bluuebunny/crossref_metadata_2025_split huggingface dataset:
The humanistic burden of advanced non-small cell lung cancer on patients and their caregivers.
Authors: Taylor-Stokes Gavin , Wood Robert , Lees Michael , Malcolm Bill , Chirita Oana 
Published: March 2017

220 Background: A diagnosis of advanced non-small cell lung cancer (aNSCLC) presents significant physical, emotional and financial challenges for patients and their caregivers. This study provides insight into the humanistic burden on patients and their caregivers, as the disease progresses. Methods: Data were taken from a chart review and a cross-sectional study of a NSCLC patients and caregivers in France, Germany and Italy. Physicians provided data on patients’ age, sex, stage, line of therapy and ECOG (Eastern Cooperative Oncology Group) performance status (PS). The patient survey assessed the patients’ health state (EQ-5D), impact on work/activities (WPAI) and on quality of life (EORTC QLQ-C30). The caregiver survey included the WPAI and Zarit Burden Interview (ZBI). Patient and caregiver outcomes were stratified by the patients’ ECOG PS from 0 to 4 (best to worst status). Statistical significance was assessed using Kruskal-Wallis tests. Results: 1,030 patients completed the survey (mean (SD) age: 64.5 years (10.1), 65.9% male); the majority were stage IV (88.4%) and most (70.5%) were receiving 1st line therapy. Caregiver forms were completed by 41.5% of patients’ caregivers; mean (SD) age: 53.5 years (12.5), 72.6% female; most were the patients’ partner (54.9%) or child (31.9%). In total, 19.4%, 43.5%, 27.4% and 9.7% of patients had a current ECOG PS of 0, 1, 2 or 3/4, respectively. All outcomes stratified by ECOG PS are reported below (all P < 0.0001). Conclusions: As patients’ functionality deteriorates, so do their outcomes relating to health utility, impairment and quality of life. This deterioration also increases the burden on the caregiver. This study was sponsored by Bristol-Myers Squibb. [Table: see text]
Cancer survivorship care in rural community: Provider perspective.
Authors: Noyes Katia , Holub David , Rizvi Irfan , Swanger Alex , Reisdorf Coty , Tomaszewski Kenneth , Constine Louis S. 
Published: March 2017

50 Background: Advances in oncologic sciences have resulted in successful treatments for many cancers with improved survival for millions of patients. Efficient delivery of cancer care now requires not only skills and professionalism of each provider but also well-orchestrated performances of multiple oncology, primary care and social services providers acting as one multidisciplinary team. It is unknown, however, whether providers are prepared for and accept their new roles in patient cancer care teams across region. This study assessed perspectives of providers involved in care for patients with cancer about their changing roles. Methods: We conducted a focus group with a diverse group of stakeholders involved in cancer care (2 primary care physicians, 1 rural surgeon, 2 rural oncologists, 2 oncology nurses, 2 cancer patients and a caregiver). The focus group was conducted using ThinkTank software, a collaborative tool that allows participants to communicate virtually in real time, screen share, express preferences and confidentially rank each other responses. We also conducted two traditional focus groups with rural care managers, nurses, social workers and public health providers. Results: The focus groups identified significant differences in attitudes and beliefs toward regional team-based cancer care between various providers. PCPs ranked oncology issues as less important to their practices compared to other chronic conditions associated with performance metrics and financial incentives. APPs ranked care coordination issues as more important compared to PCP rankings from the same practices. Rural providers identified limited staffing, outdated health IT systems, and lack of expertise as major barriers to multidisciplinary team care. Both patients and providers highlighted importance of trust and face-to-face communication in treatment adherence and choice of care setting. Conclusions: Current health information systems, performance metrics and payment models represent significant barriers to integrated care delivery in oncology and survivorship. Successful implementation of efficient and sustainable regional oncology program will require a multi-dimensional intervention to address each of these barriers.
Identifying critical data elements for a provincial transition plan from a primary care perspective.
Authors: Hunter Stacey , De Rossi Stefanie , Gollnow Angelika , Kim Grace , Kucharski Ed , Martin Taylor , Soobrian Jasmin , Sussman Jonathan , Zwicker Victoria , Strasberg Suzanne 
Published: March 2017

