bluuebunny/crossref_metadata_2025_split huggingface dataset:
A new paradigm for patient-centered breast cancer care.
Authors: Diaz Kristina M , Paul Edward , Yang Gregory John C. , Phillips Shirley , Bowles John , Milner Trudie 
Published: February 2017

46 Background: The active role of a primary care physician has been shown to improve outcomes for patients in all areas of health management. Cancer care is rapidly evolving as a result of major advances in cancer genomics and the production of new, mostly oral, chemotherapeutic agents targeted to specific patients. The estimated number of cancer survivors is expected to dramatically increase in the next decade. One good example of a new model of cancer care that relies upon the steady presence and involvement of the primary care physician is the care of patients with non-metastatic breast cancer. The current model of breast cancer care includes the primary physician identifying a lesion, obtaining required imaging, making a preliminary diagnosis of presumptive breast cancer, referring to the surgeon and/or oncologist, then resuming care of the patient post survivorship. In the new model of care described here, oncologists play a peripheral role and once therapy is initiated, care by the primary care physician in an integrated, team-oriented, system becomes ideal. Methods: Via a shared care model in which the primary physician is trained to provide direct oncologic care for the patient. They will thereafter initiate a survivor plan that will allow the patient to return to their own medical ecosystem with the least delay and compromise. The primary physician is anticipated to actively direct care for the cancer patient including prescribing recommended cancer treatment, managing medication side effects, and making appropriate referrals when necessary. Results: see below Conclusions: There is good evidence that outcomes by a primary care physician throughout the entire breast cancer treatment phase are comparable to care provided by oncologists in the current model. When the primary care physician is given the right tools and empowered to lead the care for the patient, improved compliance, improved psychosocial quality, and appropriate survivorship follow up can be achieved. With the ability to care for all aspects of their patient’s needs, both biomedical and emotional, the primary physician can, and should, start taking a more active and holistic role in providing care for their patients. Never was this more true then now.
Moving forward after cancer: Implementation of transition appointments and follow-up care plans in Manitoba.
Authors: Carpenter-Kellett Tara , Sisler Jeffrey James 
Published: February 2017

50 Background: Patient experience and local and international clinical research have focused attention on transitions in cancer care from treatment to follow-up. Deficiencies in the quality of survivorship care, including necessary testing, have been demonstrated. The Canadian Partnership Against Cancer has funded projects designed to enhance the implementation of survivorship care plans (SCPs) and to improve cancer system-primary care coordination. CancerCare Manitoba, a provincial agency, is a leader in this work. Methods: The Moving Forward After Cancer initiative combines the generation of standardized written SCPs from the EMR with enhanced patient assessment at the end of curative systemic / radiation therapy. A transition appointment (TA) is provided by the patient’s usual oncology providers and includes screening for distress, appropriate referrals, and provision of a personalized treatment summary and SCP to the patient, with copies to the primary care physician and surgeon. The TA often marks the transfer of medical responsibility to the primary care provider (PCP). Results: Transition appointments have been implemented for colorectal (2012), breast (2014), and lymphoma and gynecologic cancer patients (2015). A total of 364 TAs were done in Manitoba in 2014, of which 140 were with colorectal (stage II and III) and 224 with breast (stage I – III) patients, about 59% and 35% respectively of eligible patients. This is an increase of 385% from the 75 TAs done in 2013. Other patient outcomes being collected include perceptions of continuity of care, confidence in survivorship information, evaluation of the care plan documents and also PCP and oncology team perceptions. In order to support practice change, a workflow solution led by a designated team that is adaptable by all sites across the province has been developed. Conclusions: The provision of TAs and SCPs is being well adopted in Manitoba. We expect that this intervention willimprove the experience of both patients and health care providers and the quality of care at the time of transition to survivorship. Implementation is underway with other disease site groups with the goal of all patients receiving a TA as they transition into survivorship.
Nurse and nurse practitioner use and satisfaction of an online survivorship care plan builder.
Authors: Vachani Carolyn , Hampshire Margaret K. , Hill-Kayser Christine , Arnold-Korzeniowski Karen , Bach Christina , Metz James M. 
Published: February 2017

