bluuebunny/crossref_metadata_2025_split huggingface dataset:
Uncharted territory: Life after cancer for young adults.
Authors: Beaupin Lynda M. , Hydeman Jennifer A , Uwazurike Odochi 
Published: March 2017

30 Background: Similar to survivors of childhood cancer, young adult (YA) survivors have distinct and complex medical and psychosocial needs. However, there are no specific follow-up guidelines for patients who were diagnosed as a young adult. Most YA survivors receive inadequate survivorship care with minimal surveillance for late effects. This study aims to examine the concept of survivorship care planning and determine what aspects of post-therapy care is most needed. Methods: Two focus groups were held to investigate the post treatment experience of YA survivors. Participants completed cancer treatment and were diagnosed between 2005 and 2011. They either continued to receive follow-up care or did not. These were further subdivided based on age at diagnosis: 18-24; 25-30; 31-39 years. Participants answered predetermined questions during their session. A demographic questionnaire was given and a SCP (a treatment summary [TS] and its associated long- and late-term risks) developed based on their electronic medical records. Results: 27 YAs participated in the focus groups. SCPs were developed for each participant and required 45 - 180 minutes to complete. 78% felt TS were accurate and 44% learned of long/late-term side effects they were previously not aware of nor receiving surveillance on. Barriers to continued follow-up were related to health insurance status, poor communication with their oncologist, and on-going adjustment challenges. Initial feedback from the SCPs indicates that YAs seek additional information on long/late-term side effects, roadmap for follow-up visit, and information on psychosocial support and YA specific resources. Conclusions: For young adults diagnosed with cancer, there are no guidelines on follow-up care. Young adult survivors are not aware of long- and late-term side effects they may have, and many do not know how often they need to have continued follow-up. Despite great strides made in survivors of childhood cancer, the same cannot be said for young adult survivors.
Inequities in cancer outcomes between different healthcare systems in Brazil.
Authors: Ashing Kimlin Tan , Bergerot Cristiane Decat , Philip Errol James , Okuma Getulio 
Published: March 2017

31 Background: Studies have shown a clear difference among minority and economically disadvantaged patients. Less is known about marginalized populations in Brazil, a country that possesses a two-tiered healthcare system, based on socioeconomic status. We sought to explore differences in quality of life (QOL) and distress among patients receiving care within these systems. Methods: 270 patients were assessed for distress (DT), anxiety/depression (HADS) and QOL (FACT-G). Half of them was recruited at a private institution (PRI) and the other at a public institution (PUB) (each group: n=135; 68.9% breast and 31.1% gynecological cancers). We calculated descriptive statistics and examined QOL and distress using T-test and ANOVA. Results: We found ethnic differences between PUB (50.4% white, 32.6% mulato and 14.1% black) and PRI patients (82.9% white), and income disparities (PUB patients report almost a third less monthly income than PRI patients). PUB patients were mostly late-stage diagnosed 70.4% compared to PRI counterpart 42.2% (p<.001). In general PUB patients reported higher rates of distress and anxiety/depression (p<.03); and poorer QoL outcomes (p<.01). Conclusions: This preliminary study is one of the first to investigate inequities in cancer outcomes among patients in Brazilian healthcare settings. Analyses revealed notable differences between groups across demographic characteristics, while individuals of lower socioeconomic status reported significantly poorer psychosocial outcomes. These results suggest a complex interaction between ethnicity, access to care and cancer outcomes, and warrants further research to better understand and address these inequities. Further discussion of the role of psycho-oncology research and clinical practice in reducing disparate outcomes among Brazilian cancer patients is warranted.
Gaps in supportive and survivorship care for lung cancer patients.
Authors: Perloff Tara , King Jennifer C. , Rigney Maureen 
Published: March 2017

