bluuebunny/crossref_metadata_2025 huggingface dataset:
Care coordination and emergency department (ED) use at the end of life for patients with cancer: Findings from structured interviews with primary caregivers.
Authors: McDermott Cara L. , Ramsey Scott David , Engelberg Ruth , Woo Cossette , Curtis J. Randall , Starks Helene
Published: September 2018

161

Background: For cancer patients who want to die at home, care coordination helps ensure that patients’ symptoms are managed at home, avoiding an ED visit and subsequent hospitalization. We conducted a qualitative study with patients’ primary caregivers, assessing the relationship between care coordination and ED visits in the last month of life. Methods: From October-December 2017, we audio-recorded semi-structured phone interviews with 35 adults who were primary caregivers for a patient who died with cancer between July-December 2016. Two analysts independently coded transcripts using qualitative content analysis and summarized results as major themes. Results: Most respondents were white (91%), female (63%) and spouses (89%). Twenty-four patients (69%) enrolled in hospice; of those, 15 (63%) received services for < 14 days, often enrolling after an unanticipated hospitalization or developing higher symptom burden. We identified three major themes related to care coordination and unanticipated ED visits/hospitalizations. First, caregivers reported insufficient at-home medical support especially following changes in patient status due to falls, pain, infection, or diarrhea/dehydration: “We have to go back to the hospital. You are getting worse and you are getting so weak, you are going to fall. And he said: ‘Okay, let's go.’ And he never came back home.” Second, lack of knowledge regarding whom to contact with needs: “We could eventually get people, but…there tended to be some significant delay… there weren’t facilities open... the emergency room…always seemed like a questionable best choice… the time and stress involved to the patient seemed like a big negative.” Third, caregiver burden: “We have got to go back to the hospital. I can't do this. I can't do this.” Conclusions: Caregivers reported significant gaps in care coordination and caregiving burdens that prompted ED visits and subsequent hospitalization. Active facilitation of hospice enrollment by oncologists and improved access to hospice resources are key targets to help patients avoid adverse events such as ED visits/hospitalizations while providing adequate support to caregivers.
Clinical workflows to support cost-of-care conversations: Multisite design study.
Authors: Henrikson Nora B. , Banegas Matthew P. , Tuzzio Leah , Lim Catherine , Schneider Jennifer L , Walsh-Bailey Callie , Scrol Aaron , Hodge Stephanie M
Published: September 2018

168

Background: Patients prefer to discuss costs in the clinical setting, but current workflows are not designed to support cost-of-care conversations. Methods: We conducted a human centered design study to identify clinical workflows that optimize cost of care conversations. We conducted ethnographic observations at primary care departments or oncology clinics at two integrated health systems, assessing barriers and facilitators to discussing costs with patients. We then designed three unique patient experiences of having financial concerns addressed in the clinic setting. We refined these experiences following in-person patient interviews (n = 20). All data was synthesized into (1) a set of clinical workflow requirements and (2) journey maps describing sample workflows for the three patient experiences. Results: Most patient cost concerns take one of three unique pathways, each with workflow implications: (1) informing clinical decision-making, such as alternative treatment selection, mode of administration, or therapy sequence; (2) planning and budgeting concerns for therapy; and (3) addressing immediate financial hardship. Workflow requirements include organizational recognition of the need for clinic-based cost of care conversations; access to cost and benefits data to support each conversation pathway; clear team member roles and responsibilities for addressing cost of care concerns, including the role of the physician; pursuit of a patient experience that includes a clinical culture where cost questions are normal and each patient's values, preferences, and privacy are respected; patients know who to go to with cost questions; patients' concerns are documented to minimize repetition to multiple team members; and patients learn their expected OOP costs before treatment begins. Conclusions: Clinic-based workflows for cost-of-care conversations that optimize patients’ care experience require organizational commitment to addressing cost concerns, clear roles and responsibilities, appropriate and complete data access, and a team-based approach.
A collaborative program for educating urban youth about HPV risk and cancer prevention.
Authors: Jarvey Balistreri Jennifer , Schulz Cathy , Barry-Weers Anne Marie , Weese James L.
Published: September 2018

