bluuebunny/crossref_metadata_2025_split huggingface dataset:
The benefits of patient-centered patient registries.
Authors: Durborow Michelle , Aljallad Kathrena , Call Jerry , Menos Mildred , Scherzer Norman J. 
Published: September 2018

e21625 Background: Created in 2001, The Lift Raft Group GIST Patient Registry has always put the patient at the heart of its work. Those contributing data are not merely study participants but people in need of help. In 2017, the newest evolution of the Registry debuts- GIST/PRIME, an interactive desktop/mobile application that serves both the patient and doctor to track treatment efficacy and disease progression over time rather than the traditional single survey input. Methods: The Registry operates on an SQL cloud based platform under an IRB informed consent process. Incoming members provide their full disease history. Examples of data collected include: Demographic, primary tumor site, date(s) of diagnosis, initiation of treatment, dosage, and response to treatment. Outcomes are based upon response to drug therapy. Research analysis is supported by the platform’s filterable, queryable and auto-calculating fields as well as unique features such as treatment lines which chart therapy history to investigate potential correlation between mutational status, drug treatment and order of drug taken. Results: The traditional registry structure only provides a one-way benefit- from patient to registry. GIST/PRIME seeks to remedy this by providing a clear set of benefits and user-friendly features back to patients: The Dashboard displays Registry demographics and how the patient relates others within the system. Based on entered data, this dashboard can also calculate Risk of Recurrence and provide education on treatment and mutational types; Input and editing of Diagnosis, Evaluation and Treatment; push notifications; The GISTORY- An exportable, printable document that provides a comprehensive summary of a patient’s GIST medical history, helping facilitate efficient communication between patient and doctor. Conclusions: The idea of reframing a patient registry as a tool which can provide as much benefit to its members as it does to the researchers who analyze its data is overdue. By committing to a patient-centered structure and style, registry members are more deeply engaged over time, providing richer data that is not limited to a single drug or place of treatment.
Clinical outcome and characteristics of patients with cervical cancer submitted to renal replacement therapy.
Authors: Reis Diego , Rocha Eduardo , Ishida Tatiane Cristine 
Published: September 2018

e21627 Background: Cervical cancer is the 2nd most prevalent and 4th cause of cancer-related death in Brazil among women. It may cause renal failure due to tumoral growth, the treatments, among other causes. Purpose: To evaluate the clinical outcome and the risk of death in patients with cervical cancer hospitalized submitted to hemodialysis, to describe the clinical characteristics of these patients. Methods: Retrospective observational study. Patients diagnosed with cervical cancer, hospitalized, submitted to renal replacement therapy were identified in a single institution (n = 92). Risk of death was estimated using Kaplan-Meier analysis. The Cox proportional hazards regression model was used to determine the risk of death on the basis of: cancer staging, disease activity, Performance status at admission, oncological surgery before hemodialysis subgroup. Results: 92 patients with cervical cancer hospitalized were submitted to intermittent hemodialysis between January 2007 and December 2008. Data was available for all the 92 patients. Median age at diagnosis 47.8 years (25.4-95.1), 73.9% was diagnosed stage III/IV, 95% had disease progression/ active disease before hemodialysis. 84 patients (91%) were dead at the moment of analysis (Cut-off date 30/03/2010), median interval between first hemodialysis and death 1.1 months (0-24.8). The main cause of death was postrenal kidney failure (82.6%). In multivariate analysis, stage II/III/IV (compared with stage I) and disease progression/active disease were the only independent prognostic factors associated with increased risk of death (HR = 3.149; 95% CI, 1.765 to 5.610; P = .001 and HR = 4.205; 95% CI, 1.002 to 17.65; P = .05). Conclusions: Women with advanced disease and active disease/ disease progression have a significant increased risk of death compared with those with stage I, stable disease/ disease in remission. Prospective studies are warranted to investigate the benefit hemodialysis in patients with cervical cancer.
A novel integrative medicine educational program for radiation oncology patients: Feasibility and patient-reported outcomes.
Authors: Fakhoury Kareem , Stavas Mark J. 
Published: September 2018