32 Background: Clinical guidelines increasingly recommend an expansion of multidisciplinary care for oncology patients to include supportive and survivorship care. Despite recommendations, lung cancer patients may not access these services due to implementation challenges among health care delivery systems. Our study goal was to assess treatment and care planning from the perspectives of lung cancer patients and caregivers. Methods: A Community Needs Assessment survey was electronically distributed to lung cancer patients and caregivers. 820 people responded, including 471 patients and 349 caregivers. The overall completion rate was 72.6%. The survey assessed the patient’s care team, values-based discussions in care planning, discussions regarding palliative care, and survivorship care planning. Demographic information was collected to determine if patterns of care correlated with geographical or socioeconomic factors. Results: Less than 50% of patients reported having a conversation about their values and care goals with their treatment team before determining their treatment plan. Less than 30% of patients reported a mental health professional, social worker, palliative care specialist, or nurse navigator as part of their care team. Although research shows a survival benefit to lung cancer patients receiving palliative care, only 26.9% of active patients had discussed palliative care and 20.13% reported receiving it. For caregiver reported data, the patients receiving care had more advanced cancer and had often not survived. Of those who had completed treatment and survived more than 5 years beyond diagnosis, only 22% of patients and 15% of caregivers reported having a survivorship care plan. Conclusions: The majority of lung cancer patients and caregivers reported having not received palliative care, survivorship care plans, psychosocial support, or values-based discussions with their oncologist. Respondents were technology enabled and generally health literate indicating that these problems could be more widespread in rural, lower socioeconomic areas where lung cancer is common. Addressing these problems in health care delivery could positively impact the survivorship of lung cancer patients and their families.
Online survey of young adult cancer survivors and illness-related stressors.
Authors: Golchin Ava , Dawson George Anthony 
Published: March 2017

33 Background: Post-traumatic stress disorder (PTSD) in cancer patients and those with life threatening illnesses has been officially recognized in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition: DSM-4, since 1994. However, the updated 2013 DSM-V has redefined the idea of trauma and stress-related disorders resulting from life threatening illness as an amalgam of anxiety and adjustment disorders which must meet heightened criteria to be diagnosed as cancer-related PTSD (ca-PTSD) (1). Methods: In this pilot survey of Millennials and Generation X cancer survivors, ages 18-35 and 35-50 respectively, we queried based on DSM-V guidelines for basic demographics, illness-related stressors, as well as knowledge of ca-PTSD. We sent an electronic survey to 20 members of a social support group in May 2016. Results: Of the 13 survey respondents, 9 were female and 4 were male. Half of the respondents were from the Generation X and Millennial groups. None were military veterans. 6 were single, 4 were married, and 3 were in stable long term relations. 11 of 13 had a college degree or greater, and all but one had their cancer diagnosed after 2010. Respondents rated illness stressors as: 92% Possible illness progression; 77% Romance and/or reproductive; 77% Job-related; 77% Family dynamics and insecurities; 69% Social interaction insecurities; 69% Physician or Care-provider interactions and insecurities. All were aware of PTSD in general but only 4 reported discussion with a care provider. None recalled being screened for PTSD. Eight were unsure if more emphasis should be placed on ca-PTSD. Conclusions: This cohort further validates the new DSM-V inclusion of illness-adjustment and resultant anxiety to diagnose cancer related stress disorders, narrowing the scope of ca-PTSD diagnosis.With this survey we underline the importance of identifying illness-related stressors utilizing psychological distress monitoring, educating patients on symptoms and prevalence of cancer related stress disorders, and communication with the patient concerning cancer-related stress disorders and ca-PTSD diagnosis.
Transition from active treatment to survivorship care for childhood cancer patients.
Authors: Gowda Madhu S , Mauck Anne G.C , Bitsko Matthew , Morgan Alma , Dillon Robyn , Godder Kamar 
Published: March 2017

