bluuebunny/crossref_metadata_2025_split huggingface dataset:
Successful implementation of a disease-specific survivorship program for men with prostate cancer (PC) and their partners.
Authors: Higano Celestia S. , Pollock Phil , Wassersug Richard J , Zarowski Christine , Dayan Marcy , Weller Sarah , Van Patten Cheri , Elliott Stacy , Sundar Monita , Mahovlich Sarah , Wibowo Erik , Gleave Martin , Black Peter C. , So Alan , Goldenberg Larry 
Published: February 2017

31 Background: Treatment for localized PC can adversely impact the quality of life for the patient (pts) and his partner. Addition of androgen deprivation therapy (ADT) to treat biochemical relapse or metastatic disease can result in further symptoms. We hypothesized that PC pts and partners would benefit from a clinical, educational, research-based approach to care that would focus on their specific needs. Methods: Funding from government agencies and philanthropic sources were used to establish a survivorship program in the urology clinic at the Vancouver Prostate Centre. A multi-disciplinary management team was formed to oversee the program. The Prostate Cancer Supportive Care (PCSC) Program is organized around 5 thematic modules 1) information about PC and primary treatment options (TX), 2) sexual health and intimacy (SH), 3) lifestyle changes in diet and exercise (DE), 4) managing the side effects of ADT, 5) incontinence and pelvic floor physiotherapy (PT). Group educational sessions (ED) are held 1-2 times monthly. Individual clinic appointments with SH and PT clinicians are also available. A program manager, clinic coordinator, and research assistant run PCSC on a day-to-day basis. Results: PCSC was initiated in January 2013. Urologists, nurses, pharmacists, and radiation oncologists referred patients to PCSC. Of 802 pts who enrolled (167 in 2013, 369 in 2014, and 266 in 2015 to date), to receive the quarterly newsletter, 626 (78%) chose to actively participate in at least one module (summarized in table). Feedback from couples, participating clinicians, and allied health personnel has been overwhelmingly positive. In addition, the PCSC population is proving to be a rich source of patients for research projects and training opportunities for young MDs. Conclusions: The results demonstrate that implementation of a disease specific survivorship program is feasible, well received and has other unanticipated benefits. Outcomes research and intervention protocols are in progress to address our hypothesis. [Table: see text]
Completeness and accuracy of survivorship care plans (SCPs) prepared via two methods: Electronic health record (EHR) auto-population versus manual data entry.
Authors: Tevaarwerk Amye , Zeal Jamie L , Gribble Mindy , Buhr Kevin A , Wiegmann Douglas , Koehn Tamara , Sesto Mary E , Hocking William Gray 
Published: February 2017

62 Background: To improve care for side effects and coordinate follow up, SCPs should correctly and thoroughly report details regarding diagnosis and treatment. However, literature is lacking regarding SCP accuracy and completeness. We audited SCPs for errors and omissions, as part of a clinical trial conducted at two cancer centers. Methods: SCPs were prepared for Stage 0-3 breast cancer patients by 1 of 2 methods, which was based on the standard of care at each center: 1) EHR-based: auto-populated using data entered into the EHR by oncologists for clinical use. SCP finalized by oncologist or advanced practice provider; and 2) Manual entry: prepared by an RN using manual transfer of clinical data into software program. Each participant’s clinical data was abstracted from her chart, with audit and cross-check against each SCP. In the case of discrepancies, oncologists reviewed the chart and adjudicated the “correct” information, as well as completeness and error. Omissions were defined by missing SCP information required per IOM recommendations; errors were defined as data reported in the SCP that did not match the chart. Results: Two sites enrolled 128 women between 11/2013-12/2014; 80 received EHR-based vs 41 manual SCPs. Omissions: 24 (30%) EHR-based versus 6 (15%) manual SCPs contained at least 1 omission. Omissions included failure to provide some dates and specific axillary surgery type (sentinel vs axillary) for EHR-based SCPs and failure to specify receptors for manual SCPs. Errors: 7 (9%) EHR-based versus 19 (46%) manual SCPs contained at least one error. The majority of EHR-based SCP errors were minor discrepancies in dates. Errors in manual SCPs included chemotherapy regimen, incorrect receptors, incorrect stage and axillary surgeries; stage and surgery errors were affected by poor fit with templated SCP fields. Conclusions: Little is known about SCP accuracy and completeness. Manually prepared SCPs may have a higher rate of errors while EHR-based SCPs may have more omissions. Differences in preparation (site, training of preparer) could also account for these differences. In an era of required SCP provision, measures of SCP quality should be considered.
Impact of lymphoma survivorship clinic visit on patient-centered outcomes.
Authors: Thompson Carrie A. , Towns Jessica N , Dripps Laurie , Jenkins Sarah , Lackore Kandace , Yost Kathleen J. , Ristow Kay , Colgan Joseph , Habermann Thomas Matthew , Inwards David James , Johnston Patrick B. , Klebig Robin , Lin Yi , Markovic Svetomir , Micallef Ivana N. M. , Nowakowski Grzegorz S. , Porrata Luis F. , Rosenthal Allison Claire , Witzig Thomas E. , Ansell Stephen Maxted 
Published: February 2017