e21629 Background: Integrative medicine uses complementary health approaches (CHAs) to improve wellness. Many patients use CHAs to manage acute and late toxicities of radiotherapy (RT). However, few patients disclose CHA use to their radiation oncologist. Patients acknowledge a need for improved education on CHAs and have shown interest in attending a hospital-based educational program. Here we assess the feasibility of implementing such a program and the associated patient-reported outcomes, including intention to disclose CHA use and patient satisfaction. Methods: A structured curriculum was designed as a collaboration between an academic institution’s integrative medicine center and radiation oncology department. Four one-hour lectures covered topics of meditation, yoga, massage therapy, and nutrition, each led by a topic expert. Lectures included didactic and interactive components. Individuals over age 18 and actively receiving RT were recruited by nurses, radiation therapists, and a designated study team member in the waiting room. Pre- and post-lecture surveys were used to assess patient characteristics, CHA use disclosure, satisfaction, and qualitative feedback. Results: 43 surveys were completed. The patient sample was 47% female, median age 63. The majority had breast or prostate cancer (60%). Of about 100 patients receiving RT each day, 5 to 7 attended each lecture. 36% of participants had disclosed their use of CHAs before the lecture; 67% intended to disclose their use after the lecture. 98% felt the lecture enhanced their patient experience with a median agreement of 8 on a 9-point Likert scale. Conclusions: This program is the first to increase satisfaction and CHA use disclosure. Patients expressed interest in learning simple, convenient, and effective tools to abate acute toxicities, rather than focus on chronic symptoms of remission and recovery. However, patient recruitment could not be effectively integrated into the clinical workflow. Attendance was limited by timing, transportation, and performance status. To increase reach and minimize cost, we suggest investigating a program that is integrated into the clinic visit or available in an online format.
Pre-injection wheel running preserves mobility in a rodent model of paclitaxel neurotoxicity.
Authors: Hile Elizabeth , Kostereva Nataliya , Marra Kacey 
Published: September 2018

e21640 Background: Peripheral neurotoxicity (PN), a common side-effect of paclitaxel (Ptx) chemotherapy, can reduce quality of life through persistent balance/gait dysfunction, and even shorten survival by limiting therapy. Exercise before chemo, or ‘prehabilitation’ (prehab), seems to protect cardiac and cognitive function, but few have studied mobility, or identified gait parameters most sensitive to PN, to inform larger neuroprotection work. Aims of this preclinical, proof of concept pilot were to identify 1) if pre-Ptx wheel running preserves mobility, 2) key gait parameters for the Ptx-PN phenotype, 3) potential mechanisms for prehab neuroprotection. Methods: Adult female Lewis rats were randomized to 3 arms under equivalent housing: sedentary before injection of vehicle (SedSham), sedentary before 36 mg/kg Ptx (SedPtx), or prehab wheel running 60 min, 5 days/wk X 5 wks pre-Ptx (ExPtx). Outcomes were blinded mobility observation and DigiGait spatiotemporal parameters at baseline, before & after injection, and at euthanasia, with peripheral nerves (sural, sciatic, tibial, fibular) harvested for immunohistochemistry and quantitative histomorphometry with GAP43 (neuroplasticity) & S100 (Schwann) antibodies. Consistent with small pilot design, analyses were primarily descriptive comparisons. Results: A single blinded assessor correctly identified group assignment for 7 of 8 (87.5%) videotaped rats by post-injection mobility observation alone, identifying slowness, frequent paw contact/ reduced forepaw exploration, and flattened paws as Ptx-PN phenotype. Paw changes were confirmed by post-hoc Digigait image comparison. 'Percent propulsion' emerged as a key gait parameter in sensitivity analysis with a prehab non-responder. Levels of S100 appear lower in SedPtx group nerves compared to ExPtx and SedSham animals. Conclusions: Mobility deficits after Ptx are often attributed to peripheral somatosensory changes rather than neuromotor dysfunction, yet these preclinical results echo our growing anecdotal clinical observations. While preliminary, both suggest greater attention to distal strength and motor function after Ptx exposure.
Symptoms and health related quality of life in patients receiving matched therapy.
Authors: Williams Kirstin Anne , Williams Casey B. , Rojas Luis , Starks David , Krie Amy K. , Leyland-Jones Brian , Bergquist-Beringer Sandra 
Published: September 2018