34 Background: It has been described that the transition at the end of treatment is a time for relief that the treatment is over but also for fear of recurrence, dealing with the physical sequelae of treatment, reintegration back with friends and with school. To address these concerns we developed a transition program with a goal to provide information, offer educational support and also assess the needs of this group by individual interviews and by measuring stress/anxiety/depression among patients and parents. Methods: Patients who were between 3 months pre and 1 year post end of treatment were enrolled. We conducted 4 educational ‘Forums’, worked with them to develop education plans by individual testing and school meetings were held to implement educational plans. Emotional status was assessed with Questionnaires such as the Revised Anxiety and Depression Scale (RCADS-P), Impact of Events Scale-Revised (IES-R), Brief Symptom Inventory (BSI), and the State Trait Anxiety Scale (STAI-C). Results: We had 7 patients attending the first 2 forums. When it was opened up to those beyond 1 year from the end of treatment, we had about 17 patient/parents that attended each of the subsequent forums. Compared to the numbers attending the forums, there was a higher request for one-to-one testing, individual school meeting, and requests for educational resources (53 school meetings held during that period). We had 38 parents and 21 children that completed the psychological screeners in total. On the RCADS-P, parents most often reported elevated symptoms of depression in their children. Findings showed that very few transition patients endorsed significant anxiety on the STAI-C. On the IES-R and BSI, the parents reported a higher level of anxiety, depression and post-traumatic stress. Conclusions: Patients in the transition phase were less involved in educational forums compared to Long Term survivors, the majority of them seeking one-on-one educational help. We hypothesize that problems become more evident as more time passes from the end of treatment. Also, between the RCAD-S and the BSI in adult survivors, depression seems to be the primary construct rather than anxiety.
Building an embedded primary care survivorship model using an implementation science approach.
Authors: Hahn Erin Elizabeth , Munoz-Plaza Corrine E. , Garcia Delgadillo Jazmine , Schottinger Joanne E. , Brasfield Farah , Gould Michael K , Parry Carla 
Published: March 2017

35 Background: There is limited understanding of factors that affect uptake of different models of survivorship care. Few systems have incorporated implementation science into program planning and implementation. Guided by the Consolidated Framework for Implementation Research (CFIR), we conducted an evaluation of stakeholder-perceived acceptability and feasibility of an embedded primary care provider (PCP) survivorship care model as the initial step of an implementation project within an integrated healthcare system. Methods: We identified clinical, operational, and patient stakeholders and conducted semi-structured qualitative interviews. Interviews were recorded, transcribed, coded, and analyzed. Deductive thematic categories were derived a priori from CFIR domains (e.g., acceptability, culture); thematic sub-categories were developed inductively. Results: We interviewed 12 stakeholders; a diverse array of themes was identified. Acceptability: Oncologists and operational leaders perceived the model to be an acceptable solution to issues of capacity and efficiency with the potential to improve quality; however, several oncologists perceived negative consequences including “[loss of] the joy of medicine”. PCPs perceived difficulty in co-managing existing patient panels and new survivors. Patients were less enthusiastic, fearing the loss of a trusted clinician and wary about the introduction of “[someone] who doesn’t know me.” Feasibility: Organizational confidence was high that this model can succeed, although there was concern about finding the right PCP and investment in training and staff support. Culture: Numerous system-level facilitators were identified, including the integrated structure: “We don’t have a fee for service mentality so nobody’s giving up revenue.” Conclusions: Acceptability and feasibility for this model were high among oncologists and operational leaders but patients were ambivalent. Successful implementation requires training and support of engaged PCPs and staff, and a formalized patient transition introduced early in the care trajectory. Operationalization of survivorship models may be improved with integration of implementation science methods.
Implementing mental health screening, assessment, and navigation program in a community-based survivorship program.
Authors: Howe-Martin Laura , Lawrence Stephanie L. , Jester Bryan , de la Garza Nancy , Benedetto Natalie , Mazour Tracy , Walker Robrina , Jha Manish , Argenbright Keith Edward , Trivedi Madhukar H 
Published: March 2017

