bluuebunny/crossref_metadata_2025_split huggingface dataset:
Financial burden among survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.
Authors: Nipp Ryan David , Kirchhoff Anne C. , Fair Douglas Beaty , Kuhlthau Karen , Hyland Kelly , Perez Giselle Katiria , Armstrong Gregory T. , Nathan Paul C. , Oeffinger Kevin C. , Leisenring Wendy M. , Park Elyse R. 
Published: February 2017

233 Background: Cancer diagnosis and treatment can be associated with crippling financial burden, but whether this extends long-term into survivorship is unknown. We sought to examine survivors’ out-of-pocket (OOP) medical costs and their effects. Methods: From May 2011-April 2012, we surveyed a randomly selected sample of cancer survivors from the Childhood Cancer Survivor Study to assess survivors’ 1) financial distress, 2) monetary insecurity and 3) cost-motivated health behavior in the past year. We estimated the proportion of survivors with high OOP costs (≥10% of their annual household income). To determine associations between high OOP costs and the 3 outcomes of financial burden noted above, we used logistic regression to calculate odds ratios (OR) and 95% confidence intervals (CI) for each of the outcomes, adjusting for sex, marital status, insurance, employment and income. Results: Of 1,101 mailed surveys, we received 698 (63% response) with a median age of 39 years (range 25-60) and 31 years from diagnosis (range 23-42). 9.3% (n=54) reported high OOP costs. Survivors with high OOP costs were more likely to report financial distress, monetary insecurity and cost-motivated health behavior. Conclusions: Adult survivors of childhood cancer may experience high OOP costs, resulting in significant financial burden. Our findings suggest that survivors’ OOP burdens not only influence their financial distress and monetary insecurities, but may also negatively impact their health behavior. [Table: see text]
Using clinical algorithms to identify psychosocial distress and other risk factors in cancer survivors.
Authors: Lewis-Patterson Paula A. , Palos Guadalupe R. , Gilmore Katherine Ramsey , Chapman Patricia , Jones Delrose , Bi Weiqi , Rodriguez Maria Alma 
Published: February 2017

242 Background: Late effects, such as pain and fatigue, increase a cancer survivors' risk to psychosocial distress. Assessment and identification of distress and other risk factors can be integrated into survivorship care. Yet, clinical tools and processes needed to coordinate these efforts are severely limited. Here we describe the processes and metrics used to assess and document distress in the survivorship care plans (SCPs) of survivors diagnosed with colon and rectal cancers (CC and RC). Methods: Eligibility criteria for this longitudinal analysis included being: ≥ 18 years, diagnosed with a primary colon/rectal cancer, no evidence of disease ≥ 5 years, seen between 09/01/2011 - 8/31/2014, and alive at time of data abstraction. 117 survivors met these criteria and the first 50 sequential cases were included in this sub-analysis. Data were collected at Visits 1, 2, and 3 within specific time parameters. Data sources included the SCP, electronic medical records (EMRs), and CC/RC algorithms. Variables included demographic/clinical characteristics and standards of care (SOC) elements embedded in the algorithm related to distress, fatigue, pain, and social support. Compliance with SOC were measured using a “yes/no” response format. Results: Of 50 survivors, 58% were diagnosed with CC and 42% with RC. 52% were male, 64% Caucasian, 54% age 65-89 years, and 68% were 5-9 years from diagnosis. 52% of CC survivors were Stage IIIA-C or IV and 57% of RC were Stage 1-IIB. Documentation and metrics for each element indicated a total of 111 visits over the course of the analysis, 59% were CC and 42% RC. Provider's compliance rates (PCRs) were: distress (65%), fatigue (32%), pain (68%), and social support (46%). The pain element was not included in the CC algorithm. PCRs for each element varied by site. Evidence that providers followed algorithms' recommdendations to assess survivors current risk of distress was found in the EMRs, SCPs. Conclusions: We found cancer survivorship clinical algorithms and care plans can guide assessment, documentation, and monitoring of psychosocial assessment. Screening for risk factors to distress in cancer survivors can be done in real time and help identify at-risk survivors during their visit.
Clinical tools to enhance survivorship cancer.
Authors: Gilmore Katherine Ramsey , Palos Guadalupe R. , Lewis-Patterson Paula A. , Chapman Patricia , Jones Delrose , Bi Weiqi , Rodriguez Maria Alma 
Published: February 2017

