bluuebunny/crossref_metadata_2025_split huggingface dataset:
A patient-derived conceptual framework of lung cancer care priorities.
Authors: Mujumdar Urvi , Lanzarini Victoria , Lowe Maria , Bolinder Bjorn , Doleh Yunes 
Published: September 2018

206 Background: Patient-centric healthcare delivery, where patients are the ultimate decision-makers, warrants care evaluated based on patient priorities. A heterogeneous lung cancer patient population fosters variation in care priorities. This study identified care concept domains in a wholly patient-driven manner. Methods: Group concept mapping was used to assess priorities among patients invited from the PatientsLikeMe online community aged ≥18, US residents, and self-reporting lung cancer. In Phase I, 26 patients generated ideas based on the focus prompt: “ What do you want to achieve when it comes to the treatment you are receiving or are considering receiving for your lung cancer?”. 78 ideas were generated over 2 weeks. Supplementation from literature, editing for relatability, independence, and consistency yielded 78 concepts. In Phase II 67 patients used CSGlobalMax® (Concept Systems, 2018) to rate the concepts for importance (1 = not important to 5 = very important); 64 of which grouped and named the ideas into categories of unrestricted size. Multidimensional scaling and hierarchical cluster analysis generated visual maps, average importance, and categorized concept domains. Domains were compared across all patients and by treatment experience (≤1 or > 1 systemic regimens) and stage at diagnosis. Results: Patients were female (78%), white (93%), and mean age of 62 (SD 8.9). 93% reported non-small cell lung cancer, 70% reported Stage III or IV diagnosis, and 58% were classified as early in treatment experience. 11 unique domains were visually represented. In order of average importance the domains were: managing lifestyle (4.52), care team quality, active participation in treatment, treatment goals, treatment options, side effects, social well-being, physical well-being, future options, fulfillment in daily living, and supportive environment (4.01). There was strong correlation between treatment subgroups (r = 0.89), although relative importance of domains shifted. Generalizability is limited. Conclusions: In this patient-driven research approach, patients developed the focus prompt, generated ideas, and structured concepts. The unique domains may help evaluate care value in patient-centric healthcare delivery.
Should we be talking about guidelines with patients? A qualitative analysis in metastatic breast cancer.
Authors: Rocque Gabrielle Betty , Wallace Audrey S. , Niranjan Soumya J. , Williams Beverly R , Turkman Yasemin E. , Ingram Stacey A. , Williams Courtney , Rasool Aysha , Forero-Torres Andres , Bhatia Smita , Knight Sara J. 
Published: September 2018

217 Background: Little data exist on patient perceptions of guideline-based care. This qualitative analysis describes patient and oncologist views on the value of discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. Methods: In-person interviews completed by MBC patients and community medical oncologists and focus groups for academic medical oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. Results: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. The majority of patients (80%) were unfamiliar with the term “guidelines”. However, all patients desired to know if they were receiving guideline discordant treatment. As one patient commented “ I'm supposed to know the guidelines and it's not supposed to be a secret to me.” Among patients willing to receive care inconsistent with guidelines, several themes emerged including trusting the oncologist, relying on the oncologist’s prior experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions on the importance of guidelines revealed themes such as consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified limitations to guidelines including lack of expert consensus, inability to “ think outside the box” to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, a common sentiment was that sharing this information is not a priority. One physician commented that sharing the guidelines with patients is, “ getting too much into the how you practice medicine, and they may not want to know, kind of like eating at a restaurant. You don't need to know how the cook's preparing everything.” Conclusions: Both patients and physicians expressed reasons why guideline discordant treatments would be acceptable. Providers’ preference to limit discussions of guidelines is discordant with patients’ desire for this information and may limit shared decision-making.
Development and initial psychometric validation of the advisor experience survey.
Authors: Bridge Erica , Peek Naomi , Leung Yvonne , Vanta Lucia , Dhanju Suman , Singh Simron , Moody Lesley 
Published: September 2018