64 Background: The goals of our Lymphoma Survivorship Clinic (SC) are to coordinate care, educate patients, and create a survivorship care plan (SCP). The aim of this study was to determine if patient-centered outcomes are improved after a SC visit. Methods: From 11/13-5/15, surveys were mailed to recently-treated lymphoma patients who were within 4 weeks of their last visit and in remission. Quality of life (QOL) was measured with PROMIS and distress was measured with the Impact of Events scale. Responses between those who attended SC and those who were eligible but did not attend were analyzed. Results: There were 96 surveys sent to the SC group; 59 were returned (61% response rate). Of the non-SC group, 140 surveys were sent and 84 were returned (60% response rate). Mean age was 57 years (range 23-77) in the SC group and 59 years (23-88) in the non-SC group. There were more females in the SC group (52% vs 30%) but no differences in race, marital status, education, or health literacy. Those who attended the SC were more likely to recall receiving a summary of cancer treatment and recommendations for follow-up care (90% SC vs. 75% non-SC, p = 0.03). Furthermore, SC attendees were more likely to “definitely” recall discussion on improving health or preventing illness (89% vs. 53%), getting help in making changes in habits/lifestyle (76% vs. 50%), diet (80% vs. 31%), and exercise (82% vs. 51%), all p < 0.001. There were no differences in discussions regarding smoking, follow-up testing, and symptom monitoring. The SC group was less likely to need more information regarding sexuality (6% vs 20%, p = 0.045). There were no differences in need for information regarding anxiety, fitness, familial cancer risk, fertility, complementary therapies, and social issues. The SC group was slightly more confident that they could get information or advice related to cancer (completely confident 76% vs. 61%, p = 0.07). There were no differences in QOL or distress. Conclusions: A Lymphoma SC visit increased receipt of SCP and provided more information on survivorship issues, particularly health behaviors, but did not improve QOL or distress. Further study is needed to determine if this leads to long-term health benefits.
Implementing provider and patient initiated survivorship care planning: Lessons from baseline.
Authors: Smith Katherine Clegg , Greco Stephen C , Hannum Susan , Radhakrishnan Archana , Smith Karen L. , Tolbert Elliott , Snyder Claire Frances 
Published: February 2017