169

Background: HPV infection is the most common sexually transmitted disease. Exposure to this infection is associated with cancer later in life. Public data regarding HPV vaccination rates and health disparity (as evidenced by low-income, high teen birth and STI rates) were identified. Methods: Based on the supposition that health disparity is associated with low socioeconomic status, a Wisconsin state map provided by the Center for Urban Population Health identified 29 zip codes in the City of Milwaukee, and are broken by low, medium, and high income brackets. An HPV education program, in partnership with Milwaukee Public Schools (MPS), was developed with a focus on the low income bracket to emphasize infection exposure and the safety and efficacy of the HPV vaccine in cancer prevention. This included education on safe relationships and emphasis on personal health advocacy. Program development was aimed at the health literacy of youth. Collaboration occurred with MPS leadership and their established health curriculum to ensure the HPV program accommodated the academic level of the freshman health classroom. Results: The data is reflective of HPV vaccine series completion rates within the zip codes where the HPV program was presented. Logistic regression was used and a significant rise for HPV completion rates by year (p = 0.0003) and by zip code (p < 0.0001) were observed. Conclusions: As the program evolves, program evaluations and public data continue to be reviewed along with feedback from various stakeholders to maintain the quality and integrity of the program. Additionally, Aurora Health Care has received requests to share this HPV program best practice with other institutions to expand it throughout urban areas of Wisconsin and Illinois.[Table: see text]
Improving end-of-life care in GI oncology patients.
Authors: Hathaway Lindsey Jackson , Rose Tim , Sekunda Michelle , Qin Yi , Silvestre Julio , Keng Michael Kenneth
Published: September 2018

172

Background: In FY17, there were 108 patients with cancer who died on an inpatient unit at UVA, and of these, 17 patients (16%) died with incurable advanced stage GI cancer. In addition, 54% of these GI cancer patients did not have an outpatient palliative care consult prior to their time of death. Lack of early palliative care consultation leads to poor end of life care, compromises quality of life for patients and their families, and promotes the overutilization of healthcare. Methods: We participated in the ASCO Quality Training Program for this project. Our first aim (AIM#1) was to increase inpatient palliative care consults by 25% in patients with advanced stage GI cancers who were considered unscheduled admissions by hospital day 2. Our second aim (AIM#2) was to increase outpatient palliative care referrals by 25% in patients with pancreatic and hepatobiliary cancers by the second visit. We conducted these aims at UVA from August 2017 to February 2018. The intervention was to remind the GI oncologists and the house staff to place the palliative care consult. Results: From our pre-intervention data for AIM#1, 33 patients with advanced GI cancer (34%) had a palliative care consult in the inpatient setting from July 2017 to July 2018. Post intervention data showed that 14 patients (73%) had a palliative care consult, 10 patients (71%) with palliative care consult went to hospice, 11 patients (59%) have died since our intervention with only 1 death occuring in the inpatient setting and 1 patient with an readmission. From our pre-intervention data for AIM#2, 24 advanced GI cancer patients (5.5%) had a palliative care referral, and post-intervention 11 patients (21%) had a palliative care referral. Of the 11 patients with palliative care referrals, 6 patients (55%) went to hospice. Conclusions: We met both of our primary inpatient and outpatient aims to increase palliative care consults for advanced stage GI oncology patients. Our data clearly shows a benefit of early palliative care referral in GI oncology patients both in the outpatient and inpatient setting. We plan to continue to collect data on long-term outcomes for our patients, and investigate future directions to improve sustainability and to expand to other cancer service line populations.
Understanding what drives patients with cancer to visit the emergency department: A qualitative study.
Authors: Longmore Avery , Veloce Nicole , Mercado Marck , Dainty Katie , Hicks Lisa K.
Published: September 2018

