 25 (32%) were excluded because of active treatment (9), treatment with palliative intent (5), recurrence (8), and treatment by an outside provider (1). Of the 53 SCP’s e-mailed to providers, 12 were completed and 11 were excluded for active treatment (3), treatment with palliative intent (1), recurrence (3), missed/cancelled appointment (2), SCP sent to provider not providing treatment (1) and inability to discuss SCP with patient (1). An additional five had SCPs completed but were not in the electronic medical record. The overall completion rate of SCPs on eligible patients was 17/42 (40%). SCPs were completed in melanoma, breast, stomach, colon, and prostate cancers by medical, surgical, and radiation oncologists. Conclusions: At an academic medical center, we centrally implemented SCPs across a variety of disease types by a variety of providers. SCPs were completed without the need for additional visits, providers or workspace. Screening patients for eligibility before sending SCPs was vital as many were ineligible. Resources including 20% of a tumor registrar’s time, disease-group level buy-in and leadership support were vital.
The impact of age in the quality of life of patients diagnosed with breast cancer after curative treatment.
Authors: Matutino Adriana Reis Brandao , Lewis Jacqueline E , Verma Sunil , Taylor Ardythe , Huber Sylvia , Chen Guanmin
Published: May 2018

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Background: Breast cancer is increasing incidence and decreasing in mortality, leading to a higher prevalence of survivors who face the consequences of the disease and its treatment. The needs of pts in different age groups may be unique. Methods: Retrospective cross-sectional analyses were performed on pts with stages 0-III breast cancer seen at Breast Cancer Supportive Care Foundation in Calgary, Canada, 2008-2016. Descriptive statistics summarized demographics. QoL data were collected using an adapted QoL Scale/Breast Cancer Patient questionnaire measuring physical, emotional, social and spiritual factors. ANOVA tested association between demographics and QoL scores. Results: 490 pts were included. Ages at diagnosis were < 40y (14.9%), 40-49y (34.2%), 50-59y (34.2%) and ≥60y (16.7%). Most pts had invasive disease (89.4%). 60% had breast conserving surgery, 45.3% mastectomy, 65.1% chemotherapy, 58% radiation therapy, 72% anti-hormonal therapy and 13.8% trastuzumab. Physical well-being: < 40y pts had less pain than others (p < 0.049). Emotional well-being: ≥60y pts reported better coping despite disease (p < 0.017), less ongoing anxiety (p < 0.02) and less stress due to changes in appearance (p < 0.006) or self-concept (p < 0.007) than others; ≥60y expressed more control in their lives (p < 0.03) than others; compared to ≥60y, < 40y pts felt less satisfied in life (p < 0.005), less supported (p < 0.02), more fearful of recurrence (p < 0.02) and second cancer (p < 0.005), more depressed (p < 0.02) and more distressed upon completion of curative treatment (p < 0.0002). Social well-being: < 49y pts had higher levels of employment interference than ≥50y pts (p < 0.002); < 40y pts felt more isolated than others (p < 0.05); < 49y pts had higher financial burden than ≥50y pts (p < 0.02); ≥60y pts had less concerns with sexuality than others (p < 0.004). Spiritual well-being: ≥60y pts participated more in religious activities (p < 0.04) and felt more hopeful (p < 0.02) than 50-59y pts. Conclusions: Different age groups have specific needs after breast cancer curative therapy. Ongoing research in survivorship care is essential to develop appropriate programs that promote comprehensive support for pts and families.
Survivorship care plans in safety net: Bridging the barriers.
Authors: Dixit Niharika , Wong Piera , McBride Robin , Hernandez Ditas , Cicerelli Barbara
Published: May 2018