65 Background: It is recommended that cancer patients completing treatment receive a Survivorship Care Plan (SCP). Most SCP templates are designed for provider initiation and completion. Barriers to SCP provision include time and resource restrictions in the oncology clinic. Patient-initiated SCPs are one alternative. We conducted a pilot trial describing and comparing implementation of a provider-initiated versus patient-initiated tool. We present clinician and patient baseline data. Methods: We recruited oncologists from two community-based academically affiliated hospitals and conducted qualitative interviews exploring perceptions of patients’ needs and SCP value. To determine feasibility of oncologists identifying patients for an SCP, participating oncologists were to refer adult patients completing active treatment for non-metastatic cancer to the study team. Enrolled patients completed the Cancer Survivors’ Unmet Needs (CaSUN) and Preparing for Life as a New Survivor (PLANS) surveys. Results: Of 58 invited clinicians, 13 agreed to participate, 5 referred patients. Participating clinicians were not currently providing SCPs. Opinions were mixed about SCP value for improving care; most saw value for communication and care coordination. The study team worked with nurses to identify eligible patients, given challenges with identification as part of routine practice. We recruited 41 patients (aged 44-90 years, 68% female, 81% White, 53% reporting excellent or very good health) from 71 approached. At baseline, patients reported an average of 13.8 informational and support needs; 9.3 of which were met and 4.5 were unmet. The most common unmet needs were recurrence concerns (37%), case management to identify services (30%), adjusting to changes in quality of life (22%), and coordination among providers (21%). In terms of understanding follow-up care, 24% reported not feeling prepared for what to expect and not knowing about follow-up tests; 22% reported providers not communicating well with each other. Conclusions: Need exists for robust systems to identify eligible patients. Enrolled patients’ needs were relatively modest, with recurrence concerns and inter-professional coordination being key. Clinical trial information: NCT02405819.
Comparing overall survival (OS) outcomes in patients with newly diagnosed chronic lymphocytic leukemia (CLL) with normal life expectancy.
Authors: Furman Richard R. , Allan John N , Howes Angela J. , Mahler Michelle , Wildgust Mark A. 
Published: February 2017

7 Background: CLL is an orphan hematologic malignancy but also accounts for the most common adult leukemia in the Western Hemisphere, with a median age at diagnosis of 72 years. Median OS for symptomatic, treatment-naïve, elderly patients with CLL is approximately 5.3 years (CLL5; Eichhorst, et al. Blood 2009), whereas the life expectancy of a 72 year old (yo) is around 12 years (US Life Tables, 2006). Ibrutinib, an oral, first-in-class, covalent Bruton’s tyrosine kinase inhibitor, significantly improves OS. Early results from a phase 1/2 study in treatment-naïve elderly patients with CLL (PCYC-1102; median age, 71 years) suggest that single-agent ibrutinib extends OS, with survival at 3 years of approximately 97% (Byrd, et al. Blood 2015). Here we compare the OS in newly diagnosed patients with CLL treated with single-agent ibrutinib or chlorambucil with the normal life expectancy of a 72 yo adult. Methods: OS outcomes for patients treated with chlorambucil from the CLL5 study conducted in Germany (Eichhorst, et al. Blood 2009) were compared with long-term OS results from PCYC-1102 (Byrd, et al. Blood 2015). Life expectancy data were obtained from US Life Tables. Results: Results from CLL5 suggest that single-agent chlorambucil has a median OS of 5.3 years (median age, 71 years), with approximately 75% of patients alive at 3 years. The median OS for ibrutinib has not been reached (median follow-up, 3 years), with an estimated progression-free survival of 96% and OS of 97% at 3 years. Life expectancy for a 72 yo healthy person at 3 years is approximately 95%. Naïve comparisons suggest that single-agent ibrutinib may be altering the natural history of CLL, providing a longer OS versus chlorambucil and a similar OS as expected in a 72 yo in the general population. Conclusions: Treatment outcomes in CLL are fundamentally changing with the advent of new targeted therapies. This indirect naïve comparison between ibrutinib-treated patients and a general population suggests we may be moving from palliative care for elderly patients with CLL to chronic care management. Implications for chronic care management of patients with CLL will be discussed.
Evaluating a clinically and culturally informed survivorship care plan trial for African American breast cancer survivors (AABCS).
Authors: Ashing Kimlin Tan , McDowell Kommah , Brown Shirley , Serrano Mayra , Lai Lily L. , Miller Aria 
Published: February 2017