220 Background: Patient, family and public engagement builds strong, sustainable partnerships benefitting the planning, delivery and evaluation of health services. With growing international evidence and increased organizational investment supporting this type of engagement, evaluating the experience of these individuals is essential to ensuring meaningful participation and value. This study describes the development and psychometric properties of the Advisor Experience Survey in order to assess on-going patient, family and public advisor engagement at the system-level. Methods: The development and psychometric validation consisted of five steps: 1) literature review to identify relevant engagement experience items; 2) modified Delphi process where relevant engagement experience items were rated by experts; 3) cognitive interviews to ensure that items were clear and understandable; 4) pilot of survey; and 5) exploratory and confirmatory factor analysis (EFA; CFA) to determine construct validity. Results: The 13-item survey was disseminated to eligible patient, family and public advisors between April and September 2016 using FluidSurveys. All items were rated on a 5-point Likert scale. A total of 126 responses were included in the EFA and CFA. The final confirmatory solution consists of 3-factors (Support and Resources, Engagement Opportunities and Engagement Experience), including 9-items (X2= 31.4, df = 24; AGFI = 0.92; CFI = 0.99; SRMR = 0.02 and RMSEA = 0.05; 95% C.I. = 0.00-0.09). The 3-factor solution explains a total of 92% of the variance of the advisor engagement experience. Conclusions: The 3-factor Advisor Experience Survey with 9-items is acceptable for measuring the patient, family and public advisor engagement experience as it demonstrates good internal consistency and construct reliability. Cancer Care Ontario utilizes the 3-factor solution to report patient, family and advisor engagement experience at the system-level on a quarterly basis.
Barriers and solutions to conducting patient-reported outcomes (PRO) research in patients with pain.
Authors: Brant Jeannine M. , Stricker Carrie Tompkins , Wujcik Debra 
Published: September 2018

227 Background: Cancer pain prevalence ranges from 52-77%. Poorly controlled pain contributes to patient suffering and increased health care utilization. Shared decision making (SDM), where patient preferences, goals, and concerns are discussed, can foster earlier identification and improved pain management. A study was proposed to determine if incorporating SDM into a pain care plan is feasible and effective. Methods: Patients with metastatic cancer reported their pain and symptom experiences on an electronic patient-reported outcome (ePRO) platform. A drill down pain assessment included questions on chronic and breakthrough pain and end of dose failure. The patient and provider jointly discussed ePROs; an individualized care plan was printed for each patient. One academic and two community sites planned to recruit 105 patients over 6 months. Accrual quickly fell behind predicted rates (1 vs 15 patients per month). Study teams met to identify and mitigate accrual barriers. Results: Using an implementation science framework, barriers were identified in study design, and patient, provider, and environmental issues. Literature reports challenges in accruing/ retaining patients with metastatic disease, such as uncontrolled symptoms, inability to complete measures, missed visits, hospice admission, and death. Researchers broadened eligibility requirements to include all cancer stages; study team members were re-educated to clarify the operational definition of pain (experiencing pain or controlled on opioids). Some patient-related barriers were solved with workflow modifications (pre-visit survey completion). Environmental issues such as privacy to complete ePRO measures and internet connection reliability were solved with clinical staff. Conclusions: Study accrual improved 500% (from 6 to 36 in 3 months) following design and process changes. While examining patients with metastatic disease is important, expanding eligibility allows researchers to still include these patients and yet answer research questions timelier with the expanded population. Applying implementation science principles during study design is relevant to broader studies of pain and symptom ePROs and SDM in cancer care. Clinical trial information: NCT03304145.
Differences in comprehension of somatic genomic profiling between younger and older adults with advanced genitourinary cancer.
Authors: Bergerot Cristiane Decat , Bergerot Paulo Gustavo , Hsu Joann , Dizman Nazli , Gray Stacy W. , Pal Sumanta K. 
Published: September 2018