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Background: Survivorship care plans (SCPs) are considered an important tool in survivorship care. SCP should include treatment summaries and follow up care plans and are intended to improve survivorship care. Despite the institute of medicine (IOM) recommendation regarding SCPs, the uptake has been low in community cancer centers. The safety net hospitals face additional challenges to SCPs including patient who may have low health literacy and limited English proficiency. In addition, resources and personnel constraints can be important barriers for implementation of SCPs. Methods: Zuckerberg San Francisco General Hospital is a safety net hospital in the City and County of San Francisco. We created SCPs for breast cancer survivors, as it is our largest group of cancer survivors. Patients, who were within 5 years of completion of treatment with curative intent for breast cancer were candidates for receiving SCPs. We used ASCO survivorship template to create a survivorship care plan. ASCO breast cancer SCP was discussed in the focus groups and modified to match the needs of our patients. SCP committee and patient advisory board evaluated the SCP prior to a pilot of the SCPs in the clinic. We piloted the SCPs initially in English and Spanish to assess feedback from clinic providers. After requested modifications SCP was then translated in to simplified Chinese. The SCP delivery was embedded in the clinic flow and was done at time of routine clinic visit to reduce the burden of additional visits. Results: 104/175 eligible patients have already received the SCP over one year period. All providers in the clinic participated in delivery of SCPs. Conclusions: SCP in multiple languages can be implemented successfully in safety net setting in a patient population with low health literacy and limited English proficiency. Availability in multiple languages, provider buy–in and embedding SCPs in clinic flow appears to be important factors in implementation. We are evaluating the optimal process of SCP delivery with an ongoing randomized pilot study of SCPs with and without navigation with breast cancer related quality of life and self-efficacy measures. We are also evaluating the usefulness of SCPs in meeting the informational needs of primary care providers.
Facilitating patient communication through understanding their social media use: A comparison by age groups.
Authors: Kassirian Shayan , Eng Lawson , Paulo Chelsea , Geist Ilana , Magony Alexander , Smith Elliot Charles , Liang Mindy , Yang Dongyang , Jones Jennifer M. , Alibhai Shabbir M.H. , Bender Jackie , Brown M. Catherine , Xu Wei , Gupta Abha A. , Liu Geoffrey
Published: May 2018

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Background: Social media and internet is increasingly used by patients for cancer education, which can affect provider-patient communication. Usage habits of the adolescent-young adult (AYA; aged < 40 years), adult (age 40- < 65 years), and geriatric cancer populations (age 65+ years) are likely different. Methods: Using age-specific sampling, cancer patients across all disease sites cross-sectionally were asked to complete a survey of demographics, health status, and social media/online resource use for cancer education. Clinical information was abstracted. Results: Of 429 approached, 320 participated (126 AYA, 128 adults, 66 elderly). Males comprised 44%; 72% had post-secondary education; 31% had household incomes of > $100,000. Elderly patients were most likely to refuse participation (33% of elderly approached vs 16% AYA; p < 0.001), with the most common reason being "I do not use internet resources/don't plan on using them"(96% of all elderly refusals with available data). Among respondents, the proportion who utilized the internet for cancer education was 76%, 76% and 70% in AYA, adults, and elderly, respectively (p > 0.5). The use of social media tools in respondents was 49%, 40%, and 36%, respectively (p = 0.16 across age groups). While 75% of patients felt they could judge the quality of cancer-related information on the internet (no differences by age group, p > 0.5), a significantly lower 43% (p < 0.001) felt similarly confident to judge the quality of social media; AYA patients (49%) were numerically more likely to feel confident than seniors (36%; p = 0.16). Elderly were less likely to want online health record access (p = 0.015), treatment option (p = 0.042) and side effect education (p < 0.001), future care plan (p < 0.001) and wellness programs compared to others (p < 0.001). Conclusions: Although cancer patients used social media frequently, confidence is lacking on the quality of cancer information obtained (across all age groups), while elderly perceive fewer benefits of using online/social media related to their cancer. Guidelines for patients on how to assess quality and appropriately use social media could help facilitate patient-provider communication.
Returning to school: Parent preferences, perceptions, and preparedness.
Authors: Ruble Kathy , Pare-Blagoev Juliana , Jacobson Lisa , Martin Allison , Cooper Stacy
Published: May 2018