58 Background: A cornerstone to cancer survivorship care is the education provided to patients regarding late and long-term effects, follow up care, and healthy living after a cancer diagnosis and treatment. Nurses have long provided patient education in oncology care. The provision of survivorship care is a natural extension of this role. An online survivorship care plan (SCP) builder can facilitate this and reduce the resources required for implementation of a survivorship program. Methods: We examined nurse and nurse practitioner (NP) use and satisfaction of two free online SCP builders, OncoLife on http://www.oncolink.org , and the LIVESTRONG Care Plan, between May 2010 and July 2015. Users of the program were queried about their satisfaction with the information provided, if their practice had an established survivorship program and if they would use the program for other patients. Time to complete a SCP was measured. Results: Healthcare providers completed 16,302 SCPs during the timeframe examined. The majority of plans were completed by nurses (n = 7393, 45%) and nurse practitioners (NPs) (n = 6296, 39%), while the remaining were completed by physicians (n = 754, 5%) and unknown users (n = 1859, 11%). When compared to University-based cancer centers (UCC), SCPs completed in community settings were more often delivered by nurses, as opposed to NPs (UCC: Nurses 22%, NPs 53%; community setting: Nurses 57%, NPs 31%; p < 0.001). A satisfaction survey was completed by 415 Nurse and NP users. They reported high satisfaction with the information provided (31% excellent, 33% very good, 26% good); 75% reported that the plan provided “just enough information”, whereas 11% felt it “could use more information”, and 6% felt there was “too much information”. Sixty-four percent had an established survivorship program and 100% would use it for other patients. The median time to complete an SCP was 4 min 17 sec (IQR 2:38-7:19). Conclusions: Nurse and NP users report high satisfaction using an online SCP builder. In community settings, nurses were completing the plan significantly more often than NPs. The short time required to create the SCPs may allow practices to efficiently meet regulatory requirements with minimal resources.
Improving patient participation in a breast cancer survivorship program at a safety net hospital.
Authors: Shrestha Shakuntala , Khosla Pam , Molnar Janos , Corona Maria Eugenia , Garcia Sofia M 
Published: February 2017

60 Background: To provide comprehensive services and meet Commission on Cancer (CoC) accreditation requirements, we developed and evaluated a customized breast cancer SCP template and delivery model. Objective: To implement and pilot test survivorship care plan (SCP) delivery for breast cancer survivors. Methods: Clinicians at a safety net hospital partnered with investigators at an academic institution to start a breast cancer survivorship care program. We developed an SCP template that is CoC-complaint and responsive to input gathered in 2 focus groups with breast cancer survivors (n = 12) and interviews with staff (n = 8). Oncologists and nurses identified and referred English-speaking women who had completed breast cancer treatment. Participants completed baseline measures prior to receiving individualized SCPs in a survivorship consultation visit with a dedicated APN. In response to high no-show rates, we expanded clinic scheduling to harmonize with participants' other medical appointments. Interim feasibility results for our ongoing study are presented here. Results: A total of 154 patients were screened to reach target enrollment (n= 80) within 20 months. Participant median age was 60 ± 11; 71% were African American, 14% Hispanic; 11% Non-Hispanic White and 92% had household incomes < $20,000. Average times were: 30 ± 13.4 minutes for abstracting patient clinical information in preparation for the survivorship visit; 25 ± 16 minutes for completing individual SCPs; 22±7.65 minutes to review / deliver the SCPs with patients. The difference in no-show rate between first 3-month recruitment period (clinic limited to one day/week) and next 17 months (clinic appointment expanded to accommodate patients' schedule) was statistically significant, p = 0.028. Conclusions: Tailoring SCP templates and delivery models to the needs of a safety net hospital aided the sustainability of a new survivorship clinic. Patient non-adherence to scheduled visits was significantly improved by expanding clinic hours. Significant clinician time was spent preparing SCPs and a level 4 visit (25 minutes) does not adequately reflect this effort. This study is funded by the American Cancer Society, Illinois Division (Grant# 254698).
Evaluation of patient characteristics that are associated with response to a survivorship care planning intervention.
Authors: Kvale Elizabeth Ann , Huang Chao-Hui , Bae Sejong , Demark-Wahnefried Wendy , Meneses Karen , Azuero Casey Ballentine , Ritchie Christine 
Published: February 2017