36 Background: ASCO guidelines recommend cancer survivors be evaluated, treated, & reassessed for depression & anxiety along the trajectory of care. To meet these guidelines, UT Southwestern Moncrief Cancer Institute instituted an integrated approach to mental health screening, assessment, & navigation called MH-SCAN. (Andersen, BL, Rowland, JH, Somerfield, MR. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation.J Onc Prac, 2015. 11(2): p. 133-134.) Methods: MH-SCAN uses the Vital Sign6 (VS6) program, a web-based application to screen & monitor psychiatric symptoms, and to give feedback regarding measurement-based care (MBC). Measures are repeated at 2-week intervals when possible for those who need treatment. Our implementation process, including training & workflows, will be reviewed. Results: Patients (N = 415) enrolled from 9/1/15 to 8/1/16 in our community-based Survivorship Program (see table) were screened using VS6, of which 119 reported symptoms indicating potential depression. Over 90% of that subset reported moderately severe symptoms and 87% endorsing comorbid symptoms of anxiety. Approximately 60% of the original sample completed reassessment within 4 weeks. Over half continued to endorse significant depressive symptoms, as well as suicidal ideation and comorbid anxiety. Conclusions: Implementing ASCO recommendations for mental health screening, assessment, and treatment adherence, while challenging, is feasible. Our preliminary data underscores its importance among survivors. The MH-SCAN protocol provides a useful approach to implementing screening guidelines efficiently and effectively, thus addressing mental health comorbidities within oncology and primary care.[Table: see text]
An integrative approach to personalized cancer survivorship care at an academic medical center.
Authors: Constine Louis S. , Termer Nancy K. , Holub David , Fung Chunkit , Adams M. Jacob , Dhakal Sughosh , Bruckner Lauren B. , Marsh Bethany , Kerns Sarah L. , Noyes Katia , Williams AnnaLynn , Fritsch Susan , Lustig Carol , Lynch Claire , Nelson Susan , Menchel Heather L. , Sahler Olle Jane , Milano Michael T. , Galka Eva , Shayne Michelle 
Published: March 2017

37 Background: Quality cancer survivorship care has multiple missions 1) develop personalized disease-specific treatment summaries (TS) and evidence-based survivorship plans (SPs), 2) foster recognition amongst Primary Care Providers (PCPs) of the consequences of cancer and its therapy, 3) coordinate care amongst providers, 4) use technology to foster communication and mining data, 5) train residents/fellows, 6) determine knowledge gaps for research, 7) engage community health providers, 8) publicize and raise funds, and 9) develop metrics to assess outcomes. Here we describe initial steps toward these goals. Methods: The University of Rochester Judy DiMarzo Cancer Survivorship program is a multidisciplinary effort across 7 centers involving oncologists, PCPs, social workers, integrated oncology, legal/financial services, and survivors. Survivors are identified at two critical time points: after (1) completion of primary curative therapy = transition visit, (2) discontinuation of routine oncologic follow-up and transition of care to their PCP = shared care visit. These visits are staffed within each cancer discipline. Trainees (15-20/year) probe existing evidence and draft TS/SP templates that are vetted by that cancer discipline. Patient needs are surveyed; institutional and community resources are identified. Results: In 3 years, 1037 patients had survivorship visits - 859 transition visits, 178 shared care visits. Cancers include breast (31%), head & neck (17%), lymphoma (15%), GI (15%), GU (11%), GYN (7%), lung (3%), melanoma and sarcoma (1%) with continuing refinement of systematic patient identification. Visits by year were: 120 in 2013, 266 in 2014, and 470 in 2015. Amongst the 1037 patients, the 6 most common needs were exercise, emotional, return to work, nutrition, financial, and pain. Conclusions: Our program is systematically embracing challenges to deliver evidence-based, individualized TS/SPs for survivors, as well as train future oncology providers in survivorship care. Current areas of focus are better engaging PCPs, ensuring program sustainability, improving technology use to mine data, measuring outcomes, establishing rural outreach, and fostering survivorship research.
Integrating cancer survivorship care into allogeneic BMT recovery.
Authors: Bugos Kelly , Stenger Sarah , Segura Smith Andrea , Johnston Laura , Gross Morgan , Knight Gayla , Lambert Suzanne , Muffly Lori S. 
Published: March 2017