72

Background: Neurocognitive late-effects (LE) are among the most pervasive complications of childhood cancer and can impact academic success. Successful transition back to school can be challenging and requires parents to be knowledgeable of potential LE and procedures necessary to secure support services. It can be unclear which oncology provider has responsibility for ensuring parents have such knowledge. Further, little is known about parent preferences, perceptions, or preparedness regarding neurocognitive LE and available supports. Methods: As part of a PCORI-funded engagement award, an online parent survey was developed and disseminated about neurocognitive LE and school-related challenges after treatment. Survey items were informed by qualitative analysis of parent interviews and stakeholder input. Parents were recruited nationally via stakeholder social media, and foundation emails and websites. Results: Of the 202 parents responding, 53% reported receiving information on possible treatment related cognitive or school problems from their healthcare team, while 55% reported needing to seek information independently. Information was most often provided by the oncologist (32%), nurse/social worker (26%), or psychologist/neuropsychologist (17%). Parent preferences for topics included information on learning difficulties, physical/health problems that could impact school, and resources for neurocognitive LE. Approximately half (55%) thought their healthcare team understood the issues facing survivors returning to school, although 47% reported that the team did not inquire about school issues or only asked general questions during follow up visits. A large proportion of parents (49%) reported feeling generally underprepared for their childs return to school. Additional information on parent preferences as well as implications for program development, advocacy, and transition procedures will be discussed. Conclusions: Oncology providers are on the frontline of educating and preparing parents to meet the challenges of childrens return to school after childhood cancer. Improved multidisciplinary services and coordination of care to ensure successful transition back to school are needed.
Trust in neuroendocrine tumors: The importance of communication in rare and chronic malignancies.
Authors: Mou Eric , Wittenberg Theresa A. , Kunz Pamela L. , Schapira Lidia
Published: May 2018

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Background: Trust is an integral component of the physician-patient relationship, and its importance is magnified in oncology. In patients with uncommon cancers, aspects pertaining to the rarity of their diagnosis may further influence their inclination towards and perception of trust. We sought to delineate the existing literature landscape of trust in oncology and explore the meaning of trust for patients living with neuroendocrine tumors (NETs), a comparatively rare and chronic malignancy. Methods: We performed a MEDLINE search including combinations of the MeSH headings ‘trust’ and ‘neoplasms’, categorizing articles according to recurrent themes. These themes were then presented to a Northern California NET support group, followed by a discussion. Discussants’ narratives and lived experiences were evaluated with those captured by the current literature to assess areas of concordance as well as to identify areas in need of further study. Results: 355 articles were reviewed, of which 40 articles were included for analysis. Frequently cited factors contributing to measures of trust consisted of race discordance, empathic physician communication, and healthcare systems dynamics. Medical mistrust was associated with poorer cancer screening compliance, reduced adherence to therapy recommendations, and decreased quality of life. Support group participants’ perspectives affirmed these conclusions, adding the lack of medical community awareness of NETs as the major barrier to communicating with their physicians about symptom recognition and shared decision making. Conclusions: Trust in oncology is determined by factors related to patients, physicians, and the healthcare system in which they interact. Medical mistrust is associated with worse measures of cancer surveillance, treatment adherence, and quality of life. Patients with NETs uniquely implicated the insidious and rare nature of their disease, as well as lack of clinician expertise in community settings, in impairing communication with, and therefore, trust in their physicians. Efforts to improve physician-patient communication in those with rare malignancies are needed in order strengthen trust and optimize their care.
Using effective web-based tools to address cancer health care disparities.
Authors: Panjikaran Lloyd Devassy , Mathew Aju
Published: May 2018