8 Background: Appropriate targeting of survivorship care planning interventions to patient need is essential, but little evidence exists to support systematic triaging according to survivor needs. We demonstrated the positive impact of a self-management focused survivorship care planning (SCP) intervention on patient outcomes including wellbeing and depressive symptomology; herein we report how patient characteristics predict response to that intervention. Methods: Newly-diagnosed breast cancer survivors (Stage 0-IIIB) were randomized to receive the patient owned survivorship care planning intervention (n = 40) or usual care (n = 39). The intervention arm demonstrated improvements from baseline to 3-month follow-up in self-reported health and depressive symptom burden as measured with SF-36 Health Survey and Personal Health Questionnaire Depression Scale. We examined patient characteristics associated with response to the intervention. Results: Baseline characteristics including younger age, lower perceived finance adequacy, higher medical comorbidity, burden of depression, as well as anxious/preoccupation coping were significantly associated with greater self-reported health change (p < 0.05). Additionally, higher levels of cancer symptom severity, fatigue, lower social functioning and mental health status at baseline were significantly correlated with greater reductions in depressive symptoms (p < 0.05). Race, education, health literacy level, and cancer stage were not associated with improved outcomes. Conclusions: While SCP is an important step to improving care for cancer survivors, it is likely that some cancer survivors may need a robust intervention to support self-management of survivorship issues. Our preliminary findings suggest that younger patients with higher perceived financial, emotional, and cancer symptom burden may benefit from a focused SCP intervention to a greater extent than patients without these characteristics. A larger scale pragmatic study is needed to further confirm the associations, investigate the mechanism of effective interventions, and develop pragmatic strategies that target survivors who need robust SCP support.
Evaluation of electronic care plan usage and usefulness among breast cancer survivors.
Authors: Sesto Mary , Hocking William Gray , Wiegmann Douglas , Yen Thomas Y , Gribble Mindy , Zeal Jamie , Koehn Tamara , Sun Wenjun , Tevaarwerk Amye 
Published: February 2017

83 Background: Survivorship care plans (SCP) are recommended to improve communication between breast cancer survivors (BCS), primary care, and oncology. Objective evaluation of survivor access of specific care plan content is challenging as commonly-used formats (e.g., paper or electronic file) prevent tracking of usage. This project aimed to evaluate the usage and usefulness of an electronic survivorship care plan (eSCP) that could track access and pages visited. Methods: We recruited 128 BCS from outpatient oncology clinics. 121 BCS received eSCP access via an online secure patient portal; seven received paper copies and are not included in this analysis. The research team customized the portal to track eSCP usage and page visits during the study period (at least 12 weeks of eSCP access). The eSCP consisted of four internal pages (Guide, Treatment Summary, Followup Plan, and Glossary) plus 21 external hyperlinks to survivorship resources. eSCP usefulness and understandability were evaluated using 10-item Likert scales: 1 (not at all useful/very hard to understand to 10 very useful/very easy to understand). Results: 90 out of 121 (74.38%) participants accessed the eSCP. The majority accessed the eSCP within two days of receiving access (N = 70/90, 77.8%) and visited 1 to 3 times (N = 81/90, 90%). Treatment Summary was the most frequently visited internal page (158 visits by 69 participants). Other page usage: Followup Plan (124 visits by 65 participants), Guide (113 visits by 62 participants), and Glossary (46 visits by 31 participants). 34 participants (37.78%) accessed external pages from the eSCP. Participants perceived the overall care plan as useful (8.78, 95% CI [8.38, 9.19]) and easy to understand (8.81, 95% CI [8.47, 9.16]). Conclusions: We found high usage rates among BCS provided an eSCP and the majority perceived the eSCP as useful and easy to understand. Based on favorable assessment and use, it is reasonable for eSCPs to serve as a tool to facilitate communication and care coordination for survivors, especially as access to and use of mobile device technology and electronic patient health portals increase. Minority and rural survivors access and use of such features may require further research.
Nurse navigation: The key to a seamless transition.
Authors: Fulbright Joy M. , McClellan Wendy , Doolittle Gary C. , Krebill Hope , Ryan Robin , Alsman Kyla , Lowry Becky N. 
Published: February 2017