54 Background: Cancer Care Ontario is the provincial government advisor on the cancer and renal systems, as well as access to care for key health services. Enhancing flow of patient information and care plans are priorities to improve continuity and quality of survivorship care. Cancer Care Ontario’s Primary and Community Care and Survivorship Programs have initiated work to identify required information that primary care providers (PCPs) should receive about a patient’s cancer care at the point of transition back to primary care. Methods: Fifteen focus groups were conducted with PCPs in Ontario using a guide to facilitate group discussions on the utility and content of transition plans. Based on the collective feedback, thematic analysis was conducted on data elements that were expressed as critical with 12 common themes identified. Transition plan materials across Ontario’s Local Health Integration Networks and relevant jurisdictions in Canada and the United States were also reviewed to abstract a list of all documented data elements. A comprehensive matrix of data elements was then created by incorporating the list of all documented data elements with the 12 common themes. Using this matrix, prevalence of data elements amongst reviewed materials was ranked by frequency. A Modified-Delphi approach was used to validate and prioritize data elements with Cancer Care Ontario provincial and regional primary care clinical leadership. Results: In total, 21 documents were reviewed and 30 standard data elements were identified and ranked by frequency. The 10 most frequent data elements were classified as required for a standard transition plan. The remaining data elements were presented to 29 Cancer Care Ontario Cancer Leads to reach consensus on a core set of data elements to be required for inclusion in a transition plan. Conclusions: Essential data elements for inclusion in a transition plan have been identified from the perspective of PCPs. Next steps include engaging patient and family advisors, oncologists, and health system administrators through a phased regional consultation process. The role of synoptic reporting for a future standard survivorship transition plan will also be explored.
Relationship of age and cancer treatment to receiving treatment summaries and survivorship care plans in female young adult cancer survivors.
Authors: Shliakhtsitsava Ksenya , Romero Sally A. D. , Roberts Samantha , Su Irene 
Published: March 2017

55 Background: For cancer survivors who were diagnosed with cancer during childhood, adolescence and young adulthood years, transitioning into survivorship and post-cancer treatment care remains challenging and may be aided by treatment summaries (TS) and/or survivorship care plans (SCP). Little research has been conducted on receipt of SCP and/or TS from the patient perspective. The objective of this study was to determine patient- and cancer-specific characteristics that are associated with receipt of SCP and/or TS (SCP/TS). Methods: 240 female young adult cancer survivors (YCS) between ages 18-44 were recruited to a national cohort study on reproductive health and completed a web-based survey that included report of receiving SCP and TS. We used logistic regression models to estimate odds ratios (OR) for characteristics associated with receipt of SCP/TS. Results: Mean age (standard deviation) was 32.8 (5.8) years; mean age at cancer diagnosis was 27.2 (7.1) years. Forty-eight (20%) participants were diagnosed with cancer at < 21 years of age. Only 47% of participants reported receipt of SCP/TS. In unadjusted analyses, current age, younger age at diagnosis, education level, receiving chemotherapy and receiving bone marrow transplant were significantly associated with report of SCP/TS receipt. In multivariable analyses, survivors diagnosed at younger age ( < 21 years) had 2-fold higher odds of SCP/TS receipt (OR 2.0, 95% CI 1.0-3.9). Chemotherapy treatment (OR 2.3, 95% CI 1.2-4.6) and bone marrow transplantation (OR 7.2, 95% CI 1.5-33.3) were also significantly associated with SCP/TS receipt. Conclusions: A significant proportion of YCS do not recall receiving a TS or SCP to aid in the transition to post-cancer treatment survivorship care. Receipt of these documents is not uniform across the young cancer survivor population. Improved integration of TS and SCP into cancer survivorship care is needed.
An evaluation of survivorship care plan program.
Authors: Spoljaric Debra , Depp Brittany , King Allison A. 
Published: March 2017