71 Background: This randomized control study was designed to evaluate the impact of trial participation on access to survivorship care planning (SCP) and adherence to surveillance recommendations among AABCS. Methods: AABCS were recruited from the State Cancer Registry and support groups. This trial consisted of 1:1 randomization into two conditions: 1) peer navigation + clinically- and culturally-informed breast cancer (BC) materials, and 2) clinically- and culturally-informed BC materials, only. AABCS (N= 29) from advocacy groups were trained as peer navigators, with on-going supervision and monitoring by the research team. The ASCO-SCP template was modified based on input from survivor-advocates to increase clinical, cultural and socio-ecological relevance. The study was implemented using community based-participatory approach. Mailed, self-report assessments were taken at baseline and at 6- and 12-month follow-up. Results: In total, 112 AABCS who were 6-18 months post initial primary treatment for stage 0-3 BC participated in the study. There was a 74% participation rate and a 64% completion rate. At 6- and 12-month follow-up, 65% and 73% reported access to a SCP, respectively. Improvements from baseline in adherence to SCP surveillance recommendations were observed at 6- and 12- month follow-up assessments regarding physical exam (45.6%, 71.2%, 71.0%, respectively), pelvic exam (39.7%, 45.2%, 46.5%, respectively), breast self-exam (45.0%, 79.0%, 81.2%, respectively), and breast imaging (31.1%, 75.6%, 81.1%, respectively) (p< 0.05). There we no significant demographic, medical or study outcome differences by study condition. Conclusions: Our study findings demonstrate the effectiveness of trial participation in facilitating access to SCP and improved adherence to recommended surveillance. Participation of survivor-advocates in developing culturally-informed BC informational and survivorship care strategies can enhance acceptability and sustainability, especially in community and primary care settings. Untapped opportunities exist for survivor-advocate engagement in survivorship research and practice to address inequities. Clinical trial information: NCT01824745.
Measuring impact of survivorship care plans on head and neck cancer patients.
Authors: Harr Bridgett Ann , Bodmann Joanna , Koyfman Shlomo A. , Nwizu Tobenna Igweonu , Joshi Nikhil Purushottam , Ives Denise I. , Rahe Melissa L , Hamker Jean F , Adelstein David J. 
Published: February 2017

73 Background: At our institution, patients who have completed treatment for a locoregionally confined head and neck cancer are followed in a multidisciplinary head and neck survivorship clinic initiated by the administration of a formal, patient specific survivorship care plan (SCP). We sought to assess the impact of these SCP visits on patient understanding of their disease, its treatment, and potential late effects and follow up plans. Methods: An IRB approved survey was administered by an uninvolved third party, to an unselected sequential series of head and neck cancer survivorship patients at the time of a regularly scheduled follow up visit. The survey focused on the knowledge recalled from the SCP, and whether this changed over time. We analyzed two cohorts of patients, based on whether the SCP had been given to them within the last 18 months or not. Results: Preliminary results from the first 20 patients surveyed are presented. These patients received their SCP 3-27 months before being surveyed. Primary tumor sites included oropharynx (16) and larynx (4) and most patients had been treated with intensity modulated radiation therapy (19) and concurrent cisplatin (11). Conclusions: Although patients’ recall about receiving a formal SCP appeared to diminish over time, the information provided by this SCP plan and subsequent survivorship visits was retained. Whether this reflected the SCP itself, or the reinforcement of continued close follow up survivorship visits cannot be determined, but merits further investigation. [Table: see text]
The Quality of Survival (QoS): A concept framework to assist communication and decision making about cancer care.
Authors: Fallowfield Lesley , Nadler Eric , Greaney Maire , Gater Adam , Subar Milayna , Orsini Lucinda Strycker , Lyman Gary H. 
Published: February 2017