84 Background: Children's Mercy (CM) established a cancer survivorship clinic that cares for approximately 180 survivors a year. A third of the survivors are 18 years or older requiring transition to adult care. The importance of transitioning childhood cancer survivors from pediatric oncology care to adult primary care has been acknowledged in literature, but obstacles remain. Barriers include patient and provider anxiety, difficulty navigating the complex health care system and lack of knowledge regarding late effects. CM and The University of Kansas Cancer Center (KUCC) collaborated to decrease barriers to transition for childhood cancer survivors. Methods: The work group met for 2 years to develop the clinic at KUCC. Models and delivery of survivorship care, including the breast cancer survivorship clinic at KUCC, were reviewed. A shared nurse navigator was identified as an essential component to a seamless transition. Philanthropic support was obtained and job description was developed. Contracts were negotiated to allow the navigator to be present at both institutions. Results: The Survivorship Transition Clinic (STC) at KUCC launched July 2014, with a navigator supporting patients at CM as they begin their transition. The same navigator then meets with the patient at KUCC STC as they initiate care. The navigator provides treatment summaries, patient education and navigates the referral services for survivors. Since clinic launch, 16 survivors out of 16 have successfully transitioned from pediatric to adult survivorship care. Positive feedback was received from patient satisfaction surveys that were administered. A common theme showed a relief from anxiety due to having a contact person to facilitate communication among providers in a complex healthcare system. Conclusions: The nurse navigator has minimized anxiety about transition for patients and parents as she establishes a relationship with patients at CM, and then is able to provide continuity as they transition to the STC at KUMC. The navigator also improves communication between pediatric providers, adult primary care providers and sub-specialists caring for the patients. Overall, our transition process has been effective and is now serving as a model across both institutions.
Parental preparedness for late effects in survivors of childhood cancer.
Authors: Greenzang Katie , Cronin Angel , Mack Jennifer W. 
Published: February 2017

85 Background: Parents of children with cancer desire information on late effects of treatment. In a prior study conducted at diagnosis, we found that parents felt they received better quality information about treatment than about late effects. Methods: We conducted a cross-sectional survey of parents of children with cancer at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center at least 5 years after diagnosis; all parents had previously participated in a study about communication at diagnosis. In this follow-up study, 65% of parents of children who were still living, and whom we were able to contact, participated (n = 90). 77% of respondents (n = 69) were parents of disease-free survivors; 23% (n = 21) were parents of children with relapsed disease. We assessed parental preparedness for cancer care and late effects of treatment. Results: Most parents reported feeling extremely or very well prepared for their child’s pediatric oncology treatment (86%), daily care needs during treatment (85%), and for the chance of their child being cured (87%). Compared with preparation for treatment, fewer parents felt extremely or very well prepared for future limitations experienced by their children (63/88 = 72%, McNemar’s Test p = 0.003) or for life after cancer (42/66 = 64%, p < 0.001). In bivariable analysis among parents of disease-free survivors, parents were more likely to feel prepared for future limitations when they believed their child had no limitations in quality of life (OR 4.00, 95% CI 1.32, 12.1; p = 0.01), and when they felt that communication with their child’s oncologist had helped them deal with worries about the future (OR 4.38, 95% CI 1.31, 14.7; p = 0.02). Conclusions: Parents feel prepared to manage their child’s cancer treatment, but they feel less prepared for survivorship. High quality communication with providers may help parents feel more prepared for life after cancer therapy.
Opportunities for precision medicine: Factors associated with participation in genetic research among breast cancer survivors.
Authors: Sheppard Vanessa , Zheng Ling , Graves Kristi D , Hurtado-de-Mendoza Alejandra , Tadasse Mahlet 
Published: February 2017

