bluuebunny/crossref_metadata_2025_split huggingface dataset:
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

34 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

45 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

52 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

55 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

60 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

63 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

64 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

67 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.