bluuebunny/crossref_metadata_2025 huggingface dataset:
Multicancer hereditary syndrome testing: Genetic counselors’ perspectives.
Authors: Weldon Christine B. , Liang Su-Ying , Phillips Kathryn A. , Douglas Michael P. , Scheuner Maren Theresa , Kurian Allison W. , Schaa Kendra , Roscow Breanna , Erwin Deanna , Trosman Julia R.
Published: September 2021

106

Background: The accessibility of cancer hereditary syndrome testing has increased, and the cost has declined significantly in the past few years. We conducted a national, quantitative survey of genetic counselors (GCs) to assess their perspectives on what influences hereditary cancer genetic testing decisions and practices, with a focus on cost. This survey was funded by NIH, conducted by UCSF TRANSPERS, and supported by the National Society of Genetic Counselors(NSGC). Methods: The survey was developed through literature review, expert interviews, and a pilot. Sent to the NSGC Cancer Special Interest Group via email. Chi-square tests were used to examine variability. Results: The survey response rate was 56% (202/363). Multiple hereditary cancer syndrome tests are discussed often/always by 86% of genetic counselors (GCs).The existence of an institutional protocol on multiple hereditary cancer syndrome testing was reported by 35.4% of GCs. When asked about GC counseling encounters, GCs report insurance rarely/never pays for: 25.2% pre-test in-person,39.7% for pre-test tele-genetics, 35.4% post-test in-person, and 52.9% post-test tele-genetics. GCs rated clinical factors higher than cost as influencing decision for multiple hereditary syndrome cancer testing (table); the total cost of the test was least important. These patterns were similar across the GCs institution types and years in practice. Conclusions: We found consistent use of multiple hereditary cancer syndrome tests, with less focus on cost, out-of-pocket, and insurance coverage and more of a focus on clinical indicators. GCs reported challenges with reimbursement for GC counseling encounters. The shift toward more genetic counseling encounters via tele-genetics necessitates evaluation of insurance reimbursement.[Table: see text]
Feasibility of tele-chemotherapy administration to improve access to rural cancer patients.
Authors: Thota Ramya , Gill David Michael , Mullalley Megan , Sandhu Zoya , brant jamie , Bell Mckenzie , Reese Zachary , Haslem Derrick S.
Published: September 2021

112

Background: Telehealth improves access to cancer care for patients with cancer in rural communities. It allows qualified infusion nurses to administer chemotherapy in smaller rural towns under supervision by health professionals from larger tertiary sites. Here we would like to share our institutional experience in tele-chemotherapy administration to patients in rural Utah. Methods: We collected patient data including treatment regimens administered at our tele health sites from March 2019 to February 2021. Results: A total of 133 unique patients received 1073 cycles of low to intermediate risk treatment regimens. 42 unique regimens including intravenous and oral chemotherapy drugs, immune therapy and targeted drugs were administered at four rural facilities including Cassia Regional Center, Sanpete Valley Hospital, Severe Valley Hospital and Heber Valley Hospital in Utah. 52 physicians located at tertiary sites were involved in tele-chemotherapy administration. In addition to Medicare, Medicaid, the tele chemotherapy was covered by four commercial payers including Blue Cross Blue Shield, Select Health, Tricare and United Healthcare. Conclusions: Tele chemotherapy administration is feasible and allows improved access to cancer patients in rural communities. We aim to expand current project to capture the patient satisfaction and clinical outcomes including treatment delays, dose modifications, infusion reactions, hospitalizations or emergency visits.
Determinants of urologists’ adherence to active surveillance follow-up protocol for low-risk prostate cancer.
Authors: Hwang Soohyun , Birken Sarah A.
Published: September 2021

12

Background: The National Comprehensive Cancer Network (NCCN) guideline offers a guideline for follow-up care for patients with low-risk prostate cancer on active surveillance (AS). However, in practice, 70% of patients receive follow-up care that is not guideline-adherent, characterized by insufficient or excessive surveillance testing, potentially diminishing AS effectiveness and contributing to poor patient outcomes. The objective of this study is to identify provider- and organization-level determinants of guideline-adherent AS follow-up care. Methods: We used in-depth semi-structured qualitative interviews with 13 United States urologists to examine determinants of urologists’ adherence to the active surveillance follow-up guideline. Guided by the combined use of the Consolidated Framework for Implementation Research, which focuses on organization-level determinants, and the Theoretical Domains Framework, which focuses on provider-level determinants, we used template analysis to identify multilevel determinants of urologists’ adherence to guideline-recommended AS follow-up care. Results: Relevant determinants were comfort with varied utilization behaviors of the guideline, perspectives on the prostate biopsy procedure, and the degree of structure within the practice setting. At the provider level, there was variation in how urologists provided AS follow-up care. All urologists referred to the NCCN guideline; however, most urologists adapted the guidelines to their needs and/or comfort level (e.g., following a subset of recommendations; adapting the interval/frequency of serial tests). Most providers felt that strictly adhering to the repeated biopsy aspect of the guideline was difficult because of concerns about fitting everybody to one type of frequency that does not stratify patients by risk. Others reflected on patients expressing physical discomfort and concerns of infection stemming from the biopsy procedure. At the organization level, urologists in a structured practice environment had the tendency towards providing NCCN guideline-adherent care whereas urologists practicing in settings with less organization relied more on individual discretion, which created room for flexibility with the care that they provide. Conclusions: Both provider- and organization-level determinants affected urologists’ provision of NCCN guideline-adherent follow-up care which may partially explain why patients eventually fail to receive guideline-adherent AS follow-up care. Findings call on the need for multilevel strategies to increase adherence or to modify existing guidelines to reflect the need at multiple levels.
Disparities in clinical trials participation in a vertically integrated care delivery system.
Authors: Megahed Ahmed , Buchschacher Gary L , Ho Ngoc J. , Haque Reina , Cooper Robert Michael
Published: September 2021