228 Background: Genomic profiling (GP) plays an important role in the care of patients diagnosed with advanced cancer, and has been used to guide clinical decision making. As age has been associated with low health literacy, we sought to determine comprehension of the goals and objectives of GP between younger (age < 65) and older (age ≥65) with genitourinary cancers. Methods: Eligible patients had agreed to receive somatic GP as a part of routine clinical care through a CLIA-certified commercially available platform. Participating physicians conducted a standardized dialogue with patients pertaining to the rationale for and clinical utility of somatic GP. Patients then received an in-person survey lasting approximately 10-15 min and assessing a broad range of perceptions related to GP. Results: Among 47 patients, 62% were characterized as older adults. Diagnoses encountered included kidney (43%), prostate (32%), and bladder (25%). Only older adults perceived any shortcomings in the description of GP. These shortcomings related to the clarity of the descriptions of genomic data, as well as the accuracy, detail and compassion with which this information was conveyed. Older adults demonstrated a very strong reliance on physician input in their decision to obtain somatic GP - 42% of older adults suggested that trust in their physician was among the top three reasons for which they opted to do genomic testing, in contrast to just 10% of younger patients (P = 0.04). Both older and younger patients demonstrated frequent misconceptions pertaining to the role of GP. For example, the majority of younger (78%) and older (52%) patients suggested the test was being performed for prognostic purposes. Both groups also frequently held the notion that somatic testing could identify hereditary cancer-related disorders (younger: 78% vs older: 66%). Conclusions: Detailed surveys of patients with genitourinary cancers reveal varied comprehension of somatic GP between younger and older patients. Interventions to enhance understanding of the principles of GP may be helpful in facilitating shared decision-making, particularly among older patients.
Who are the cancer patients most likely to utilize lay navigation services and what types of issues do they ask for help?
Authors: Winget Marcy , Veruttipong Darlene , Holdsworth Laura M , Zionts Dani , Asch Steven M 
Published: September 2018

229 Background: In 2017, the Stanford Cancer Institute implemented a lay patient navigation program directed towards patients receiving at least two treatment modalities with the thought that these patients likely need more support than those with single treatment modality. We would like to target future services, prospectively, to patients that need them most. The aim of this paper is to understand the characteristics and concerns of the highest users of the lay navigation services. Methods: Patients were included if they had been assigned a care navigator between February 2017 through November 2017 and had at least four months of potential follow-up with their navigator. High contact patients were defined as those with the total number of contacts in the top 10% and/or the duration of contact in the top 25%. Demographic and clinical characteristics of patients were obtained from the electronic medical record. Data that captured patient-navigator interactions were abstracted from a templated note in the electronic medical record. Descriptive statistics were calculated to describe demographic and clinical characteristics of patients and the concerns raised to navigators. Results: There were 436 patients who met the inclusion criteria, 115 (26%) of whom were classified as high contact. High contact patients were more likely to be younger (under 60 years), non-white, have private insurance and live more than 20 miles from the cancer center than medium/low contact patients. They were also more likely to have multiple non-life threatening comorbidities such as diabetes without complications. The high contact patients accounted for 44% of all navigator contacts and 75% of all contacts in which a patient expressed any concern. 55% of high contact patient concerns were clinical in nature, 19% related to scheduling issues; 14% social/mental health issues; and 12% were non-clinical. Conclusions: The patients that are in the top 25% of utilization of lay navigators are a complex mix of patients and account for roughly 75% of the concerns of the broader patient population.
Opioid-associated deaths in patients with cancer: A population study of the opioid epidemic over the past 10 years.
Authors: Chino Fumiko Ladd , Kamal Arif , Chino Junzo P. 
Published: September 2018