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Background: Most of the World’s cancer patients live in non-English speaking world. However, there is a lack of authentic web-based cancer informational tools in non-English language, especially in low and middle-income countries. With increasing access to internet, there is an emergent need to democratize health information in native languages. The senior author was sensitive to this unmet need and created a comprehensive cancer website in Malayalam, a language spoken by more than 35 million people (www.keralacancercare.com). We describe the steps in creating the web resource and provide data on its use across various web and social media platforms. Methods: The senior author produced educational video sessions and cancer literature in Malayalam language. The website had three main sections – cancer basics, cancer A-Z and cancer FAQs. Cancer basics section contained sections on various basic cancer information such as types of malignancies, definitions, staging, symptoms, risk factors, diagnostic tests and screening. It also included sections on various treatment modalities, treatment side effects and information on cancer risk reduction, genetics and prevention. Cancer A-Z section contained instructional videos on major cancers. Cancer FAQs addressed common cancer myths and questions. A social media profile along with contact information through email service was also launched. The total cost incurred for development of such a web-based tool with presence on social media was less than USD 1500. Results: Since the launch of the web resource in May 2017, the website has now been accessed by more than 5000 unique visitors from 84 countries. More than 50 cancer related questions have been addressed since the launch. The web views of some of the brief informational videos such as ‘how to reduce risk for cancer’ has been viewed more than 150,000 times in social media pages. Conclusions: Creating authentic cancer informational web-based tools will have an immediate impact on addressing cancer healthcare disparities around the world. National and regional cancer societies must foster and encourage creation of novel healthcare informational tools that can truly democratize and empower people.
Primary care provider-reported participation in breast cancer treatment decision making.
Authors: Wallner Lauren P. , Li Yun , McLeod Chandler , Radhakrishnan Archana , Hawley Sarah T. , Katz Steven J.
Published: May 2018

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Background: Surgical treatment decisions for early-stage breast cancer patients are complex and often involve discussions with multiple oncology providers. However, with the increasing adoption of team-based cancer care models, it remains unknown to what extent primary care providers (PCPs) are participating in breast cancer treatment decisions and whether they feel they have enough knowledge to participate in these decisions effectively. Methods: A stratified random sample of PCPs identified by newly diagnosed early-stage breast cancer patients who participated in iCanCare Study (Georgia and Los Angeles SEER registries) were surveyed about their experiences caring for cancer patients (N = 519, 58% current response rate). PCPs were asked how frequently they discussed which surgery a patient should have, how comfortable they were with these discussions, whether they had the necessary knowledge to participate in treatment decision making and their confidence in their ability to help with treatment decision making (5-item likert-type scales). The individual items were then categorized as somewhat/often/always vs. never/rarely for analyses. Results: In this preliminary sample, 62% of PCPs were not comfortable having a discussion about surgery options with a patient newly diagnosed with breast cancer, 41% did not feel that they had the necessary knowledge to participate in treatment decision-making, and 34% were not confident in the ability to help with treatment decision-making. One third (32%) of PCPs reported discussing surgical treatment options with their newly diagnosed breast cancer patients, but 22% of these PCPs also reported that they were not comfortable having these discussions and 16% reported they did not have necessary knowledge to participate in decision-making. Conclusions: A minority of PCPs participate in breast cancer treatment decision-making and there are notable gaps in their self-reported knowledge about decision-making and confidence in their ability to help with these decisions. Efforts to increase PCP knowledge about the specifics of cancer treatments may be warranted, but further research is needed to assess the impact of PCP participation on treatment decision-making outcomes.
Geriatric communication skills training: Shared decision making and care planning for the older cancer patient and the caregiver.
Authors: Manna Ruth , Banerjee Smita C. , Shen Megan Johnson , Korc-Grodzicki Beatriz , Alici Yesne , Gangai Natalie , Alexander Koshy , Holland Jimmie , Parker Patricia A. , Nelson Christian J
Published: May 2018