173

Background: Visits to the emergency department (ED) are common among patients with cancer (PWCs). Previous research suggests that few ED visits are precipitated by true oncologic emergencies (Diaz-Couselo 2004). Designing initiatives to reduce ED visits requires a rich understanding of factors that drive PWCs to visit the ED. Methods: Standardized interviews were conducted with 12 oncology clinicians at an academic oncology clinic in Toronto, Canada. Interviews were also conducted with 10 PWCs. Interviews explored factors that may drive ED visits, and interviewees’ insights into interventions to prevent ED visits. Interviews were audio recorded and transcribed. Transcriptions were qualitatively analyzed by two independent reviewers using the constant comparison method (Strauss and Corbin 1998). Results: Ten themes were identified as factors that may drive ED visits, with little overlap between themes identified by clinicians versus those identified by PWCs. Clinicians identified low socioeconomic status, lack of social support, advanced age, comorbidities, anxiety and non-adherence as important factors. In contrast, PWCs focused on the severity and expectedness of symptoms, lack of access to afterhours oncology advice and care, and adherence with medical and non-medical advice as drivers of ED visits. Regarding potential interventions, there was broad agreement between clinicians and PWCs regarding what might be helpful. Both groups identified improved access to expert cancer advice/care, improved coordination of care between clinics and ancillary health services, and patient education as important interventions. Clinicians also believed increasing community supports would help prevent ED visits. PWCs emphasized that some ED visits are not preventable. Conclusions: Clinicians and PWCs have different views on what drives ED visits. Despite identifying different drivers, clinicians and PWCs identified common solutions for reducing ED visits.
End of life: A focus upon making doing the right thing easier in challenging conversations.
Authors: Dunn Kathleen , Hepler Marjorie , Shariff Imran , Denny, DBA Diane , Crilley Pamela A.
Published: September 2018

174

Background: Communication surrounding end of life decisions is difficult for patients and their loved ones as well as the clinicians involved in their care. An audit of end of life measures brought to light an area of opportunity across a national network of five geographically dispersed medical centers that resulted in a quality improvement project which sought to enhance communication processes among clinicians and patients. Methods: Utilizing principals of complexity theory, a multidisciplinary task force developed a communication tool to guide clinicians in discussions with patients and improved upon the electronic health record (EHR) to make documentation clearer, easier and more meaningful. “Words that Matter” with scenarios and suggestions for clinicians to introduce palliative care or hospice to patients were established. EHR enhancements included structured fields for hospice discussion and referral based upon network defined objective clinical criteria. A hospice referral field was also created to allow physicians to place an order along with discontinuing chemotherapy without leaving the note. Education was provided to clinicians in various formats. Implementation occurred early fall 2017. Results: Structured fields allow for easier electronic data pulls for reports to measure process improvement and communication. Outcome measures of interest include: chemotherapy administered in the last 14 days of life and timeliness of referral to hospice. Additional process metrics are in place to measure utilization of supporting resources. Conclusions: Effective communication of end of life issues and timely hospice referral is an integral part of care. Communication tools and criteria prompt our physicians to engage in discussions and refer patients earlier in their journey, when appropriate. Providing structured fields in the EHR has made documentation more complete.[Table: see text]
Mobile device access to electronic patient portals in oncology: Potential implications for patient and practice experiences.
Authors: Pho Kelvin Ky-Minh , Lu Rong , Gates Samantha , Cai Jennifer , Xie Donglu , Xie Yang , Lee Simon Craddock , Gerber David E.
Published: September 2018