e21648 Background: Genomic sequencing is increasingly being used to select targeted agents that are matched to molecular alterations. Potential differences in symptom occurrence and severity as well as health related quality of life (HRQOL) between patients who receive matched therapy and those who do not receive matched therapy have not been previously explored. Methods: Existing data from the records of patients with breast or gynecologic cancer receiving outpatient care were used for this descriptive correlational research study. Descriptive statistics and multiple linear regression analyses were performed to address the study aims. Symptom occurrence and severity and HRQOL were measured with the previously validated Therapy-Related Symptom Checklist (TRSC) and HRQOL – Linear Analogue Self Assessment (HRQOL-LASA) respectively. A higher total TRSC score indicated high symptom occurrence and severity; a higher total HRQOL-LASA score indicated a high quality of life. Results: Patients receiving matched therapy had lower mean TRSC scores ( M= 14.7, SD= 10.1) compared to patients receiving not matched therapy ( M= 16.1, SD= 11.6). Patients receiving matched therapy had higher mean HRQOL-LASA scores ( M= 48.1, SD = 7.5), compared to patients receiving not matched therapy ( M= 45.4, SD= 9.1). Mean ratings were higher for patients receiving matched therapy on each individual HRQOL domain. Therapy type (matched, not matched) was not significantly associated with TRSC scores (B = -3.0, p= 0.18) or HRQOL scores (B = 2.0, p= 0.18) after controlling for person and disease factors. Conclusions: On average, patients receiving matched therapy had lower symptom occurrence and severity scores and higher HRQOL scores when compared to patients who were not receiving matched therapy. Type of therapy (matched, not matched) was not significantly associated with symptom or HRQOL scores. Study findings provide initial data about the symptom experience and HRQOL and for patients receiving matched therapy.
Differences in global toxicity burden among patients and care providers during initial chemotherapy for breast cancer.
Authors: Rowland John Christopher , Hershman Dawn L. , Kalinsky Kevin , Crew Katherine D. , Cheung Ying Kuen , Lee Shing Mirn 
Published: September 2018

e21649 Background: To better assess the safety of new drugs in cancer clinical trials, a measure of the overall toxicity burden is essential. We propose a novel tool for eliciting an overall toxicity burden score from physicians, nurses and patients, and compare these scores at baseline and after initial chemotherapy. Methods: Sixty patients starting therapy for breast cancer were enrolled prospectively from 2013 to 2015. Before and after starting therapy (cycle 2 day 1), a global toxicity burden score (TBS) was elicited from each patient using a scale from 0 to 10 based on the burden of their disease and therapy on their daily life, with 10 indicating more burden. After toxicities were collected using the National Cancer Institute Common Terminology Criteria for Adverse Events (CTCAE), the treating physician and nurse completed an identical questionnaire independently. Baseline TBS, and pre- and post-treatment differences in TBS, number of CTCAE reported and overall health from the EORTC QLQ-C30 (higher indicating better health) were compared using paired t-tests. Results:Out of the 59 evaluable patients, the average age was 54 years, 1 was male, 55% were white, 41% Hispanic, 16% stage III or IV, and 59% received adjuvant therapy. Patients reported higher TBS at baseline compared to clinicians (mean (SD): patients = 3.10 (2.78), nurses = 1.26 (1.55), physicians = 0.90 (1.33); p < 0.001). Moreover, while post-treatment patient reported outcomes were worse, they were not significantly different (mean difference (SD): TBS = 0.27 (2.74) p = 0.48; overall health status = -5.13 (21.53) p = 0.09). However, the number of toxicities and clinicians’ TBS increased significantly post-treatment (mean difference (SD): number of toxicities = 3.61 (2.71) p < 0.001; physicians = 1.65 (1.47) p < 0.001; nurses = 1.58 (1.41) p < 0.001). Conclusions: The proposed tool for eliciting overall toxicity burden is simple and suggests that clinicians underestimate disease burden at baseline, and while the increase in number of toxicities after treatment is reflected in increased clinician reported burden, it is less apparent in patient reported outcomes. Future research should evaluate new measures of burden and toxicities over time.
Partial splenic embolization in chemotherapy-induced thrombocytopenia: A retrospective analysis with long term follow-up.
Authors: Procaccio Letizia , Schirripa Marta , Bergamo Francesca , Dadduzio Vincenzo , Finotto Silvia , Menichetti Alice , Ziampiri Stamatia , Carandina Riccardo , Loupakis Fotios , Lonardi Sara , Zagonel Vittorina , Aliberti Camillo 
Published: September 2018