94 Background: Finding unique cancer therapies based on the specific genomic profiles of a person’s tumor is a national priority. Precision medicine can reduce disparate outcomes – particularly among Black breast cancer survivors who have higher mortality rates. Black women tend to be underrepresented in genomic research. Methods: Hormone receptive positive breast cancer survivors (Whites = 334, Blacks = 124, Other = 23) were recruited via hospitals and outreach. Data were collected via telephone interviews to assess sociocultural and health care processes; clinical data were abstracted from charts. Cell pellets were harvested from mouthwashes by centrifugation, followed by washing with PBS solution twice. After the baseline, women had a brief telephone information session. Low literacy materials explaining biospecimen collection were mailed. The primary outcome was receipt of the biospecimen sample in three months. Logistic regression assessed factors associated with biospecimens receipt. Results: Most (69%) survivors provided biospecimens. Most (92.8%) samples had good size cell pellets. Most (93%) of the mouth wash samples will have sufficient DNA for genotyping assays. In bivariate analysis, race, education, and mistrust were not associated with biospecimen receipt (p> .05). Survivors more likely to provide biospecimens had higher ratings of: confidence in physicians’ technical skills, communication with providers, satisfaction with time with providers, and overall satisfaction with care (p< .05). Health literacy and functional well-being were also associated with biospecimen receipt. In multivariate models, only survivor’s ratings of their level of confidence in her oncologists’ technical skills remained significant (OR: 1.6 per 1 point increase; CI: 1.1, 2.5). Conclusions: Regardless of race, most breast cancer survivors are willing to provide biospecimens for genomics research. Brief informational sessions and simple low-literacy materials may enhance participation. Relationships with oncologists are salient to promoting survivors participation in genomics research.
Active surveillance for early stage prostate cancer: What do men and their partners think?
Authors: Xu Jinping , Mallapareddi Arun , Ruterbusch Julie , Reamer Elyse , Eggly Susan 
Published: February 2017

95 Background: Despite growing recognition over the last decade that active surveillance (AS) is a reasonable management option for men diagnosed with localized prostate cancer (LPC), only a minority of men choose AS. This study examines the conceptualizations, experiences, and reasons for choosing AS among men with LPC and their partners. Methods: We conducted three focus groups with men with LPC who had chosen AS (7 black, 5 white) and two focus groups with their partners (all women, 2 black, 4 white). Men were identified from a cancer registry or from an academic urologists’ practice. Focus groups were video/audio recorded, transcribed and analyzed using qualitative thematic analysis. Results: Men’s median time on AS was 18 months (range 6-72) and median age was 61 years (range 47-71). Men used many different terms (mostly “wait and see”) to describe similar AS protocols. AS was seen as delaying unnecessary treatment and keeping current function with curable treatment available later if needed. Black men mentioned concerns that some physicians profit by providing unnecessary treatments. Reasons for choosing AS included seeing their cancer as “small” or “low-risk” and trusting their physician’s advice/monitoring, despite reported concerns about PSA being an unreliable test and painful biopsies. Men recognized, but were comfortable with, the small but real threat their cancer could grow. Men found they had to justify their choice to other family members, even when their partners were supportive. Partners saw themselves as very involved and influential in the treatment decision. They were comfortable with AS because of their trust in physicians. Partners believed they know their husband’s physical and mental health better than the men themselves. Conclusions: Physician trust and description of the cancer as low-risk were the most cited reasons for adopting AS. Emphasizing the low-risk nature of the cancer and enhancing physician trust may increase the acceptability of AS.