230 Background: Over 40,000 Americans died due to opioid overdose in 2016; the epidemic is a top public health concern. Opioids are commonly used for cancer associated pain but it is unknown what risks for overdose exist in this vulnerable population. Methods: De-identified death certificate data was obtained via the National Center for Health Statistics. Death certificates contain 1 underlying cause of death and up to 20 contributing causes, as well as demographic data. All deaths due to opioids were included from 2006-2016; if present, cancer was noted as a contributing cause. Opioid death incidence was calculated from both the US and estimated cancer survivor population. Chi and R squared tests assessed for differences. Results: From 2006-2016, there were 895 deaths due to opioids in cancer patients compared to 193,500 in the non-cancer population. Opioid deaths increased from 5.33 to 8.97 per 100,000 people in the general population (significant time trend, p < 0.001, polynomial fit, R2 0.99). Opioid deaths increased in the cancer population from 0.52 to 0.66 per 100,000 (significant time trend, p < 0.001, linear fit, R2 0.24, slope = 0.018). Cancer patients who died due to opioid use were different from those who died due to opioids in the general population including: higher education (12.7 vs 6.9% at least a college degree), more women (38.5 vs 29.2%), fewer whites (82.3 vs 84.2%), more Hispanics (94.5 vs 91.3%), and fewer single patients (24.2 vs 48.1%) [all p < 0.001, except race p = 0.027]. Cancer patients also had older median age (57 years, IQR 50-65 vs median 42 years, IQR 31-51). 22% of opioid deaths were in lung cancer patients, followed by GI (21%), head & neck (12%), hematological (11%), and GU cancers (10%). Conclusions: Death from opioids as the primary cause noted on death certificates are 10 times less likely to occur in cancer patients versus the general population. There was a slight increase in opioid deaths in cancer patients; however, overall, there was not the sharp growth seen in the general population. Cancer patients at risk for opioid overdose are different than those at risk in the general population and care should be taken when planning effective treatment of cancer-related pain.
Restructuring of inpatient rounds to improve quality of care in patients with cancer.
Authors: Das Devika Govind , Williams Courtney , Godby Kelly Nicole , Rocque Gabrielle Betty , Cargo Pamela , Flood Kellie 
Published: September 2018

232 Background: Traditionally, hospital units function as multidisciplinary teams which work in silos and communicate via notes in the Electronic Health System. This often leads to communication breakdown, frequently translating to adverse clinical outcomes and prolonged hospital length of stay. Our primary objective was to introduce Inter-Professional Team (IPT) rounds on the oncology unit and evaluate the impact on length of stay (LOS) within a Plan, Do, Study, Act (PDSA) cycle. Methods: The care transition team planned the IPT rounds structure and training curriculum which included team goals, post-rounds structure for addressing barriers to care progression, and member roles/scripting. Change in LOS and case mix index (CMI)-adjusted LOS post-IPT round implementation ( Do) in July 2017 was analyzed ( Study) using hierarchical linear models for patients with an admission to the oncology service from September 2016 to March 2018. Beta coefficients (β) and 95% confidence intervals (CI) were estimated and models were adjusted for calendar time. Results: Ten attending medical oncologists participated in IPT round implementation. Of 889 oncology admissions, median LOS and CMI-adjusted LOS pre-IPT round implementation (n = 464) was 4 days (IQR 2-6) and 3 days (IQR 1.8-4.7), while post-IPT round implementation (n = 425) was 4 days (IQR 2-6) and 2.9 days (IQR 1.9-4.4), respectively. Three common reasons for admission were septicemia (n = 96), hematologic complications (n = 42, e.g. anemia/neutropenia), and renal failure (n = 25). Adjusted models for LOS and CMI-adjusted LOS showed no significant difference post-IPT round implementation (β = 0.8 days, 95% CI -0.7-2.3; β = 0.5 days, 95% CI -0.3-1.3, respectively) when compared to pre-implementation. Conclusions: We did not observe decreased LOS in early outcomes. However, IDT rounds built on TEAMSTEPPS 2.0 elements with incorporation of key principles desirable in a patient care team. Next steps include further analysis to better understand cancer stages and diagnoses contributing to longer LOS. We also plan to evaluate patient satisfaction, educational needs, and readmission rates to restructure ( Act) IPT rounds to better serve the needs of our unique patient population.
Lessons learned from the investigation of a sustained increase in paclitaxel hypersensitivity reactions (P-HSR) at a large community oncology practice: A mystery not fully solved.
Authors: Enright Katherine , Bussey Heather , Carvalho Maritza , Yousef Mary , Mills Allan , Myers Jeffrey A. 
Published: September 2018

