bluuebunny/crossref_metadata_2025_split huggingface dataset:
Factors influencing the use of electronic health record systems to provide follow-up care to cancer survivors.
Authors: Palos Guadalupe R. , Rodriguez Maria Alma , Lewis-Patterson Paula A. , Harris Rachel , Foxhall Lewis E. 
Published: September 2018

182 Background: One of the expected benefits of electronic health records (EHRs) is their interoperability to remotely access and exchange clinical information across systems and clinicians. Cancer survivors’ treatment summaries (TSs) and care plans (CPs) are documents that can be electronically transferred from oncologists to primary care providers. We conducted a needs assessment to identify factors which influenced EHRs in meeting these expectations in rural and underserved primary care settings. Methods: Clinicians from 2 family practice health care systems, located in central and northeast Texas were surveyed. REDCap, a web-based system, was used to develop, manage, and distribute the survey to a convenience sample of clinical staff from both settings. Survey questions focused on respondents’ demographic and clinical practice characteristics, current experience with TSs and CPs, and type of EHR used. Results: A total of 26 surveys were included in this analysis. Respondents were primarily physicians (73%). Overall 61.5% reported that ≤ 25% of their patients were diagnosed with cancer or currently had cancer. A patient’s self-report was the primary method used by majority of respondents to determine if a patient had a history of cancer. 80.8% indicated they would be interested in learning more about the use and development of TSs and CPs. Barriers reported towards the use of EHRs to deliver TSs and CPs included: EHRs interference with workflow (60%); limited knowledge on how to develop TSs and CPs (48%), inadequate access to IT resources (48%), and inefficient EHR systems (44%). In these settings, EHRs used were: Epic (61.6%), Aria (30.8%), and Medit (7.7%). Respondents’ comments on EHRs weaknesses included: “the two systems…do not completely communicate with each other” or “no place where a cancer treatment summary or survivorship plan is documented”. Conclusions: Primary care providers identified limitations in EHR operability as a major barrier to retrieving health information required for TSs and CPs. Clinicians in rural or underserved regions may benefit from education and retraining in EHR systems.
Defining a patient-reported outcome measure (PROM) selection process: What criteria should be considered when choosing a PROM for routine symptom assessment in clinical practice?
Authors: Montgomery Nicole , Bartlett Susan J , Brundage Michael Donald , Bryant-Lukosius Denise , Howell Doris , Ismail Zahra , Krzyzanowska Monika K. , Moody Lesley , Snyder Claire Frances , Staley Liang Monica , Barbera Lisa 
Published: September 2018

187 Background: PROMs capture the patient’s perspective on their health status and thus improve person-centred care. The Edmonton Symptom Assessment System has been the standard PROM used for all patients in Ontario. Recently, Cancer Care Ontario has chosen to expand the use of PROMs by adding cancer specific tools. The objective of this work was to develop a process to systematically evaluate and select PROMs for routine use in clinical practice. Methods: The development of the PROM selection process included several steps: 1) a literature scan to identify existing PROM selection guidelines and considerations; 2) development of clinically relevant criteria by a panel of methodological experts and patient advisors; and 3) use of a case study to test the process and identify gaps. In the case study, disease-site experts and patients were given the opportunity to review the PROMs and provide feedback. Results: The literature scan highlighted six resources endorsing three common considerations for PROM selection: symptom coverage, usability, and psychometric properties. The expert panel further developed criteria for each consideration. Symptom coverage criteria include percentage of prevalent, bothersome and expert endorsed symptoms addressed by the PROM. Usability criteria include: reference time-frame, scale, time to complete, scoring, plain language and translations. Psychometric criteria are: internal consistency, reliability, responsiveness, discrimination ability, meaningful change and translation validity. Each consideration is scored as weak, average or good based on how well the criteria are met. A summary matrix illustrates the overall assessment. In the case study, the selection process identified two top-performing PROMs; disease-specific patient focus groups were held to inform the final decision. Conclusions: This rigorous evaluation of candidate measures resulted in the selection of a PROM that was accepted by methodological experts, clinical advisors and patients. The case study demonstrated the value of disease-specific patient input on PROM selection.
Understanding health-related quality of life (HRQoL) in unresected stage III non-small cell lung cancer (NSCLC).
Authors: Ryan Kellie , Skinner Karen E , Fernandes Ancilla , Walker Mark S. , Pavilack Melissa , Punekar Rajeshwari S , VanderWalde Noam Avraham 
Published: September 2018