179

Background: Mobile devices provide individuals with rapid and frequent access to electronic patient portals. How patients use this growing and widespread technology to review test results and communicate with providers is not known. Methods: Retrospective study of patients enrolled in the MyChart electronic health portal associated with the EPIC electronic medical record in the Harold C. Simmons Comprehensive Cancer Center. We recorded type of portal access according to year and patient characteristics. Associations between patient characteristics and type of portal access were tested using Mann-Whitney test, Chi-square test, and linear Gaussian regression models. Results: Since the availability of mobile access in 2012, 2,524 patients accessed MyChart from a mobile device at least once, accounting for 291,526 mobile logins. The proportion of patients with mobile MyChart logins increased from 4% in 2012 to 13% in 2017 ( P= 0.004). Among these patients, the proportion of logins from mobile devices increased from 22% to 72% ( P< 0.001). Mobile access occurred more frequently among younger ( P< 0.001), black ( P= 0.002), and Hispanic ( P= 0.004) patients. In 2017, among patients who accessed MyChart from mobile devices at least once, those under age 40 years used the mobile application for over 90% of logins; those over age 60 years used the mobile application for 65% of logins. Black and Hispanic patients who used mobile MyChart access did so for approximately 80% of logins, compared to 70% of logins for non-Hispanic white patients. Before 2012, patients who went on to use mobile access averaged about five more logins per year than did mobile application never-users. While login frequency increased for both groups, the change was far greater for mobile application users. After 2012, total portal login frequency increased approximately 110% among patients who used mobile access, compared to 25% among non-users ( P< 0.001). Conclusions: Mobile access to electronic health portals has increased patient portal use, particularly among traditionally underserved populations. How this widely and immediately available technology impacts patient and practice experiences warrants further study.
Impact of radiotherapy facility volume on the management and survival of patients with muscle-invasive bladder cancer receiving bladder-preserving therapy.
Authors: D'Rummo Kevin , TenNapel Mindi , Shen Xinglei
Published: September 2018

18

Background: Higher facility surgical volume predicts for improved survival in patients with muscle-invasive bladder cancer (MIBC) who undergo radical cystectomy. Here, we investigated the association between facility radiotherapy (RT) case volume and compliance with National Comprehensive Cancer Network (NCCN) guidelines as well as overall survival (OS) for patients with MIBC receiving radiation-based bladder preservation. Methods: The National Cancer Database (NCDB) was used to identify patients who were diagnosed with non-metastatic MIBC from 2004 to 2015 and received RT at the reporting institution. Patient, tumor, and treatment characteristics were recorded. Facility RT case volume was defined as the summed MIBC cases treated with RT during the study period. Facilities were divided into high or low volume groups at the 80th percentile of RT case volume. We compared compliance with NCCN guidelines regarding total RT dose of at least 55 Gy, use of TURBT prior to RT, and planned use of concurrent chemotherapy using the χ2 test. OS was assessed using Kaplan-Meier method. A Cox proportional hazard model was used to evaluate predictors of survival. Results: There were 7,562 included patients, and 3,816 (50.5%) were treated at a high-volume center. Median RT case volume was 21 for high-volume centers versus 8 cases for low-volume centers. Higher rates of compliance with all three NCCN recommendations were observed at high-volume centers (48% vs 41%, P< .0001). Age, sex, tumor stage, nodal status, Charlson Comorbidity Index, insurance status, and use of a TURBT prior to RT were predictive of survival. Volume as a continuous variable was an independent predictor of OS ( P= .002). Treatment at a high-volume facility was associated with significantly greater OS for all patients (log-rank P= .001), including patients with a Charlson Comorbidity Index of 0 ( P= .012). Further division of facilities into quartiles revealed incremental improvement in OS with higher facility volume ( P= .001). Conclusions: Bladder preservation treatment at a high-volume facility is associated with greater guideline-concordant management and improved OS among patients with MIBC.
The impact of routine ESAS use on receiving palliative care services: Results of a population-based retrospective matched cohort analysis.
Authors: Barbera Lisa Catherine , Sutradhar Rinku , Earle Craig , Mittmann Nicole , Seow Hsien , Howell Doris , Li Qing , Deva Thiruchelvam
Published: September 2018