78 Background: The past decade has seen the development of transitional, novel cancer therapies that lengthen survival, yet data regarding the quality of that survival are limited or unavailable. Improving patient (pt)/healthcare professional (HCP) communication about issues such as QoS might enhance engagement and inform decision-making about future care. For example, the PROACT study (ECC 2015, abs.1715) has shown how little attention is given to family caregiver impact. Our objective is to develop an inclusive framework that will go beyond existing pt-reported outcomes and quality of life (QoL) constructs, and which HCPs may use to communicate with pts. Methods: An electronic database search to investigate the QoS landscape in cancer was conducted and results were articulated into a visual concept map. Subsequently, 20 US pts with metastatic NSCLC were interviewed about their cancer experiences (a similar melanoma pt survey is ongoing) and this input was integrated into the concept map. Areas explored include: symptoms, disease/treatment communication and education, pt expectations about treatment goals and involvement in decision-making, and impacts of all these on pts, families, and friends. Results: In their interviews, pts reported a host of impacts: physical, psychological/emotional, social/relationship, work, and financial. A QoS concept framework was developed to capture the holistic pt experience throughout the continuum of cancer care (during and post treatment) and consisted of 4 interconnected domains: QoL, survival, side effects and economic impact. The severity and persistence of some of the impacts ultimately affect survival, while others affect the ability to preserve or return to normality. Conclusions: While pt experiences are usually discussed and monitored by HCPs, issues identified as most important to pts and families and their variability over time, are rarely assessed formally during survival. These findings support the development of a pt-centric concept map that defines QoS, provides a comprehensive framework for improving communication between pts and their care teams about long-term QoS in cancer, and potentially enables better treatment decisions.
A randomized controlled trial (RCT) of a supportive care package (SurvivorCare, SC) for survivors of colorectal cancer (CRC).
Authors: Jefford Michael , Gough Karla , Drosdowsky Allison , Russell Lahiru , Aranda Sanchia , Butow Phyllis Noemi , Phipps-Nelson Jo , Young Jane , Krishnasamy Meinir , Ugalde Anna , King Dorothy , Strickland Andrew , Franco Michael Edward , Blum Robert helmut , Johnson Catherine , Ganju Vinod , Shapiro Jeremy , Chong Geoffrey , Charlton Julie , Schofield Penelope 
Published: February 2017

79 Background: Colorectal cancer (CRC) and its treatments can cause distressing short and long-term side effects as well as significant functional consequences. Current models of follow-up do not adequately address these issues. We conducted a multi-center RCT of an innovative program (SurvivorCare (SC)); designed to have a beneficial effect on psychological distress, supportive care needs (SCN) and quality of life (QOL). Methods: At the end of active treatment for stage I-III CRC, eligible patients ( =18 years, adequate English) were randomized 1:1 to usual care (UC) or to UC+SC. SC comprised educational materials, needs assessment, an individualized survivorship care plan, nurse-led end-of-treatment session and three follow up (FU) phone calls. Distress (BSI-18), SCN (CaSUN) and QOL (EORTC QLQ-C30, CR29) were assessed at baseline, 2 (FU1) and 6 (FU2) months. Primary hypothesis: SC would have a beneficial effect on distress at FU1. Secondary hypotheses: SC would have a beneficial effect on (1) SCN and QOL at FU1; and (2) distress, SCN and QOL at FU2. 15 items assessed satisfaction with survivorship care. Sample size of 180 (90/arm) was based on 80% power, 2-sided alpha of 0.05, to detect a between groups difference of 3.6 on BSI-18 at FU1. Outcome analysis was ITT. Results: Of 221 patients randomized (111 UC, 110 SC), 4 were ineligible and 1 lost to FU, leaving 110 UC, 106 SC. Groups appeared well balanced. Median age was 64, 52% male, 56% colon, 35% rectal cancer, 10% overlap. Stage I 7%, II 22%, III 71%. Intervention fidelity was acceptable. Baseline distress and QOL were similar to population norms. Between groups differences in distress at FU1 (primary outcome), distress at FU2 and SCN and QOL at FU1 and FU2 were small and non-significant. SC patients were more satisfied with survivorship care than UC patients (significant differences on 10 of 15 items). Conclusions: The addition of SC to UC did not have a beneficial effect on distress, SCN or QOL outcomes but SC patients were more satisfied with survivorship care. Clinical trial information: ACTRN12610000207011.