189 Background: Despite curative treatment intent, most patients (pts) with unresected Stage III NSCLC progress to metastatic disease. Prior research has shown significant benefits on clinical outcomes when HRQoL is assessed in clinical care, but understanding is limited in Stage III NSCLC. Methods: A retrospective review of community oncology medical records was conducted to examine real-world clinical outcomes such as overall and progression-free survival. Eligible pts were adults diagnosed from 1/1/2011 to 3/1/2016 with unresected Stage III NSCLC. In a subset of patients with available data, HRQoL was assessed using the 86-item Patient Care Monitor (PCM), a patient reported measure. Linear mixed models (LMM) were used to assess the impact of pt characteristics and change in PCM scores associated with progression. Results: The main sample included 478 pts: mean [SD] age was 67 [10] years, 55% male, 72% Caucasian, and 71.1% initially treated with concurrent chemoradiation. HRQoL analysis included 167 pts. LMM showed significant worsening of Index scores for General Physical Symptoms, Treatment Side Effects, Despair, and Impaired Ambulation (p < 0.001) as well as Acute Distress (p = 0.044) at progression. Of the six symptoms analyzed, significant worsening of scores at progression occurred in pain, difficulty breathing, and fatigue (p < 0.001). HRQoL consistently worsened at progression, but the pattern of severity for Index scores varied when separately evaluated in the pre- and post-progression periods. Symptom patterns showed improvement for Treatment Side Effects, Acute Distress, and Despair during the pre-progression period, but worsened post-progression, an effect that exceeded the pre-progression improvement. Receipt of radiation and increasing age were associated with better overall HRQoL; HRQoL tended to be worse in pts with greater comorbidity burden and impaired performance status. Conclusions: Our study demonstrated a pattern of clinically meaningful worsening of HRQoL at progression, with pts reporting worsening physical symptoms and negative psychological states. The results also appear consistent with clinical expectations and show HRQoL benefit of radiation therapy.
Pilot study of iPad-based patient-reported outcomes at the MGH Cancer Center.
Authors: Parikh Aparna Raj , Soriano Margaret , Hochberg Ephraim P. , McLeish Courtney , Lennes Inga Tolin , Souza Elizabeth , Mulvey Therese Marie 
Published: September 2018

190 Background: Patient reported outcomes (PROs) have been shown to improve outcomes in cancer patients in clinical trials and have also been shown to improve the patient experience, provide real-time access to patient reported symptoms and are increasingly used across disciplines. Given the importance of PROs, at the MGH Cancer Center, we implemented a pilot using iPADs to capture patient reported outcomes for patients receiving IV chemotherapy in the breast and lymphoma clinics as well all IV chemotherapy patients at one of the MGH satellite clinics where patients across all disease groups are seen. Methods: 12 measures from the PRO-CTCAE were selected to be applicable to all cancer patients. Working with the technology team and EPIC team at MGH the selected PROs were loaded into iPADs and are automatically assigned to patients receiving IV chemotherapy. Staff and clinicians were trained in the breast, lymphoma and satellite clinic. Patient who were receiving IV chemotherapy were assigned iPADs at check in. Patients completed the questionnaire and in real-time, the data was available in the EPIC chart. The objectives of the pilot were to assess the feasibility of collecting iPAD based PROs at the MGH Cancer Center. Results: In the 4-month pilot, there were 2,304 visit types that were eligible to receive an iPAD for PRO collection, 79% (N = 1,1816) patients were assigned an iPAD. Of the 1,816 patients assigned an iPAD, 65% (N = 1,173) patients completed the PROs, 4% (N = 36) partially completed the PROs. In terms of completion at the main disease specialty clinic vs the satellite, completion rates were higher at the satellite (77% vs 44%). During one week, we asked the front desk to record why patients did not complete the PROs-93 patients were assessed, 45% of patient refused the iPAD, in 28% of these patients the staff did not capture the reason and 22% were not given an iPAD. Conclusions: This pilot demonstrates the feasibility of collecting PROs in an oncology clinic for patients receiving IV chemotherapy. We plan to continue to improve the assignment of PROs to eligible patients, educate staff, providers and patients on the important of PROs and plan to expand to all the clinics at MGH Cancer Center and satellite centers.
Comparison of health utility values from EQ-5D-3L and EQ-5D-5L in patients with breast cancer in different health states.
Authors: Tse Tiffany , Yang Dongyang , Baek Justine , Liang Mindy , Skitch Amy , Brezden-Masley Christine , Brown M. Catherine , Torres Sofia , Xu Wei , Liu Geoffrey 
Published: September 2018