62 Background: The Commission on Cancer mandated the development and implementation of survivorship care plans (SCP) in 2015. Minimal evidence exists to suggest SCP are meaningful to survivors and primary care physicians (PCP). We sought to evaluate the usefulness of the SCP as perceived by both survivors and PCP. Methods: Phase I was 8-month pilot using a 7-page SCP detailing medical information and follow up sections addressed to the survivor and to the PCP. To evaluate patient and PCP views on the SCP, a telephone survey was created for patients and a two-page Likert scale survey for PCP was faxed. Phase I evaluations revealed 90% of survivors did not look past page 2 of the document and 16% of PCP felt it was too long and busy to read. The SCP was edited for a 3-page version and implemented in Phase II over 11-months. Results: In Phase I, 78 SCP were delivered to survivors, 58% were surveyed. Of PCP, 24% responded. In Phase II, 895 SCP were delivered, and 274 (31%) survivors surveyed. In Phase I and II, when asked to identify themselves as a cancer survivor, 282 (88%) confirmed and 21 (7%) were unsure. After reviewing the SCP, 93.1% understood their plan of care; 79.6% understood potential late effects; 33% were aware of support or resources available; 96% would recommend to another cancer survivor to get one. In Phase II, 16% (43) of PCP responded. Overall replies were positive: 61% found resource list helpful; 66% wanted more specific information about patient potential late effects; 87% agreed knowing symptoms of late effects is helpful. 70% wanted clarity on follow up tests needed and who should order. PCP overwhelmingly agreed (88%) the SCP is helpful. 90% agreed that knowing ongoing side effects of treatment was important. Conclusions: Survivors liked having their cancer treatment in one concise document and PCP physicians feel that the SCP is meeting their basic needs. PCP are interested in more specific long term side effects to monitor in their patients and direction on what follow-up tests are needed and who is ordering them. Further research is needed to study the impact of SCP on survivors’ health.
A study to identify subjective gaps in survivorship knowledge of health care professionals in London.
Authors: Stanway Susannah Jane , Taylor Claire , Noble Jillian Louise , Doyle Natalie , Young Teresa , Cunningham Nicola , Capelan Marta , Van Hemelrijck Mieke , Chen Michelle , Kinsella Netty , Evans Simon , Wiseman Theresa 
Published: March 2017

63 Background: The London Cancer Alliance (LCA), created in 2011, is an integrated cancer system consisting of 14 NHS organisations serving a population of 5.7 million. The multi-professional Survivorship Pathway Group aims to improve the outcomes of adults living with and beyond cancer. Methods: A 14-15 point questionnaire was developed to identify gaps in survivorship knowledge of oncology health care professionals (HCP) working in London. We were interested in HCP’s knowledge of the existence of the Recovery Package (Holistic Needs Assessment and care plan, Treatment Summary, access to a Health and Wellbeing Event and Cancer Care Review). The survey was uploaded onto Smart Survey and sent to 434 HCPs. Results: 167 surveys were anonymously completed. The distribution of respondents included Clinical Nurse Specialists(CNS), physiotherapists, dieticians, oncologists. The majority of respondents worked in specialist centers (44%), with 35% working in acute secondary care, 27% in acute tertiary care and 6% in the community. HCPs from all tumour groups were represented, though breast cancer and head and neck cancer were best represented. The majority of respondents were familiar with some or all of the components of the Recovery Package (80%). HCPs were most confident when asking about anxiety/depression (83%) but least confident or confident to some extent asking about changes in cognitive function (49%) and bone health (49%). When addressing needs, HCPs were confident addressing fatigue (47%) but less confident addressing cardiac complications (65%) and sexual concerns (64%). CNSs in particular were confident asking and addressing most concerns but many were not confident or were only somewhat confident addressing menopausal symptoms (34%) or lymphedema (37%). Further training was identified in psychological support, sexual consequences and management of long-term side effects. The predominant research priority identified was long-term side effects. Conclusions: Data from this survey will inform local educational fora, service mapping studies and the LCA Survivorship Research Group’s future strategy.
The Commission on Cancer’s survivorship care plan standard: Implementation is underway.
Authors: Miller Nina S. 
Published: March 2017

