bluuebunny/crossref_metadata_2025_split huggingface dataset:
SEASONS: A prospective study assessing the physical, psychosocial, spiritual, and financial needs of patients with breast and prostate cancer.
Authors: Ehmke Nancy Jean , Biddle Hilary , Hunnicutt Breck Ann , Trenkner Stephanie 
Published: February 2017

4 Background: Three distinct phases or "seasons" of survival have been described by Mulan (1985) including: acute (time of diagnosis to treatment), extended (intermittent treatment to surveillance), permanent (likelihood of recurrence diminishes). Each season is associated with unique physical, psychosocial, spiritual, financial, and educational needs. ASCO has identified education for survivors and their families as essential in achieving high-quality cancer survivorship care. As cancer centers expand survivorship services beyond the first tier (delivery of care plan) to provide educational programs and support services, it is critical to assess survivors' needs throughout their journey. The purpose of this prospective study is to identify the follow-up preferences and the educational, physical, psychosocial, financial, and spiritual needs of breast and prostate cancer survivors during the seasons of survival. Methods: Breast and prostate cancer patients completed the Pearlman-Mayo Survey at the start of treatment(T1), 4-6 weeks (T2)and 8-16 months(T3)after treatment then annually for four years(T4,T5,T6,T7). A series of paired t-tests determined if differences in needs existed between the various time periods. In addition, the Cronback alpha reliability estimation tool was used. Results: A total of 203 survivors were enrolled. 74 surveys were completed between T1 and T2. First Interim results revealed fatigue, nutrition, and sexual issues were of concern. Identified concerns at T3(n = 83) include fatigue, insomnia, hot flashes, and management of household activities. Depression decreased from T1 to T2 but increased at T3.Although decreased libido was reported at T1, more than 60% of respondents were concerned at T3.Respondants indicated a preference to be followed by nurse practitioner. Conclusions: As planning for the second tier of survivorship care begins at Parkview Comprehensive Cancer, educational and supportive programs on fatigue, nutrition, depression and sexuality will be implemented. Data collection and analysis will continue until participants have been followed for four years.
The University of Pittsburgh CancerCenter Primary Care Provider Workforce Integration Initiative: An institutional model—Design, process, status, and implications.
Authors: Van Londen G J. , Weiskopf Brufsky Jill , Parker Ira Russell 
Published: February 2017

41 Background: Due to increasing numbers of individuals diagnosed with cancer, a burgeoning cohort of cancer survivors with significant medical co-morbidities, and oncology workforce “supply-demand” challenges, the optimal integration of Primary Care Providers (PCPs) into the comprehensive cancer care paradigm is of timely importance. The objective is to describe those specific planning and implementation issues impacting the establishment of a cancer care delivery model targeting the interface between Oncology and Primary Care. Methods: The University of Pittsburgh CancerCenter PCP Workforce Integration Initiative received authorization to proceed in December of 2014. Immediate actions were then undertaken: 1) Establishment of an “Advisory/Working Group” [Fifteen stakeholders representing the interests of Oncology, Patient Advocacy, Nursing, Primary Care (Family Medicine, Geriatric Medicine, Internal Medicine, and Gynecology); Administration, Information Technology, and Research]; 2) Conduct of focus groups and individual, fact-finding conversations; 3) Programmatic planning of a “pilot” intervention; and 4) Planning of a full-day, continuing medical/nursing education symposium focusing upon the specific training and empowerment needs of PCPs with regard to their evolving roles in the comprehensive cancer care paradigm (November/2015). Results: Focus groups demonstrated an overall acknowledgement of the importance of the issue and a willingness to participate. Specific identification of those unique provider roles and competencies necessary to address a patient’s individual “survivorship” risk profile and the development of a system to best enhance communication and information exchange among the providers and patients were made evident. The results of a survey (knowledge, attitudes, beliefs, and practices) conducted to the attendees of the Symposium will be discussed. Conclusions: To best optimize the interface between Oncologists and PCPs with regard to best practices cancer care, well-planned competency training and “system development” will be necessary.
Building an oncology community of practice.
Authors: Willis Anne , Loeffler Deena R. , Pratt-Chapman Mandi 
Published: February 2017