245 Background: Clear patient-centered recommendations for follow-up and health maintenance is a primary goal of ASCO’s model for survivorship and palliative care. The Commission on Cancer also sought to improve the quality of survivorship care by requiring accredited programs to implement survivorship care plans (SCPs) and treatment summaries by 2015. Our aim is to describe the SCP's components and metrics collected in 12 survivorship clinics of an academic cancer center. Methods: A multidisciplinary team was convened to develop clinical practice tools to guide providers on transitioning patients to a survivorship clinic. These tools were based on 4 IOM's domains: surveillance, risk reduction, late effects management, and emotional function.Algorithms are supported with a Passport Plan for Health (Passport) specifically designed for each disease. These clinical tools allowed clinicians to provide recommendations for each survivor. Tools were electronically available to survivors and their primary care providers. Descriptive statistics were used to summarize metrics in this analysis. Results: To date, 44 cancer-site specific algorithms and 19 Passports have been launched and used by clinicians in 12 survivorship clinics.Metrics collected are: a) number of Passports completed, b) providers’ completion of SCPs, and c) dates with counseling recommendations outlined in the treatment pathways. Since FY08, 25,912 Passports were distributed to 13,105 survivors. In FY14, 6,160 Passports were issued (80.7% provider completion rate). Passport completion varied by provider (7%-97%). Survivors were counseled for recommendations related to colonoscopy (97% of the time), skin screening (98%), mammogram (97%), gynecological screening (95%), and prostate screening (74%). Conclusions: Algorithms and SCPs serve as clinical tools to help providers and survivors manage physical and emotional issues. These tools increase standardization in the delivery of survivorship care, safety, quality, and promote communication among survivors and providers across clinical settings.
Improved clinical trial accrual using a communication tool: Best case/worst case—Clinical trials.
Authors: Campbell Toby Christopher 
Published: February 2017

26 Background: Clinical trials are crucial to the development of new treatments that may improve survival and quality of life for patients. Cancer clinical trials are hampered by chronically low participation rates. A decision support intervention designed to facilitate a shared decision making discussion with cancer patients regarding chemotherapy options could help oncologists align patient preferences with treatment options, including clinical trials. We performed a retrospective chart review comparing lung cancer patients seen in our integrated onco-palliative care clinic (PC) with standard oncology care (SOC) patients for clinical trial participation as a means of assessing potential effectiveness of the tool. The PC clinic is staffed exclusively by the author who also developed the tool. The tool is a combination of a structured discussion paired with a paper diagram the patient takes home which details all the treatment options including best supportive care alone, standard chemotherapy, and a clinical trial. Methods: Charts of every patient seen in our institution with advanced lung cancer from July 2007-June 2011 were reviewed. Eligible patients were those who received any care at our center thus excluding patient seen only for a second opinion. Demographic, treatment details, survival, and hospice utilization data were obtained. There were five oncologists included the SOC group though the vast majority of patients were seen by two providers. All providers (PC and SOC) are academic physicians who work closely together, meet weekly, have clinic on the same day, share the same research staff and have the same promotion requirements. Results: 207 patients with advanced lung cancer were identified, 82 in the PC group. A significantly higher proportion of patients participated in therapeutic clinical trials in the PC group when compared to the SOC group (29% versus 19%, adjusted OR = 2.54, p = 0.014). No difference in overall chemotherapy utilization was seen between the groups. Conclusions: Our chart review provides initial evidence that the best case/worst case: clinical trials tool may help facilitate clinical trial participation in patients with advanced lung cancer who are exploring their options.
When patients decide to stop chemotherapy and choose symptom-focused care: Patients’ perspective and concerns.
Authors: Fridman Ilona , Nikolova Tanya , Glare Paul A. , Higgins E. Tory 
Published: February 2017