191

Background: In 2007 Cancer Care Ontario began standardized symptom assessment as part of routine clinical care using the Edmonton Symptom Assessment System (ESAS). The purpose of this project was to evaluate the impact of this program on referrals to palliative care. We hypothesized that patients exposed to ESAS would be more likely to be referred. Methods: A retrospective matched cohort study was conducted to examine the impact of ESAS screening on the initiation of palliative care services provided by physician or homecare nurse among newly diagnosed cancer patients in Ontario, Canada. The study included all adult patients who were diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using four hard matched variables and propensity-score matching with 14 variables, cancer patients exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or the end of study at Mar 31, 2017. Results: The final cohort consisted of 204,688 matched patients with no prior palliative care consult. The pairs were well matched. The probability of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared to those who were not (20.6% vs. 15.2%, p < .0001). The risk of death without receipt of palliative care within the same period was low in both groups. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04-1.08). Conclusions: Cancer patients who completed ESAS were more likely to initiate palliative care services than those who didn’t. ESAS screening may help identify patients who would benefit from a palliative approach to care earlier in their clinical course.
Financial toxicity among patients with lung cancer in a publicly funded health care system.
Authors: Ezeife Doreen Anuli , Morganstein Joshua , Lau Sally C , Le Lisa , Cella David , Bradbury Penelope Ann , Liu Geoffrey , Sacher Adrian G. , Shepherd Frances A. , Leighl Natasha B.
Published: September 2018

192

Background: Financial distress has been established as a clinically relevant patient-reported outcome (PRO) associated with worse mortality and quality of life, but remains under-recognized by health care providers. Our goal was to define factors associated with financial toxicity (FT) in a public healthcare system. Methods: Patients with advanced lung cancer were recruited from outpatient clinics at the Princess Margaret Cancer Centre (Toronto, Canada). FT was measured with the validated Comprehensive Score for Financial Toxicity (COST) instrument, a 12-item survey scored from 0-44 with lower scores reflecting worse financial well-being. Data on patient and treatment characteristics, total out-of-pocket costs (OOP) and extended insurance coverage (EIC) were collected. Multivariable logistic regression models were fit for COST score and each variable, to determine factors associated with greater FT (COST < 21). Results: Of 251 patients approached, 200 (80%) participated. Median age of the cohort was 65 years; 56% were female, 64% immigrants and 77% employed or on pension. Median total OOP while on treatment ranged between $1000-5000 CAD. Median COST score was 21 (range 0-44). FT was associated with age, with patients < 65 years reporting greater FT than older patients (COST 18.0 vs. 24.0, p < 0.0001). In multivariable logistic regression analysis, younger age was associated with greater FT, when adjusting for income, employment status, OOP and EIC (OR 3.6, [95% CI, 1.5-9.1]; p < 0.0001). Total OOP > $1000 and EIC also were associated with greater FT (adjusted OR 5.0 [95% CI, 2.0-12.1] and 3.7 [95% CI, 1.5-9.1], respectively). Conclusions: Age is significantly associated with FT in the Canadian (Ontario) public healthcare system, with younger lung cancer patients reporting greater financial distress. This study highlights priority patient populations where FT should be routinely assessed and appropriate resources for support offered.
Decisional preferences and satisfaction with short-course radiation for breast cancer.
Authors: Culbert Matthew , Bidermann Gregory , Wallace Audrey S.
Published: September 2018