e21654 Background: Chemotherapy-induced thrombocytopenia (CIT) may result in a chemotherapy (CT) dose delay or reduction, thus affecting dose density and intensity. Historically, partial splenic embolization (PSE) has been performed to improve hematologic parameters related to hypersplenism. In this study we reviewed our institutional experience with PSE for gastrointestinal cancer (GI) experiencing CIT. Methods: A retrospective analysis of GI cancer patients with splenomegaly undergoing PSE was performed. Mean PLT (platelet) count was collected at the following time points: before CT start; at nadir pre-PSE; 1 week before PSE (pre-PSE); 4 weeks after PSE (post-PSE); and at the nadir after CT reintroduction post PSE. Time to CT restart after PSE, time to recurrent CIT, periprocedural lab values and adverse events were recorded. Wilcoxon test was adopted to exploratively compare PLT count before and after PSE. Results: 11 patients underwent PSE, 5 with colorectal, 3 with pancreatic and 3 with biliary cancer, 73% had metastatic disease. Baseline PLT count before initiation of CT was 146 x109/L (range, 81-255 x 109/L). PLT count at nadir pre-PSE was 60 x109/L (range, 44-82 x 109/L), and pre-PSE PLT count was 78 x109/L (range, 62-99 x 109/L). Post-PSE PLT count improved significantly ( 132 x 109/L; range, 67-172 x109/L) compared with nadir pre-PSE (p = 0.003). The mean hospital stay was 1 day. Post-procedure abdominal pain occurred in 3 patients. All patients resumed CT and mean time to CT re-start after PSE was 43 days (range, 4-193 d). All patients exhibited recurrent thrombocytopenia. PLT count at nadir after PSE was 54 x 109/L (range, 28-78 x 109/L) and occurred at a mean of 169 days after PSE (range, 37-664 d) No differences were observed when comparing CIT at nadir pre and post PSE (p = 0.447). All patients experienced CT dose delay and 82% of them experienced dose reduction after PSE. Conclusions: Our findings underline that PSE is safe and effective to achieve short-term improvement of CIT and resumption of CT in GI patients. However, PSE does not sustain long-term adequate PLT count. Further studies may help guide patient selection by identifying characteristics that allow a sustained improvement in CIT.
Effectiveness and safety of LMWH treatment in patients with cancer diagnosed with nonhigh-risk venous thromboembolism (VTE): Results of the Turkish observational study (TREBECA).
Authors: Ozaslan Ersin , Ozkan Metin , Cicin Irfan , Benekli Mustafa , Kocer Murat , Uysal Mukremin , Oksuzoglu Berna , Isikdogan Abdurrahman , Cubukcu Erdem , Elkiran Emin Tamer , Dane Faysal , Aliustaoglu Mehmet , Sevinc Alper , Karaoglu Aziz , Ulas Arife , Dogu Gamze Gokoz 
Published: September 2018

e21656 Background: Venous thromboembolism (VTE) is one of the most important causes of death in cancer patients, with VTE risk being 4-7 times higher among these patients compared to normal population. TREBECA is an observational study on cancer outpatients with low risk VTE treated with LMWH. Methods: Patients were treated by medical oncologists in Turkey at 15 sites, where they were enrolled and followed-up for a period of 12 months. Each center used their own treatment protocol. Primary endpoints were efficacy and the time to a change inVTE status (dissolution of thrombosis). The doses of LMWHs have been calculated according to patients’ body weights based on the dosage scheme and administered subcutaneously once or twice daily. Results: Data for 250 patients who met the study inclusion criteria were examined and analyzed. Of the included patients; 239 patients (95.6%) completed their Day 15 visit, 176 (70.4%) completed their Month 3 visit, 130 (52.0%) completed their Month 6 visit, and 91 (36.4%) completed the entire study. The mean age of the patients was 60.2 ± 13.7, while 53.2% (n = 133) of the patients were women. Colorectal (21.2%), lung (16.8%) and breast (14.8%) cancers were the most common forms of cancer. One hundred thirty-three patients were treated with enoxaparin, 112 patients were treated with bemiparin and 5 patients were treated with tinzaparin. Bemiparin resulted thrombosis resolution in more patients than enoxaparin, during day 15, month 3 and month 6 visits (table 1; p < 0.05). Conclusions: The observation that bemiparin is more effective in resolution of thrombosis was noteworthy. Thrombosis could not be effectively treated within the first 15 days in a significant number of patients, but could effectively be treated in most patients by Month 3. We can conclude that a treatment of at least 3 months is appropriate for cancer patients, even among those who are at low risk for venous thromboembolism. [Table: see text]
Does oncologist productivity impact goals of care discussions?
Authors: Pintova Sofya , Smith Cardinale B. , Adelson Kerin B. , Gonsky Jason Parker , Egorova Natalia , Franco Rebeca , Bickell Nina A. 
Published: September 2018