28 Background: Patients often continue chemotherapy at the end of life, decreasing their quality of life without prolonging survival. Because humans tend to make emotional choices rather than rational ones when considering unpleasant options, patients are likely to reject hospice and other forms of symptom-focused care (SFC) when it could be beneficial for them. We explored patients’ perspectives on how they choose between continuing cancer treatment and SFC. Methods: Semi-structured interviews with 20 patients recruited from palliative care clinics at Memorial Sloan Kettering Cancer Center (MSKCC). Interviews covered patients’ decision-making process regarding further chemotherapy vs. SFC. Interviewees gave verbal consent, the MSKCC Institutional Review Board granting a waiver. Results: Two key conditions were identified as necessary for patients to choose SFC. First, the patient accepts that further chemotherapy is not going to be beneficial to them. Second, the oncologist endorses the transition to SFC. Preliminary analysis of treatment choices at the time of interview (see Table) also found many of those who expected they would benefit from further treatment experienced negative emotions when SFC was recommended. Conclusions: These data confirm the importance of raising prognostic awareness, and endorsing hospice. Further research should focus on developing communication techniques to recommend SFC in a way that helps patients who continue to want more treatment to calmly understand and consider carefully the advice being offered, rather than simply disliking it and quickly rejecting it. [Table: see text]
Factors that influence oncologists' decisions about administering late chemotherapy.
Authors: Bluhm Minnie , Connell Cathleen M. , Bickel Kathleen Elizabeth , Silveira Maria 
Published: February 2017

31 Background: An estimated 20-50% of incurable cancer patients receive chemotherapy in the last 30 days of life, although there is little data to support this practice. Continued use of chemotherapy typically precludes hospice enrollment. It may also result in more symptoms, increased use of aggressive treatments, and worsening quality of life. Despite this, few studies have explored oncologists' rationales for administering chemotherapy during the last weeks of life. The purpose of this study is to examine factors that oncologists report influence their decisions about late chemotherapy. Methods: In-depth individual interviews were conducted with 17 oncologists using a semi-structured interview guide. Interviews were audio-recorded and transcribed verbatim. Transcripts were coded and content analyzed for themes and patterns in the data. Results: Participants reported three key findings. 1) Clinical factors drive oncologists’ late chemotherapy decisions when they point to clear treatment choices, along with patient preferences. When clinical factors are ambiguous, non-clinical factors become more salient. 2) Late chemotherapy is patient-driven. It is used to palliate physical and emotional symptoms and maintain patient hope, even when physical benefit is not expected. 3) Caring for dying patients is difficult and impacts oncologists and their treatment decisions. Difficulties that are cited as influences favoring treatment include: emotional exhaustion, difficulty communicating about stopping or not starting chemotherapy, an overwhelming sense of responsibility for life and death, feeling badly about the limits of oncology to heal, and prognostic uncertainty. Conclusions: Findings reveal a nuanced understanding of why it can be so difficult for oncologists to refuse chemotherapy treatment to patients near death. Doing so adds to the existing burden of caring for dying patients. This means that at times, oncologists prescribe chemotherapy to simply help everyone feel better, regardless of expected clinical benefits or costs. Future work is needed on the impact of caring for dying patients on oncologists and on supportive interventions that assist them in making optimal treatment decisions.
Structured outpatient palliative care family conferences to enhance early integration of palliative care in advanced cancer.
Authors: Santhosh-Kumar Cheruppolil R. , Gray Deborah , Struve Stephanie , Huibregtse Carol 
Published: February 2017

36 Background: Integrating early palliative care with cancer treatment improves quality of life and survival. Effective communication among physicians, patients and their loved ones is crucial to end-of-life, hospice and palliative care discussions. To address the inherent challenges in these discussions, we implemented a structured outpatient palliative care family conference (OFC) program at our community cancer clinic. Methods: A team comprising a hematologist/oncologist, cancer nurse navigator and social worker developed a toolkit for conducting an OFC, recognizing that each family conference is a unique adaptive challenge. New patients with advanced malignancies and limited life expectancy (<12 months) were offered a 90-minute structured OFC attended by the care team, patient and family members and or friends. Pre and post-conference patient satisfaction surveys and other data were collected prospectively. Results: From March 2014 through May 2015, fortyOFC were conducted (16 female and 24 male patients, median age: 67 years). Diagnoses were advanced gastrointestinal (14), lung (12), hematologic (6) and other (8) malignancies. As a direct result of the OFC program, 18 patients ordered do-not-resuscitate bracelets, 15 completed advanced directives, 7 submitted paperwork for disabled parking permits, 7 were referred to hospice and 4 for rehabilitation therapy. Further results are shown in the table. Conclusions: Structured outpatient palliative care family conferences improve satisfaction of end-of-life discussions and facilitate integration of palliative care options. Enhanced communication between providers, patients and loved ones eases the challenges of such discussions. The OFC approach could be a model for integrating palliative care in community cancer clinics. [Table: see text]
Mind-body medicine epigenetic technique (MET) and EGR1 (zif268) gene expression.
Authors: Munoz Francisco Ventura 
Published: February 2017