39 Background: AlloBMT patients are at risk for chronic morbidity and late effects. Prior to 2015, the Stanford BMT program conducted group classes at three months post-transplant to prepare alloBMT patients and their families for the transition to survivorship, but no formal cancer survivorship program existed. Cancer survivorship care is required by the Foundation for the Accreditation of Cellular Therapy ( FACT). In order to fill this gap, we developed a standardized pathway to survivorship care for alloBMT survivors. Aim: To implement an initial cancer survivorship care consultation with comprehensive symptom assessment, late effects monitoring, and development of a survivorship care plan (SCP) three to six months after alloBMT. Methods: Standard work was implemented including patient introduction to survivorship by the BMT nurses and Advanced Practice Providers [APP] and during group ‘moving home’ class; responsibility for referral to survivorship; metric tracking, and administration of patient survey. The survivorship visit included an evaluation by the patient’s BMT social worker, introduction to post-BMT nurse coordinator and consult with cancer survivorship APP. Eligible patients were alloBMT recipients receiving care in the outpatient setting. Results: From July 28, 2015 to January 25, 2016, 90% (66/72) of eligible alloBMT patients were referred to cancer survivorship by day 100, 66% (42/66) of referred patient s were seen in survivorship clinic by day 180, 33% (22/66) deferred the visit or were unreachable, 1% (2/66) died. Of the 42 patients who received a cancer survivorship visit, 38% (13/42) responded to a post-visit survey. Responses indicated the patients believed their health goals and needs were addressed, and a SCP in the context of a comprehensive visit was valuable. Conclusions: Integrating standardized cancer survivorship care into the alloBMT recovery period is feasible, satisfactory to patients, and adds a structured approach for long-term effects monitoring and treatment. Early experience and patient surveys demonstrate value in an individual visits 3-6 months after alloBMT with a focus on returning to life and goal oriented post-transplant care.
Patterns of surveillance testing in commercially insured patients with breast cancer across provider types: A regional study.
Authors: Walker Julia Rose , Fedorenko Catherine R. , Greenlee Stuart , Panattoni Laura , Greenwood-Hickman Mikael Anne , Barger Sarah , Kreizenbeck Karma L. , Conklin Ted , Smith Bruce , Blau Sibel , McGee Richard A. , Lyman Gary H. , Ramsey Scott David 
Published: March 2017

4 Background: Oncologists, primary care physicians (PCPs), and other clinicians provide care for breast cancer patients following active treatment. Clinical practice guidelines are largely consistent in recommended number of clinic visits and annual mammograms. However, surveys of oncologists and PCPs have found variation in attitudes toward surveillance intensity, perceptions of care responsibility, and adherence to Choosing Wisely guidelines. This study examined if surveillance of patients with early stage breast cancer varied by whether they obtained follow up care with oncologists, PCPs or both. Methods: Cancer registry records for patients in Western Washington from 2007 to 2015 were linked with claims from two regional commercial insurers. Patients were selected if they had been diagnosed with stage I/II breast cancer and treated with mastectomy or lumpectomy + radiation. The surveillance period starts at the first 4 month gap in treatment (surgery, chemo, radiation) through 13 months from gap start or restart of treatment. Evaluation and Management (E&M) codes for visits and procedure codes for biomarker and advanced imaging (PET, CT, bone scan) were identified in claims. Specialty codes were used to determine type of provider seen. Physician visits were matched to tests using E&M codes in the ± 7 days around each test. Results: During surveillance, 2046 patients averaged 12.2 physician visits per patient [median: 10, IQR: 7-15]. Oncologists (92%) and PCPs (82%) were the most common specialties with an average of 4.0 and 4.2 visits respectively. 73% of patients received mammography (avg # exams = 1.6) , 37% biomarkers (avg = 2.7) and 16% advanced imaging (avg = 1.5). The majority of biomarkers and the largest proportion of advanced imaging occurred near an oncology visit. Conclusions: Patients frequently see oncologists and PCPs during early surveillance. Targeting oncologists for intervention on potentially inappropriate biomarker testing could have the largest impact on aligning practice with Choosing Wisely recommendations. [Table: see text]