197 Background: Recently, our group reported Canadian-derived EQ-5D-3L-derived health utility scores for over 20 different cancer sites (PMID: 27567613). However, more recently, a Canadian valuation set for EQ-5D-5L derived health utilities has been reported. As we switch from the 3L to 5L version, we need to evaluate whether the data can be analyzed together across versions, or whether the older cancer valuations need to be replicated. Methods: Breast cancer patients in three health states (primary breast cancer, locoregional recurrence of breast cancer, and metastatic breast cancer) were evaluated using EQ-5D-3L from 2014-2015 and EQ-5D-5L from 2016-2017. Mean (SD) values were compared. We opted not to compare the two versions in the same patients because of recall bias, so we compared two different sets of patients. Results: Of 387 breast cancer patients, 259 (67%) had completed the EQ-5D-5L, while 128 (33%) completed the EQ-5D-3L. The two groups had similar distributions for clinico-demographic data except for ethnicity, where there were more Asian patients in the 5L (22% vs 9%; p < 0.0074). When comparing EQ-5D-5L and EQ-5L-3L within health states, the EQ-5D-5L values were numerically higher for all three health states: for primary breast cancer (mean HUS(SD)/version: 0.85(0.11)/5L vs. 0.81(0.16)/3L) with a p-value of 0.028; locoregional recurrence (0.87(0.08)/5L vs. 0.85(0.20)/5L) with no available p-value due to the small sample size; metastatic disease (0.79(0.15)/5L vs. 0.78(0.13)/3L) with a p-value of 0.78. Histogram distributions appeared different between the two versions. There was greater separation and statistical significance between health states when using the 5L version when compared to the 3L version. The 5L version had a greater variation of values than the 3L, utilizing the entire spectrum of values from 0.0 to 1.0. Conclusions: Though the trends across health states were similar in EQ-5D-5L and EQ-5D-3L health states, values using the 5L were higher and distributions appeared different. There should be extreme caution if considering combining health utility values from 5L and 3L in Canadian breast cancer datasets.
Qualitative study to understand the emotional response to a metastatic diagnosis in castration-resistant prostate cancer.
Authors: Burbridge Claire , Randall Jason A , Symonds Tara , Lawson Joe , Dearden Lindsay , McQuarrie Kelly , Espina Byron M. 
Published: September 2018