193

Background: Limited literature exists regarding preferences and decisional satisfaction for women who choose accelerated partial breast irradiation (APBI) in lieu of 6-7 weeks of radiation. This analysis provides long-term patient reported outcomes in women treated with APBI at one institution. Methods: Records of women treated primarily with balloon-based APBI (2005-2013) were reviewed after IRB approval. Women with recurrent disease or poor prognosis second primary cancer were excluded. Assessment of decisional factors important to the patient, as well as satisfaction and regret with treatment choices (Decisional Regret and Satisfaction Scales) were captured via mail or telephone. Results: In 141 women who met inclusion criteria, 83 participated. Median age at diagnosis was 62 years (SD = 9), and median time from RT to survey completion was 102 months (SD = 8). Histology was pre-invasive, (25%), invasive (52%), and combined invasive/pre-invasive (23%). The majority had estrogen/progesterone receptor positive disease. Factors that were important in decision making included convenience, physician recommendation, financial considerations, novelty of treatment, desire to avoid mastectomy, and recovery time. The majority (48%) reported convenience to be the single most important factor. Provider recommendation was the primary factor in decision making for 20% of women. Most women agreed that their choice was the right decision (96%) and most felt adequately informed (90%). The majority (92% and 90% respectively) of women agreed that their decision was consistent with their personal values and was the best decision for them personally. Decisional satisfaction was high (95%). Overall satisfaction with treatment choices was high: 84% and 10% reported being totally and somewhat satisfied respectively. The majority (90%) of women stated they would make the same treatment choice again. Conclusions: Decisional satisfaction remains high almost a decade after completion of short course radiation. Practitioners should consider patient values and preferences as part of shared decision making when determining type and duration of radiation as part of breast conservation therapy.
Real-world economic outcomes of early progression in newly diagnosed multiple myeloma (NDMM) patients (Pts).
Authors: Clancy Zoe , Pandya Shivani , Shrestha Sulena , Wang Li , Baser Onur , Ni Quanhong
Published: September 2018

194

Background: Despite improved survival with advanced multiple myeloma (MM) treatments (Tx), 15–20% of pts experience early relapse. We assessed the economic impact of early progression among non-stem-cell transplant NDMM pts. Methods: NDMM pts with ≥ 1 Tx (1st claim date: index date) from 01Jan2011–31Dec2015 were identified from the 100% Medicare database. Eligible pts had ≥ 1 full cycle of therapy and continuous health plan enrollment from 6 months pre-index or first MM diagnosis date until ≥ 12 month post-index date unless pts died < 12 months post-index date. First line of therapy (LOT1) included all Txs prescribed ≤ 60 days post-index date. Among pts who progressed to LOT2, median time to next Tx (TTNT) was estimated from a Kaplan–Meier curve as duration from LOT1 start until the earliest of an addition/switch/restart of non-maintenance MM Tx, or dose increase from maintenance to relapse therapy. Pts who progressed to LOT2 prior to and after median TTNT were included in the early and delayed progression cohorts, respectively. Annual all-cause and MM-related healthcare costs estimated from a generalized linear model were compared between doublet therapy pts in LOT1 in the early and delayed progression cohorts. Results: Of 3,768 MM pts with LOT1, 36.1% progressed to LOT2 with median TTNT of 302 days; 81.3% pts initiated doublet therapy in LOT1, of which 19.2% (n = 589) and 17.3% (n = 533) were included in the early and delayed progression cohorts, respectively. Pts in the early progression cohort were younger and incurred higher all-cause inpatient ($17,332 vs $10,455), outpatient hospital ($18,183 vs $15,097), emergency department ($462 vs $395), office ($37,728 vs $29,174), and total costs ($130,948 vs $108,003) compared with the delayed progression cohort. Similarly, the early progression cohort had higher MM-related total costs ($87,284 vs $72,150) including inpatient and outpatient costs (all P< 0.001). All-cause and MM-related pharmacy costs were similar between cohorts. Conclusions: Early progression after LOT1 is associated with substantially higher economic burden indicating the need for future studies of therapies that delay progression and potentially result in cost savings.
Can administrative data improve the performance of clinical trial economic analyses?
Authors: Hanna Timothy , Nguyen Paul , Pater Joe , O'Callaghan Christopher J. , Mittmann Nicole , Earle Craig , Tu Dongsheng , Jonker Derek J. , Hay Annette E.
Published: September 2018