4 Background: This is a pilot study update on the potential of MET to up-regulate EGR1 gene expression in patients diagnosed with breast cancer. EGR1 gene expression is associated with learning and memory. Methods: The selection process for the study participants was nonrandom. The following was the eligibility criteria. 1. Inclusion Criteria: Breast Cancer, Stages II, III 2. Exclusion Criteria: Cognitively impaired, weak or ill. The study utilized two groups. Each group was assigned two research participants. Group One received one session of MET. Group Two received two sessions of MET. Each MET session was approximately 25-35 minutes in duration. Blood samples were taken at baseline and post-MET sessions to provide evidence in gene expression changes. For Group Two, the post-MET session blood draw was done 7 days after baseline. 1. Primary Endpoint: To determine whether MET can up-regulate EGR1 gene expression. 2. Secondary Endpoint: To determine whether there is a correlation between up-regulated EGR1 gene expression with up-regulated TP53 and TP53AIP1 gene expression. The blood samples were sent to genomics labs at the Childrens Hospital of Los Angeles and the University of Nevada Las Vegas for mRNA extraction and microarray analysis. The gene expression was measured by DNA microarray results using the “PrimeView gene chip” and “Partek Genomics Suite” statistical software. Results: For two participants in Group 1 and one participant in Group 2, there was biologically significant up-regulation in EGR1 gene expression. However, only one participant from Group 1 evidenced a biologically significant up-regulation of EGR1 gene expression along with a biologically significant up-regulation of TP53 and TP53AIP1 gene expression. One major limitation of these findings is the statistical insignificance of the results due to the small number of participants. Conclusions: This pilot study evidenced the up-regulation of EGR1 gene expression potentially due to MET and provided evidence for potential correlation between EGR1, TP53 and TP53AIP1 gene expression. TP53 and TP53AIP1 gene expression are known to induce apoptosis. This study also provided a foundation for a larger study with more participants.
Inpatient care at the end of life: A closer look.
Authors: Wiesenthal Alison , Lucca Bianchi Anabella , Dave Vinnidhy , Sidlow Robert , Seo Susan , Korenstein Deborah 
Published: February 2017

43 Background: Goals of care discussions in the inpatient setting often focus on the limitation of cardiopulmonary resuscitation and Allow Natural Death (AND) directives; decisions regarding medication administration and further diagnostic studies may be missing from the conversation. De-prescribing at the end of life (EOL) can be emotionally complex for patients and their families, though data is emerging that quality of life may be enhanced by limiting unnecessary medications. Our study assessed care in the last 3 days of life for cancer patients who die in hospital. Methods: Retrospective chart review of all inpatient deaths at a tertiary cancer center between 12/1/2012 and 11/30/2014. The frequency of lab draws, administered medications, and subspecialty consultations during the last 3 days of life were recorded. Results: Of the 1,311 inpatient deaths during the two year study period, 44% had Palliative Medicine consultation. On average, Palliative Medicine was consulted 6.5 days before death, with a median consultation time of 3 days before death. Do not resuscitate (DNR) orders were active for over 80% of patients at the time of death, with an average DNR enacted 4.6 days prior to death (range 0-60 days). Medications most often provided at the end of life were analgesics, fluids, and antibiotics (See Table 1). Consistent with Quality Oncology Practice Initiative (QOPI) Measures, <1% of patients were treated with chemotherapy in the last 3 days of life. Most patients (85%) had laboratory tests in their final 3 days of life, with a mean of 21 orders per patient. Conclusions: Non-palliative services are often provided to hospitalized patients at the end of life. Careful consideration must be given to the potential benefits and harms of medical interventions at the EOL to improve quality of life for the dying patient. Further research is needed to understand the drivers behind the care provided at EOL to inform educational tools for clinicians. [Table: see text]
Impact of pancreatic cancer treatment on hospice utilization.
Authors: Wancata Lauren M , Yin Huiying , Wong Sandra L. 
Published: February 2017