72 Background: The American College of Surgeons Commission on Cancer established a patient-centered standard regarding the delivery of a survivorship care plan to cancer patients. In response to recommendations from the 2006 National Academy of Sciences, Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, a working group developed a set of Continuum of Care standards to address the psychosocial needs of cancer patients. In 2009 Commission on Cancer members had met to discuss a strategic plan for addressing a major shift in accreditation standards from process to patient-centered care with a focus on patient outcomes. According to Cancer Program Standards: Ensuring Patient-Centered Care, the cancer program must implement a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. Programs are in full implementation mode and surveys monitoring this Survivorship Care Plan Standard have begun this year. The care plan provides guidance and recommendations for survivors and their healthcare providers to address the medical and psychosocial problems that may arise post-treatment. By delivering a plan, the patient is empowered with information about the treatment they have received, the recommendations for their care going forward, and recommended resources. Methods: Programs submit documentation to describe their process for delivery of care through an electronic activity report. Documentation of this standard includes method of delivery, identification of eligible patients, implementation process and tracking. This presentation will summarize program submissions for 2015-2016 and include an analysis of the details of the standard compliance as reported by accredited programs. Results: This analysis will include responses from all Commission on Cancer accredited programs reporting on this standard. The analysis will provide information about the trends in program implementation and compliance with the standard. Conclusions: This analysis will inform future decisions about the content of plans, the value of plan delivery to the provider and to the patient and summarize current practice.
Survivorship care plans: Strategies to enhance patient utility and value.
Authors: Harris Diana , Stricker Carrie Tompkins , Walker Deb , Katzman Amanda , Still Nadia , Digiovanni Laura , Finitsis David , Salner Andrew L. , Dornelas Ellen A 
Published: March 2017

75 Background: A decade ago the Institute of Medicine (IOM) recommended that every survivor receive a survivor care plan (SCP), yet despite endorsements of clinical merit, evidence of their effectiveness is inconsistent, and patient satisfaction with, use of, and perceived utility of SCP’s remains unclear. Methods: This ongoing multicenter pilot enrolls breast cancer (BC) patients who have recently completed active treatment. Patients complete an electronic patient reported outcomes (ePRO) survey via the Carevive Care Planning System (CPS), which is combined with clinical data to electronically generate tailored care plans with survivorship and symptom-specific recommendations (i.e. follow-up care, self-management, supportive care referrals) in real-time. Patients receive their care plan at a consultative survivorship visit. Approximately 6-weeks following SCP receipt, patients complete a survey to evaluate satisfaction Results: Over 200 patients have received SCPs to date; 101 have completed follow-up surveys. Patients are on average 59 years old (Range: (33-84 yo), female (100%), and with 0-III stage BC. Study outcomes include patient-reported use and helpfulness of, as well as satisfaction (1-5 Likert scale items) with, their SCP. On average, patients were “very satisfied” with their SCP overall (M = 4.08), and 90% (n=90) would, “recommend other women receive a similar care plan after cancer treatment”. In addition to majority of patients (99%) having read or planning to read the SCP carefully, the three most frequently cited ways for use/planned use of the SCP include to: inform about symptoms (90%); speak with healthcare professionals about concerns (88%); and help identify information online (86%). Seventy-two (78%) patients and 68 (74%) reported that SCP’s were most useful to helping them make changes in what they ate and types of exercises, respectively. Conversely, 51 (58%) of patients and 47 (59%) of patients reported that the SCP was most useful to helping them find support resources and talking about personal cancer experience with family members. When asked to recall what recommendations their SCPs endorsed, patients most commonly recalled surveillance recommendations (e.g. follow up visits (83%), mammograms (80%), compared to recommendations specific to reported concerns and symptoms (e.g, management of sexual concerns (31%), evaluation and management of lymphedema (27%)). Conclusions: n/a
From common sense to evidence-based: An evaluation of survivorship planning.
Authors: Gaster Sam 
Published: March 2017