2

Background: Economic analyses of trials often rely on trial-collected health resource utilization data, which is expensive and may be incompletely recorded. We investigated whether routinely collected health administrative data (RCD) can be utilized to improve trial economic analysis performance. Methods: Health administrative data was probabilistically linked to Ontario patient data from the Canadian Cancer Trials Group CO.17 trial (n = 572), evaluating cetuximab plus best supportive care (n = 75 linked Ontario patients) versus best supportive care alone (n = 73). Completeness of trial data was compared to RCD. Cost-effectiveness in 2007 Canadian dollars was determined using RCD up to trial date of last contact (DOLC), and up to RCD DOLC. Incremental cost effectiveness ratio (ICER) confidence intervals (CI) were determined using bootstrapping with 5000 iterations. Cost-effectiveness acceptability curves were determined. Sensitivity analyses were performed. Results: Among 148 Ontario patients, up to trial DOLC, RCD vital status was concordant in > 96%. 29 deaths occurred after trial DOLC. Up to trial DOLC there were 34 net additional hospitalizations in RCD, and 28 net additional emergency room visits. Using RCD, total cetuximab group costs were $3,023,034, and $1,191,118 for best supportive care alone up to trial DOLC. Cost difference was driven by cetuximab drug costs ($1,531,370). Using RCD, the ICER was $211,128 per life-year gained (90% CI: $101,396, $694,950) when data was limited to trial DOLC, and $164,378 (90% CI: -$138,260, $644,555) using routinely collected data DOLC. ICER estimates were similar to the original economic analysis using trial-collected data ($199,742 (95% CI $125,973, $652,492)). Estimates were robust in sensitivity analysis. Conclusions: Administrative data were more complete than trial-collected utilization data, even under optimal conditions. There was also longer follow-up. We found that cost differences were robust to varying costing assumptions. Our findings demonstrate the potential of administrative data sources to relieve institutions, sponsors and patients from the burden of collecting key utilization information which requires considerable effort and cost.
PROeverywhere: Bridging the implementation gap of patient-reported outcomes with a mobile app.
Authors: Hung Kin Wai (Tony) , Banerjee Natasha , Miller Jeffrey M.
Published: September 2018

203

Background: Patient reported outcome (PRO) data are critical for informing patient-centered care and have been shown to enhance our ability to communicate with patients, to control their symptoms, and to impact their survival. However, PRO data are not commonly collected in routine cancer care due to implementation challenges such as cost, technological rigidity of existing electronic health records, and misalignment of stakeholders’ incentives. Methods: In an effort to bridge the unmet needs of PRO collection and integration into routine cancer care, we aim to develop an effective, scalable, and sustainable symptom monitoring and management system that can be accessible worldwide. The system was developed using Xcode, the integrative development environment of Apple Inc., with the Swift programing language. Results: On Nov 28th, 2017, we launched a free, mobile PRO application on the Apple App Store – PROeverywhere. PROeverywhere is designed for reporting twelve common symptoms from the National Cancer Institute’s Common Terminology Criteria for Adverse Events. These symptoms include pain, fatigue, nausea/vomiting, appetite loss, diarrhea, constipation, shortness of breath, depression, anxiety, insomnia, memory problems, and neuropathy. Symptoms are reported in a 5-point scale – no symptom, mild, moderate, severe, and disabling. PROeverywhere has the functions to record symptoms, summarize the reporting in printout, and automatically store and analyze the input into graphical interpretations. Updates to PROeverywhere will be released in July 2018, with additional features that include longitudinal tracking dashboard, emoji scale, Spanish questionnaire, and “social networking” capability to connect users with potential to allow remote, real-time, reporting and monitoring. PROeverywhere is downloadable worldwide and securely powered by Google Firebase. Conclusions: PROeverywhere is developed to enable PRO data to be shared more easily and regularly in routine cancer care. Implementation of this free mobile application would allow for consistency in collection of PRO data with the potential to impact patient outcomes globally.
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.