47 Background: Oncology patient-centered outcomes research (PCOR) helps stakeholders, including patients, clinicians and policymakers, make decisions about care; yet, research findings may take years to be put into practice. With the increasing availability of survivorship PCOR, better methods are needed to disseminate and implement findings quickly and effectively. Engaging multiple stakeholders is essential to meet this need, and Communities of Practice (CoP) are effective in increasing collaboration across organizations and stakeholders. Methods: The George Washington University (GW) Cancer Institute created a CoP as a knowledge management approach to break down professional and organizational barriers, support learning for people new to the field and facilitate collaboration within and across organizations. The goal of the CoP is to create stronger links across researchers, healthcare professionals and patients by facilitating the sharing of survivorship information and resources. These linkages will result in enhanced dissemination of evidence-based practices. Results: The CoP is housed within the Generation and Translation of Evidence (GATE) website. The site features user-generated content, including descriptions of research findings and evidence-based interventions to succinctly provide information for a variety of stakeholders to guide decision-making as well as descriptions of best practices and lessons learned to capture practice-based efforts that can drive research. GATE features a question-and-answer bank with evidence-based responses by survivorship experts. The CoP includes Ask the Expert sessions to provide researchers an opportunity to interact with clinicians and patients to guide research dissemination. It also includes Special Interest Groups for researchers to create collaborations and advance research agendas. An e-newsletter highlights new GATE content and opportunities to collaborate. Conclusions: There is a clear need to better disseminate and implement survivorship PCOR evidence to improve cancer care delivery. The GATE website will aid in more rapid implementation of survivorship PCOR evidence into clinical practice and foster collaborative dissemination and implementation efforts.
Survey of cancer survivors' understanding of their cancer care and follow-up plan.
Authors: Imran Farhan Shahzad , Andrews Caroline , Doerner Kathy , Heatherington Brittany , Hodes Susan , Pictor Nancy Mary , Reda-Cheplowtiz Cathy , Santelli Jeanine S , Jamshed Saad 
Published: February 2017

51 Background: The follow up care for cancer survivors is often sidelined due to the lack of well-defined guidelines. A “Survivorship care plan (SCP)” has been proposed to summarize key aspects of the cancer care and the future follow-up plan. Cancer survivors who had not received SCP were surveyed to gauge their understanding of their cancer care. Methods: Patients who had completed cancer therapy with curative intent during a 2 year period (2013-2014) were mailed the survey questionnaire. This questionnaire was designed to test understanding of their diagnosis (stage), care team, symptoms of relapse, surveillance plan, and short and long term side effects of their treatment. The Cancer Center’s medical record database was systematically searched to identify subjects. Microsoft Excel was used to calculate descriptive statistics on the quantitative data and frequency counts for the qualitative data. Results: 161 cancer survivors completed the survey of the total 342 mailed. The majority of these patients had breast (92%) cancer. Other cancer survivors had a diagnosis of lung (6%) and colon (2%) cancer. Only 2% patients did not know their cancer diagnosis. 12% patients did not know the stage of their cancer. 98% patients were able to report their surgeons’ name, however 85% and 89% could not recall their medical and radiation oncologist, respectively. 95% patients recalled discussing their follow-up plan with their provider but only 86% patients knew which test(s) should be performed as part of their cancer surveillance. Only 68% patients accurately listed a few symptoms suggesting cancer recurrence, while 62% survivors correctly listed a few potential long term side-effects of cancer treatment. Conclusions: There are several deficiencies in survivors’ understanding of their cancer care. Further research is needed to assess and compare if these deficits can be improved by a SCP document.
Patient-generated online survivorship care plans for adult survivors of childhood cancer: Feasibility and patient preferences.
Authors: Szalda Dava , Schapira Marilyn M. , Schwartz Lisa , Kim Esther , Vachani Carolyn , Metz James M. , Hill-Kayser Christine E. 
Published: February 2017

54 Background: With improvements in pediatric cancer treatment, the number of childhood cancer survivors is growing rapidly. Survivorship care plans (SCPs) can provide survivors with necessary information and resources to engage in risk-based follow-up care. Online patient motivated SCPs are promising for adult survivors of childhood cancer with multiple care transitions and the need for self-management outside clinical encounters. Methods: An existing online SCP generator (OncoLife) was adapted to create Smart Adult Living After Childhood Cancer plans for survivors of pediatric Acute Lymphoblastic Lymphoma (ALL) and Hodgkin’s Lymphoma (HL) by incorporating Children’s Oncology Group Long Term Follow-Up Guidelines into existing information technology logic. Results: Adult survivors (n = 20) of pediatric ALL or HL, registered to be seen in radiation oncology or survivorship clinic at the University of Pennsylvania, created an online SCP and completed an online survey. Approximately 80% of patients contacted consented and completed SCP indicating high acceptability; two-thirds (66%) completed the survey. Participants were a median of 35.5 years of age and of 26.5 years since diagnosis. They were 50% female, majority Caucasian (90%), 70% ALL and 30% HL survivors. SCPs took an average of 9 minutes 46 seconds to complete. The majority (95%) of respondents found the SCP generator easy to use, would recommend it to others (85%), and were satisfied with the amount of information received (80%). Ninety percent stated they intended to discuss their SCP with a healthcare provider. Only a third (35%) of survivors stated they had previously received a formal SCP. Seventy percent (70%) stated a written or online plan was the best way to convey health information between visits. Preferences for use of online SCP included: 70% wanting a treatment summary to complete their SCP and 50% wanting personal information to be saved for later use. Conclusions: Online patient-motivated SCPs are a feasible and acceptable way to deliver information to adult survivors of pediatric cancer about long term health risks. Further research into optimal methods for creation, use and health benefits of SCPs is warranted.
Use of online survivorship care plans by young adult cancer survivors: Patient characteristics and patient reported outcomes.
Authors: Szalda Dava , Schapira Marilyn M. , Jacobs Linda A. , Vachani Carolyn , Metz James M. , Hill-Kayser Christine E. 
Published: February 2017