201 Background: To explore the emotional response of men with a recent metastatic Castration Resistant Prostate Cancer (mCRPC) diagnosis, emotional burden of monitoring their condition prior to additional treatment for metastasis (“watch and wait”), and emotional impact on caregivers. Methods: In-depth, qualitative, one-to-one interviews with 25 men with a recent diagnosis of mCRPC from the US (n = 4), France (n = 12) and Germany (n = 9). Additional interviews were conducted with 12 of the participants’ primary support person (PSP) - a friend/family member who provided support to the participants emotionally and/or in everyday tasks; US (n = 2), France (n = 8), Germany (n = 4). Interviews were audio-recorded, transcribed and thematic analyzed. Results: Participants were 54-85 years old; 88% retired; mean time since metastatic diagnosis was 7.5 months (seven were within 12 weeks of metastasis, all others within 24 months of metastasis); and 19 experienced pain related to their CRPC. Symptoms and impacts associated with mCRPC were consistent across countries. The most frequent symptoms (reported by ≥75%) were fatigue/tiredness, sexual dysfunction and pain. Metastasis had a negative emotional impact, participants reported fear of what happens next. Some explicitly associated certain symptoms/impacts with metastasis, such as localized pain, diarrhea, blood in stool, and increased impact of activities of daily living. 72% highlighted that metastatic diagnosis impacted their emotional state, experiencing worry, anxiety, fear, low mood/depression and shock, with increased burden on PSP and strain on relationships. 80% highlighted that monitoring PSA values was important, and ten discussed the emotional impact of this: fear and worry when rising; glad, happy, and excited when falling. Most participants (80%) reported that, if a medication had been available to them to delay metastasis, they would have taken it, even if asymptomatic. Conclusions: Metastatic diagnosis was associated with a worsening of symptoms and both physical and emotional impacts. Rising PSA levels prior to metastasis had a negative emotional impact. Most participants were willing to take a medication to delay metastasis.
The costs of breast cancer care: Patient-reported experiences and preferences for transparency.
Authors: Greenup Rachel Adams , Rushing Christel , Fish Laura , Hyslop Terry , Peppercorn Jeffrey M. , Wheeler Stephanie B. , Zafar Yousuf , Myers Evan , Hwang Eun-Sil Shelley 
Published: September 2018

207 Background: Despite the recognized side effect of financial toxicity after cancer, treatment decisions for breast cancer rarely include the costs of care. We sought to determine women’s experiences with breast cancer treatment costs, and their preferences for cost transparency at diagnosis. Methods: Women ≥18 years old with a history of breast cancer completed an 88-question electronic survey based on validated or published items. Descriptive statistics and regression analysis were used. Results: In total, 607 women with stage 0-III breast cancer participated. Median age at diagnosis was 49.6 years. Median time from diagnosis was 6.7 years (range 0.1-37.1). The majority had private (70%) insurance or Medicare (25%), and reported an annual household income ≥$74,000. 43% reported considering costs in treatment decisions. Median reported out-of-pocket (OOP) costs were $3,500; 25% reported OOP costs ≥$8,000, 10% reported OOP costs ≥$18,000 and 5% reported OOP costs ≥$30,000. 15.5% reported significant to catastrophic financial burden. Bilateral mastectomy +/- reconstruction vs lumpectomy (OR 1.9, p 0.03), greater stage at diagnosis (stage 3 vs 0, OR 3.9, p < 0.01), and discussion of costs during the clinical encounter (OR 2.3, p < 0.01) were associated with a higher risk of financial harm. Women who reported discussing costs were more likely to be stage 2 or 3 (56% vs 40%, p = 0.02), less likely to be depressed (24% vs 30%, p = 0.03), and had less insurance coverage (trend p = 0.02) compared to those who did not. Older age (OR 0.95, p < 0.01), increasing household income (overall p < 0.001), better insurance coverage (OR 0.5, p < 0.001), and longer time since diagnosis (OR 0.65, p < 0.001) was associated with a decreased risk of financial harm. 78% of participants never discussed costs with their cancer team. 79% preferred cost transparency prior to embarking on care, and 40% preferred that doctors consider costs when making recommendations. Conclusions: Many women with breast cancer reported significant financial burden related to their care, and the vast majority preferred knowing costs at diagnosis. Cost transparency may improve the quality of preference-sensitive treatment decisions and reduce the risk of financial harm.
The effects of participation in an individualized exercise program under the supervision of health care professionals on cancer-related fatigue.
Authors: Megan Mary Elizabeth , Maul John Scott , Olson Lauren Ashley , Pogodzinski Jennifer Lynn , Singh Maharaj 
Published: September 2018