76 Background: The Institute of Medicine’s (IOM; 2005) seminal report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommended survivorship care plans (SCPs) as a common sense approach to improve the care of cancer survivors. The American Society of Clinical Oncology (ASCO; Mayer et al., 2014) reiterated the importance of these plans and provided strategic guidance for their implementation. The American College of Surgeons’ Commission on Cancer requires SCP delivery from accredited cancer programs as of 2015. Despite the push from these organizations, SCPs remain understudied (Mayer, Birken, Check, & Chen, 2014). The impact of SCPs on patient outcomes is poorly understood. Additionally, there is limited data on patients’ preferences for SCPs. This evaluation describes the use and assessment of SCPs at six regional cancer centers in the Midwest. Methods: Feedback was collected from 30 cancer survivors after receipt of a SCP. Responses were collected with 22-item questionnaire. Outcomes included survivors’ satisfaction with the clarity and detail of SCPs, likelihood to use SCPs in the future, intention to share SCPs with other health care providers, and perceived knowledge about treatment and follow-up care. Results: Over 75% (n = 23) of survivors agreed that SCPs were easy to understand. Ninety-three percent (n = 28) of survivors indicated that SCPs contained the right amount of information. Fifty-three percent (n = 16) of survivors are very likely to use their SCP in the future, whereas 47% (n = 14) are somewhat likely to use their SCP in the future. The majority (77%; n = 23) of survivors intend to share their SCP with another health care provider. Ninety-seven percent (n = 29) of survivors felt more knowledge about their treatment and follow-up car as a result of receiving a SCP. Conclusions: This evaluation highlights the many benefits of SCPs for cancer survivors. Results suggest that SCPs educate survivors about their treatment and follow-up care. Additionally, results indicate that many survivors intend to share SCPs, perhaps allowing for better coordination between oncology and primary care. Further research is warranted on the adoption of healthy lifestyle behaviors and receipt of routine health care after delivery of SCPs.
Finding common ground: Aligning institutional and survivorship steering committee (SSC) goals.
Authors: Ward Andrew Joseph , Bell John , Jerkins Lindsey 
Published: March 2017

80 Background: Developing a Survivorship program goes beyond providing survivorship care plans to patients upon completion of cancer treatment. Programs can take many forms; ranging from very robust with long-term follow-up to minimal, with patients returning to the primary care provider when cancer-specific treatment is complete. To develop our program at an academic medical center with 2900 annual new cancer patients, we chose to enlist a SSC of survivors to help shape our program. Methods: In addition to fulfilling the American College of Surgeons Commission on Cancer Standard 3.3 requirements, we also desire to meet the needs of the patient. Thus, the survivorship program coordinator requested that providers within the Cancer Institute (CI) identify patients to form a SSC. 13 physicians contributed a total of 14 patients as candidates. Each patient was invited to participate and 7 accepted. The initial SSC meeting was held 6 months after initiation of our survivorship program. Results: SSC members represented 5 different primary malignancies and had varying degrees of experience within the treatment continuum. The initial meeting began with an overview of the current services available in the CI. Members were also given the opportunity to share treatment & survivorship experiences. Some of the SSC members utilized patient navigation during CI initial intake; others had experience with CI support groups. Some used ancillary services such as physical therapy, integrative health, financial counselors, and social services; others were not aware these services were available. A list of 4 categories of goals for program development was suggested with a meeting planned again in one year to review progress. Meeting one year later, the group determined progress was made in 3/4 (75%) of the goals. Conclusions: When creating a Survivorship program, patient goals should be considered and aligned with institutional and accreditation goals. One way to ensure that this is accomplished is to enlist front-end input from a SSC that represents a wide variety of treatment experiences and providers. In our experience, this strategy leads to alignment of patient and programmatic goals resulting in increased patient satisfaction and program quality.