bluuebunny/crossref_metadata_2025_split huggingface dataset:
Survivorship care plans in safety net: Bridging the barriers.
Authors: Dixit Niharika , Wong Piera , McBride Robin , Hernandez Ditas , Cicerelli Barbara 
Published: May 2018

68 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

71 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

75 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

76 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

78 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]
An assessment of supplement use in breast cancer patients from a single unit in South Africa.
Authors: Kriel Inge , Bergstrom Kyara , Benn Carol 
Published: May 2018

89 Background: Breast cancer patients are particularly susceptible to marketing strategies employed to encourage the use of natural supplements and natural therapies. Supplements/natural therapies are freely available from various sources, including online commercial sites, therefore making them readily accessible and poorly regulated. Methods: An anonymous questionnaire on supplement use was distributed to patients diagnosed with breast cancer. Fifty-one questionnaires were completed and data was collected into a REDCapTM based database and subsequently analysed. Results: Thirty-two patients (62.7%) were using supplements prior to their diagnosis. Thirty-two (62.7%) patients did not think supplements had harmful side effects and thirty (58.8%) patients did not think they could interfere with their cancer treatment. Thirty-five patients (68.6%) would however stop their supplements if they were informed of possible interactions. Thirty-eight (74.5%) patients would prefer if their doctor informed them of potential interactions and side effects. Conclusions: Supplement use is common in breast cancer patients. The majority of patients did not believe that supplements could interfere with conventional breast cancer treatments, but the majority of patients are willing to stop the supplements if they are informed of potential interactions. Patients would prefer their doctor to inform them on supplement use. A further study is warranted to assess doctors’ knowledge around supplement side-effects and interactions.