208 Background: A majority of (80–100%) of patients with cancer report cancer-related fatigue. Physical activity has shown to be an effective intervention for cancer-related fatigue. The cancer rehabilitation team at Aurora Health Care’s Aurora Medical Center Grafton initiated the Exercise for Cancer Recovery Program (ECRP) in order to have a greater impact on the quality of life of their patients. ECRP was an individualized exercise program taking place in a group setting with other cancer survivors under the supervision of healthcare professionals. The program was open to patients with all types and stages of cancer, including patients in active treatment as well as those who completed treatment. The aim of the study was to determine if participation in ECRP reduces cancer-related fatigue. Methods: Upon referral and/or clearance from the patient’s oncologist/advanced practitioner, the patient was evaluated by a physical therapist and placed on an individualized exercise program. ECRP ran twice per week for an hour. Patients followed and filled out an exercise log. During each session, the supervising health care professionals circulated throughout the class, providing individual guidance as appropriate to ensure safe participation and motivation. Baseline data on fatigue was obtained for each patient upon the initial session and monthly thereafter using the Brief Fatigue Inventory Outcome Measurement tool (BFI) over a 12-month period dating from January to December 2017. Twenty-seven patients participated in ECRP. Not all patients attended all exercise sessions or completed BFI every month. The minimum fatigue score was determined and compared with the initial score utilizing a paired t-test and signed rank test. Results: Data was obtained and analyzed utilizing a paired t-test and a signed rank test to evaluate the significance of BFI scores obtained between the initial and minimum score. There was a significant reduction in the Total Brief Fatigue score (P-value < 0.001). Conclusions: An exercise program resulted in a significant reduction in cancer-related fatigue with improved patient outcomes and patient satisfaction.
National patient experience data and correlation with in-hospital adverse gynecologic cancer surgical outcomes.
Authors: Dottino Joseph , He Weiguo , Sun Charlotte C. , Zhao Hui , Lu Karen H. , Meyer Larissa 
Published: September 2018

21 Background: The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) is a patient experience and quality of care measure that impacts hospital reimbursement. HCAHPS data is made available to the public through Centers for Medicare and Medicaid. Given the potential implications for healthcare decision-making, this study sought to determine the utility of hospital-level data from the HCAHPS survey as a predictor of in-hospital postoperative outcomes in gynecologic cancer patients by creating a link with the Nationwide Inpatient Sample (NIS) database, an inpatient care database developed for the Healthcare Cost and Utilization Project (HCUP). Methods: 2009-2011 HCAHPS survey data was used to assign hospitals into terciles by scores. The NIS database was used to identify admissions for cancer-specific surgeries for patients with ovarian, uterine, and cervical cancers. Outcomes included complications, mortality, and prolonged length of stay. Mixed effects models compared correlation of outcomes and HCAHPS scores, after adjustment for patient-level and hospital-level variables. Results: 17,509 linked encounters in 651 hospitals across the U.S. were identified, with 51% uterine, 40% ovarian, and 9% cervical cancer surgical admissions. In-hospital mortality was less likely in hospitals in the highest vs. lowest tercile of summary HCAHPS scores (odds ratio (OR) 0.54, 95% CI: 0.31-0.94). While higher scores were not associated with overall postoperative complications, by complication subcategory, admissions in top tercile hospitals were less likely to have surgical complications (OR 0.82, 95% CI 0.69-0.98). No differences were found in risk of medical or nursing-related complications, or prolonged hospitalization (p > 0.05). Conclusions: For patients undergoing gynecologic oncology surgery, assessment of patient experience has limited correlation with in-hospital adverse surgical outcomes. Awareness of the limitations of HCAHPS survey data may better inform patients as consumers and highlights the importance for transparency of relevant quality measures.