e21675 Background: Oncologists are pressed to care for higher volumes of advanced cancer patients. Interviews with oncologists revealed their concern that goals of care (GoC) discussions take time. We studied the impact of oncologists’ productivity on their conduct of meaningful GOC discussions with patients. Methods: At academic, municipal and rural hospitals, we recruited & randomized solid tumor oncologists & their newly diagnosed advanced cancer patients with <2 year prognosis to participate in a RCT testing a coaching model of communication skills training. All oncologists were encouraged to have GoC discussions at the visit after imaging to restage. Patients are surveyed after that post-imaging visit. We define GoC discussions as patient report that their doctor talked about preferences for cancer treatment and clarified things most important to them given their illness. We measure quality of GoC discussions by patients’ rating. Productivity was measured by work revenue value units (wRVUs) per hour for the day each oncologist saw the study patient post-imaging. Results: We enrolled 22/25 oncologists (88%); to date 77 patients completed surveys. Productivity did not vary significantly by hospital though oncologists generated greater wRVUs at the municipal hospital (p=0.2203). Overall, 36% of patients report having a high quality GoC discussion. There was no significant relationship between level of productivity and conduct of high quality GoC discussion. Multivariate model controlling for hospital and intervention found no relationship between productivity and conduct of high quality GoC discussion. Conclusions: Despite concerns about the time required to conduct GoC discussions, we found that productivity did not affect oncologists’ ability to conduct high quality GoC discussions nor did conduct of a GoC reduce productivity. The prevalence of high quality GoC discussions was low. [Table: see text]
Supportive care and symptom burden in patients with myeloproliferative neoplasms.
Authors: Gowin Krisstina L. , Millstine Denise , Kosiorek Heidi E. , Langlais Blake , Huberty Jennifer , Eckert Ryan , Mesa Ruben A. 
Published: September 2018

e21684 Background: Pharmacologic therapy stabilizes hematologic counts and splenomegaly in myeloproliferative neoplasms (MPN), however only partial symptom improvement typically occurs. Evidenced-based supportive care interventions are needed, however data is limited in patients with MPNs. Methods: Patients were recruited internationally via social media. Informed consent and online self-report surveys (Qualtrics) were completed capturing patient demographics, disease specific data, supportive care utilization, and symptom burden via MPN-SAF TSS. ANOVA, chi square tests, and Wilcoxon rank sum tests methods were applied. Results: Patients:1087 patient surveys were consented. Of these, 858 had 10 or more responses. There were 338 essential thrombocytosis (ET), 188 myelofibrosis (MF), 315 polycythemia vera (PV), and 17 other. In MF: DIPSS risk categories included low (8%), Int-1 (19%), Int-2 (29%), high (12%), and unknown (32%). Supportive care:The most frequently utilized therapies were aerobic activity in 442 patients (51.5%), massage in 244 (28.4%), yoga in 220(25.6%), nutrition in 216 (25.1%), and strength training in 204 (23.7%). Symptom association: Among all respondents, aerobic activity (p=<0.001), massage (p=<0.001), yoga (p=0.02), and strength training (p=<0.001) was associated with lower symptom burden by the MPN-SAF TSS however, nutrition was not (p=0.10). In ET and PV subgroups, yoga intervention was no longer statistically significant (p=0.35, p=0.14). In the MF subgroup, no intervention was found to be significant in any risk category. Conclusions: Supportive care with aerobic activity, massage, yoga, and strength training is associated with improved symptom burden in patients with MPN. Further studies are needed to understand the benefits of such therapies. [Table: see text]