55 Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. Methods: Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. Results: YAS (n = 1,445, Mage= 31.5 years) and AS (n = 6301, Mage= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). Conclusions: In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text]
Establishing survivorship care planning in a comprehensive cancer center to meet clinic needs and accreditation standards.
Authors: Kircher Sheetal Mehta , Garcia Sofia M , Oden Megan Rae , Veneruso Aubri , Mckoy June M. , Penedo Frank J. 
Published: February 2017

59 Background: Standard 3.3 of the American College of Surgeons Commission on Cancer (CoC) patient-centered care guidelines requires that accredited institutions deliver SCPs to all patients completing cancer treatment with curative intent (10% of eligible patients in 2015 and increasing incrementally to 100% in 2019). Implementation of SCP delivery has been challenging and limited to date. We describe our implementation process at the Robert H. Lurie Comprehensive Cancer Center. Methods: We established a multidisciplinary working group that developed and administered a survey of providers’ attitudes towards SCPs and preferences for delivery, assessed clinical workflows, then developed and vetted customized SCP templates within the electronic health record (EHR) and two complimentary SCP delivery models. Results: Twelve providers completed the survey (6 physicians, 5 advanced practice providers [APPs], 1 nurse). 67% viewed SCPs as feasible within workflows, 75% felt designated survivorship clinicians were best equipped to deliver SCPs; All reported SCPs were beneficial to patients; and 92% felt SCPs were beneficial to inter-provider communication. Cited barriers were: time and staff required and non-optimal billing. To harmonize with existing workflows, we established two delivery models: (1) clinical groups with a low volume of survivors relative to available nursing staff complete and deliver SCPs themselves; (2) clinical groups with high volumes of survivors relative to available nursing staff refer patients to a centralized survivorship clinic where SCPs are delivered by designated survivorship APPs. All elements of the ASCO templates were incorporated into our EHR templates. We reduced free-text data entry by designing templates where 20% of the fields are auto-populated from existing EHR data and another 65% use drop-down menus. Mean completion time is 12 minutes (range 10-30 minutes; n= 30). Conclusions: CoC-accredited institutions across the nation are working to meet Standard 3.3. We present our experiences developing and implementing SCP delivery models, including lessons learned to inform models of survivorship care under development at other institutions.
A Dutch nationwide survivorship care program for Hodgkin lymphoma survivors.
Authors: Van Leeuwen Flora , Veer Mars van 't , Aleman Berthe M.P. , Dekker Nicky , Raemaekers John M. M. ,   BETER Consortium
Published: February 2017

6 Background: Survivors of Hodgkin lymphoma (HL) are at increased risk of various late adverse effects of treatment, leading to substantial excess morbidity and mortality. Long-term follow-up care programs have been established for childhood cancer survivors, but not yet for HL survivors. The Dutch BETER consortium (Better care after Hodgkin lymphoma: Evaluation of long-term Treatment Effects and screening Recommendations) has developed a nationwide infrastructure for Survivorship Care Clinics for HL survivors. The consortium aims to: 1) establish follow-up guidelines for survivors; 2) identify survivors eligible for follow-up care; 3) educate survivors about late adverse treatment effects; and 4) provide risk-based care. Methods: Evidence-based follow-up guidelines were developed according to international standards. The guideline development group consisted of clinicians, methodological experts and patient representatives. To be eligible for follow-up care patients must have survived ≥ 5 yrs and have been treated at ages 15-70 years after 1969. Survivors were identified through the Netherlands Cancer Registry and hospital-based registries. Tracing of current addresses was done through the nationwide database of Municipal Offices. Results: We developed guidelines forsecond malignancies, cardiovascular disease, thyroid disease, osteoporosis and functional asplenia infection prophylaxis. Recommendations are given for fertility care and therapy for neck muscle weakness. We have identified and traced a cohort of 12,000 HL survivors in 23 centers, covering about 80% of HL patients in the Netherlands, of whom 8,500 appear to be eligible for follow-up care. For all survivors, treatment data were collected from the medical records to provide risk-based screening recommendations. A website and a survivorship care plan were developed to educate survivors about late effects. A nationwide database, including screening and adverse events data, is in development to evaluate the follow-up guidelines for diagnostic value and efficacy. Conclusions: We expect that the BETER project will improve healthy life expectancy of HL survivors. Evaluation of follow-up care will lead to a more evidence-based follow-up program.
Patient and provider preferences: Treatment summary and survivorship care plans after hematopoietic cell transplant.
Authors: Murphy Elizabeth A , Majhail Navneet S. , Baker Kevin Scott , Abetti Beatrice , Jahagirdar Balkrishna N. , Kamani Naynesh , Rizzo J. Douglas , Saber Wael , Salazar Lizette , Schatz Barry , Syrjala Karen Leslie , Wingard John R. , Denzen Ellen M 
Published: February 2017