233 Background: Trillium Health Partners (THP) is a large community oncology practice that has a culture of quality and safety. An investigation was triggered by a perceived increase in the rate of P-HSR during a weekly quality huddle in the chemotherapy suite. At the time THP had no formal hypersensitivity reaction tracking process. A retrospective review of P-HSR over the preceding 18 months identified an increase in reaction rates from a baseline of 1% to 4.5% that started 3 months prior to the raised concern. Methods: A systematic quality review was undertaken to identify triggers for the change and to identify steps to decrease P-HSR to baseline. There was no identified change in premedication, administration or compounding practice and no association with drug or lot number was identified. The increase in P-HSR was coincident with a change in the intravenous (IV) pumps and tubing system across the hospital. The change in IV pumps introduced several potential triggers including: a change in the options for priming the IV tubing which introduced a potential for variable concentrations of drug reaching the patient at the outset of the infusion, an interaction between drug and IV tubing, and a doubling of the IV tubing length which could result in incomplete delivery of the premedication. Results: Sequential practice changes were introduced to address each potential driver including i) a slow infusion protocol for first 2 cycles, ii) alternative tubing sets, iii) practice alert regarding potential for under-delivery of premedication. Over time P-HSR trended down towards the historic baseline, no single intervention had a sustained impact, although the practice alert regarding the administration of premedication seemed to induce the most change. A step wise withdrawal of interventions that were felt to be non impactful is underway. Conclusions: Although no clear cause for the increase in P-HSR was identified the systematic quality review resulted in improved standardization of nursing practice for chemotherapy delivery and the methodical approach also lead to the establishment of a more comprehensive hypersensitivity reporting system at THP.
Reduction of radiation safety incident reporting following implementation of the radiation oncology incident learning system (RO-ILS).
Authors: Nelson Carl , Roy Lori Ann , Wallace H. James 
Published: September 2018

236 Background: The Radiation Oncology Incident Learning System (RO-ILS) was initiated nationally June 2014 and is free, web-based, and currently used in more than 425 U.S. radiation facilities. RO-ILS was implemented at University of Vermont Medical Center (UVMMC) in October 2016 to facilitate safer, higher quality care. This implementation of RO-ILS was reviewed in order to determine whether the conversion to a new reporting system at UVMMC impacted radiation incident reporting at our institution. Methods: Radiation safety reporting at UVMMC included radiation incidents submitted by radiation therapists, dosimetrists and medical physics. Prior to RO-ILS, safety/quality incidents were submitted via a specified reporting form and submissions were reviewed monthly by the Radiation Oncology Quality Committee. After implementation of RO-ILS, radiation safety incidents were entered in RO-ILS and reviewed by the UVMMC RO-ILS administrator. Radiation incidents reported prior to October 2016 were entered into RO-ILS with the initial safety incident date. Results: Between April 2014 and May 2018, 136 radiation safety incidents were reported. There was a median of 7 incidents reported per quarter, decreasing from 8 to 6 per quarter after RO-ILS was implemented. Similarly, the average incidents per quarter was 8 and decreased from 8.9 to 6.7 per quarter after RO-ILS was implemented. Radiation incident types reported prior to RO-ILS were 78% “Near Miss” events but after RO-ILS decreased to 34%, while “Operational/Process Improvement” incidents increased from 17% pre RO-ILS to 49% post RO-ILS. The rate of radiation incidents reported per new patient starting radiation (the most frequent process associated with reported radiation incidents) was 0.59% and showed no significant trends or shifts before or after implementation of RO-ILS. Conclusions: Following implementation of RO-ILS at UVMMC, reported radiation incidents per quarter and the proportion of “Near Miss” events decreased, while the percentage of “Process Improvement” submissions increased. Further training and awareness of RO-ILS is planned with the goal of increasing staff participation and more robust reporting.