52 Background: There is an increasing incidence of pancreatic cancer over time, a cancer with a 5-year survival rate of only 7.2%.For patients with poor prognosis cancers, hospice is an important resource, but it is often not utilized or underutilized. Factors influencing hospice use are difficult to determine. We sought to evaluate the impact of pancreatic cancer treatment on hospice utilization. Methods: National Surveillance Epidemiology and End Results (SEER)-Medicare data was utilized to identify all incident cases of pancreatic cancer patients who died (2005-09, with follow up to 2011). Patients were stratified by primary treatment strategy: surgery, chemotherapy, or no treatment. Hospice utilization in the last 6 months of life, including average and median days enrolled in hospice and average time from diagnosis to hospice was evaluated. Results: 17,031 patients were identified, with 68.5% enrolling in hospice in the last 6 months of life. Patients undergoing surgery were less likely to enroll in hospice compared to patients not undergoing surgery (58.7% vs 69.4%, p < 0.0001). Interestingly, surgical patients spent on average 31.2 days in hospice (median 15.0 days) which was comparable to the non-surgical cohort (average 32.7 days, median 16.0 days; p = 0.32). Patients who received any chemotherapy spent an average of 29.2 days in hospice (median 15 days) compared to those who did not undergo chemotherapy, who spent an average of 34.5 days in hospice (median 16 days); p < 0.0001. While total hospice enrollment was equivalent between the chemotherapy and no chemotherapy cohorts (67.5% vs 69.1%), the time spent in hospice was significantly different (p < 0.0001). Patients not receiving any cancer-directed treatment enrolled in hospice at an average of 78.6 days (median 32 days) from diagnosis. Conclusions: Pancreatic cancer patients undergoing surgery enrolled in hospice to a much lesser extent than patients who did not have surgery. Patients not receiving cancer-directed treatment spend a relatively short time in hospice. Overall, hospice appears to be underutilized, and the majority of patients with this poor prognosis cancer are not realizing the full benefits of hospice.
Increased symptom expression among patients (PTS) with delirium admitted to an acute palliative care unit (APCU).
Authors: De la Cruz Maxine Grace , Yennu Sriram , Liu Diane D , Wu Jimin , Reddy Akhila Sunkepally , Bruera Eduardo 
Published: February 2017

56 Background: Previous case reports found that delirium-induced disinhibition may lead to overexpression of symptoms. Our aim was to determine the effect of delirium on the reporting of symptom severity in pts with advanced cancer. Methods: We reviewed 329 consecutive pts admitted to the APCU without a diagnosis of delirium from Jan 2011-Dec 2011. Demographics, Memorial Delirium Assessment Scale (MDAS), ECOG, Edmonton Symptom Assessment Scale (ESAS) on 2 time points were collected. Pts who developed delirium and those who did not develop delirium during the entire course of admission were compared using Chi-Squared test and Wilcoxon rank-sum test. Paired t-test was used to assess if the change of ESAS from baseline to follow-up was associated with delirium. Results: 96/329 (29%) of pts developed delirium during their admission to the APCU. The median time to delirium was 2 days. There was no difference in the length of stay in the APCU for both groups. Table 1 shows the changes in the ESAS scores of the two groups from baseline to follow-up. Pts who did not have delirium expressed improvement in all their symptoms while those who developed delirium during the hospitalization showed no improvement in physical symptoms and worsening in depression, anxiety, appetite and wellbeing. Conclusions: Pts with delirium reported no improvement or worsening symptoms as compared to pts without delirium. Screening for delirium is important in pts who continue to report worsening symptoms despite appropriate management. [Table: see text]