63 Background: There is a critical need to increase awareness of late complications and recommended preventive care among patients and providers and improve communication about long-term care. During transition back to community, care often becomes fragmented and insufficient to address survivors’ complex medical needs. A survivorship care plan (SCP) was developed using disease and hematopoietic cell transplant (HCT) data submitted to an outcomes registry. A treatment summary incorporates these data and identifies important treatment-related risk factors. The care plan uses these risk factors and long-term follow-up guidelines (Majhail et al, BBMT/BMT 2012) to provide personalized recommendations for preventive care. Study aims were to characterize patient-centered elements that will increase acceptability of the SCP. Methods: Phone focus groups (N = 12) were conducted for: 1) adult allogeneic patients > 1 year post-HCT and their caregivers (3 groups, N = 22); 2) hematology/oncology and primary care physicians/mid-level providers (3 groups, N = 24); 3) HCT providers (2 groups, N = 14); and 4) HCT nurses/social workers (4 groups, N = 17). Transcripts were coded and analyzed for saturation of key themes. Coding reliability and validity were assessed (kappa > .90). Results: Patients/caregivers reported challenges in accessing specialty care due to providers’ unfamiliarity with HCT and felt SCP should be more personalized with robust sections on psychosocial, sexual/mental health, and diet. Providers found the SCP markedly better than what they currently receive. Both patients and providers identified that SCP will facilitate appropriate post-HCT care. Similar themes were identified among the health professional groups, with the exception of screening and care for psychosocial issues more frequently mentioned by the nurses/social workers. Conclusions: Our study highlights the need for a personalized SCP tool to facilitate HCT survivorship care. Patient and provider feedback has been used to refine the SCP for which effectiveness is being assessed in a randomized, controlled trial. Engaging all stakeholder groups in this research helped to ensure patient-centeredness of the SCP.
Physician needs and preferences for information about long-term follow-up and care of survivors of childhood cancer.
Authors: Keats Melanie , Shea Kelsey , Parker Louise , Stewart Samuel A. , Flanders Annette , Bernstein Mark L. 
Published: February 2017

66 Background: The treatments that childhood cancer survivors (CCS) undergo can lead to an increased risk of other health problems later in life, and risk-based follow-up care is necessary throughout their lifetime. Regrettably, family physicians caring for CCS often report having no record of their patients’ past disease, treatment history, or need for follow-up. As the large majority of CCS will transition from specialized pediatric oncology care to generalized adult care in the community, detailed treatment summaries and Survivorship Care Plans (SCP) are needed to ensure that both the survivor and their care providers are adequately informed of the survivors diagnosis, treatment(s), potential risk for late effects, and long-term surveillance and healthcare needs. This qualitative study sought to explore the needs, preferences, and the perceived utility of SCP for family physicians (FP) caring for CCS. Methods: Using publically available Children’s Oncology Group guidelines, a de-identified sample SCP indicating the diagnosis, treatment(s) received, and follow-up recommendations for a common childhood cancer diagnosis was automatically generated using a newly developed algorithm and patient data from the Cancer in Young People – Canada registry. Semi-structured telephone interviews with six FP that have a known CCS in their practice were then used to gain insight into the FP perceived role in the long-term management and care of CCS, their cancer information needs, concerns with communication, their perceived utility of the SCP, and preferred format(s) for receiving the SCP. The constant comparative method was used for thematic analysis. Results: The key themes emerging from the six completed interviews include a lack of confidence among FP in their ability to care for CCS and a need for additional knowledge and resources. FP also identified psychological barriers to cancer care discussions with CCS and identified a patient need for greater psychological support. Overall, SCP were viewed as helpful. Conclusions: SCP are perceived to be of benefit to FP of CCS as they serve to increase their knowledge of patient diagnosis, treatments received, and suggested risk-based follow-up.