80

Background: Medical decision-making is the process of shared understanding of a patient’s personal values and subsequent negotiation to reach a treatment decision. Discussing options and engaging patients in decision-making remains a challenge for many clinicians. The challenge is greater when treating older patients, who may be cognitively impaired, and may have family members or caregivers playing significant roles in their care. The geriatric communication skills training (CST) guides clinicians in effectively communicating with older cancer patients and their caregivers around pivotal cancer care decisions. Methods: A multidisciplinary team from a Comprehensive Cancer Center collaborated on the development of a one-day training program, consisting of three geriatric specific CST modules: Geriatrics 101, Cognitive Syndromes and Shared Decision Making. Each module included a brief didactic (30 min) with exemplary videos, followed by experiential role play (90 min) with standardized patients (SP), co-led by multi-disciplinary facilitators. These sessions were video recorded to enable reflective learning, group discussion, and feedback. We examined preliminary efficacy of the intervention on multiple outcomes, including participant course evaluations, self-efficacy and coded SP assessments. Results: 28 clinicians, including mental health professionals, oncologists, family practitioners, physician assistants, nurse practitioners, and social workers participated in the training. All participants reported strong satisfaction results with the workshop. Self-efficacy ratings increased significantly across all three modules, t(21) = -4.58, p < .001 between pre-training (M = 3.39, SD = .66) and post-training (M = 4.13, SD = .59). In SP assessments, participants also demonstrated significant uptake of agenda setting skills and increased responsiveness to caregiver concerns from pre to post training. Conclusions: The geriatric CST program was well received and demonstrated improvements in knowledge. Interdisciplinary training groups present for excellent case discussion and modeling opportunities for a variety of communication challenges.
Survivorship Care: What does it take? The experience at Sylvester Comprehensive Cancer Center (SCCC), University of Miami Health Systerm (UHEALTH).
Authors: Vazquez Adrienne Marie , MacIntyre Jessica
Published: May 2018

82

Background: SCCC faces obstacles similar to programs challenged with the development of a cancer survivorship program. Informatics is one of the major limiting resources in continuing to improve and move the survivorship program forward at a large academic institution. An electronic order referral system is pivotal for success. Sylvester at UHEALTH has 7 campuses spread out over 60 miles in a heavily populated area of South Florida. UHEALTH developed a workflow that allowed providers to enter order referrals for identified patients. Methods: At UHEALTH, within EPIC, patients (PTS) have order referrals placed for their needs. The scheduling department contacts PTS to arrange their appointments. With the assistance of our EPIC team and oncology scheduling service, we developed a survivorship order referral. Its purpose was to streamline the process from identification of appropriate PTS, entering order referral and then scheduling PTS into open templates throughout the institution. This order referral is a useful tool within the electronic health record that assists in tracking and scheduling PTS for the survivorship clinic visit type created. The centralized survivorship clinic established itself at the same time the order referral pilot started. Results: UHEALTH piloted the order referral at main campus and 1 of our 6 satellite locations. The pilot showed that from the period of January 2017 - June 2017, providers referred 142 PTS to a survivorship clinic. PTS had the right to refuse the Survivorship visit, but it was important to offer the clinic and explain its purpose. After a successful 6-month period, we expanded the order referral to include three other satellite locations. Conclusions: It is our recommendation to other institutions who use EPIC to create an ambulatory order referral process for referring and scheduling identified PTS to a survivorship clinic. An EPIC order referral increases PTS referrals to survivorship. Institution specific analytics are tracked through order referrals placed and survivorship visit type appointments made. Further research is necessary to understand reasons for PTS refusing or cancelling survivorship appointments.
Delivery of survivorship care from rural primary care and oncology practices.
Authors: Klemp Jennifer R. , Lowry Becky N. , Johnston Judy A , Alsman Kyla , Peereboom Danielle , Long Trish , Krigel Susan , Krebill Hope , Greiner Allen
Published: May 2018

85

Background: While evidence-based guidelines for survivorship care exist, implementation in oncology and primary care practices has fallen short. There is little evidence of the barriers preventing successful implementation in rural primary care and oncology practices. We sought to assess knowledge gaps and barriers to successful implementation of evidence-based survivorship care guidelines in rural Kansas practices. Methods: Midwest Cancer Alliance, outreach arm of the University of Kansas Cancer Center, and Kansas Patients and Providers Engaged in Prevention Research, completed interviews in rural primary care and oncology practices. Results: Primary Care (n=7) and Oncology Practices (n=4): Interviews with primary care physicians, medical oncologists, advanced practice providers, nurses, tumor registrar, outreach coordinator, and office management & staff. Conclusions: Rural primary care and oncology practices experienced barriers to delivering survivorship care including: educational gaps, communication of history, treatment, and recommendations, EHR integration, and lack of resources. Next steps focus on a unified approach to state-wide survivorship education of patients, primary care and oncology practices. [Table: see text]