128

Background: Sparse data exists on the diversity clinical trial enrollment in community settings. This information is important to ensure equity of care and generalizability of results. Methods: We conducted a retrospective cohort study of members of an integrated healthcare system diagnosed with invasive malignancies (excluding non-melanoma skin cancers) between 2013-2017 to examine demographics of the oncology population compared to those who enrolled in a clinical trial. Logistic regression was used to assess correlates of clinical trial participation, comparing general and screened samples to enrolled sample. Odds ratios were adjusted for gender, geocoded median household income, cancer type, and stage. Results: Of the 84,977 patients with a cancer diagnosis, N = 2606 were screened for clinical trial participation and consented, and of those N = 1372 enrolled. The percent of Latinx (25.8% vs 24.0%; OR 0.9? CI 0.72-1.05) and African American/Black (10.9% vs 11.1%; OR 0.92 CI 0.75-1.11) clinical trial participation mirrored that of the general oncology population, respectively using Non-Hispanic Whites as reference. Asian/Pacific Islander had equal odds of clinical trial enrollment (OR 1.08 CI 0.92-1.27). The enrolled population was younger than the general oncology population. Conclusions: This study suggests that in an integrated healthcare system with equal access to care, the clinical trials population is well representative of its general oncology population.[Table: see text]
Disparities in cancer care delivery during the COVID-19 pandemic: An update of a prospective, cross-sectional study.
Authors: Hsu Emily , Chhabra Jyoti , Serrano Oscar , Bade Katarina , Menendez Alvaro G.
Published: September 2021

136

Background: Impact of COVID19 on cancer care delivery and outcomes remains unknown. Few trials have investigated patients’ perceived risks and benefits, and cancer care delivery (CCD) alterations related to COVID19. We sought to identify differences on behaviors and social determinants of health in Hispanics and other underrepresented populations (H/UP) compared to the general population (GP). Methods: An IRB-approved validated 27-item questionnaire was offered in English and Spanish to all pts receiving cancer care at participating cancer centers over a 6 month period. Examined variables included demographic information, social risk and behavioral factors, preferred sources of health information, and overall satisfaction with CCD during the pandemic. Results: A total of 245 pts were enrolled in the study. Compared to GP, H/UP’s perceived risk of COVID19 was higher with 92.4% vs 85.2% (p = 0.000) more likely to cancel or avoid social gatherings and 69.2% vs 32.1% more likely to change daily routine. H/UP appeared more concerned with personal and financial safety; if unable to find work/get paid for 2 weeks, 24.1% H/UP vs 13% GP would struggle to keep up with expenses. 33.7% H/UP vs 8.6% GP had concerns on ability to secure food and consider COVID19 a major threat to their health (63.9% vs 42.6%, p = 0.003) and financial situation (61.4% vs 35.8%, p = 0.001). H/UP’s perceived benefits of protective measures is higher with 97.4% vs 90.7% routinely practicing social distancing (SD) and 92.8% vs 64.2% in agreement with punitive actions for not following SD. Analysis demonstrated no significant difference by gender, level of education, marital status, however Hispanic ethnicity and Spanish as primary language were significant variables (p = 0.000) in perceived risks and satisfaction with CCD. No major differences were noted on sources of health information although more H/UP relied on social media (26.5% vs 24.7%). H/UP appeared more skeptical about availability and safety of targeted vaccines (28.2% vs 14.8%, p = 0.001). H/UP were less satisfied with CCD during the pandemic (72.1% vs 82.1%, p = 0.024) and also perceived CCD alterations (19.2% vs 7.4%). Conclusions: COVID19-related societal, financial, health and personal fears are increased in H/UP which likely negatively affects quality of life of these at-risk populations. H/UP’s trust in SD recommendations is heightened although linguistically and culturally appropriate information may be deficient. H/UP were more skeptical of the safety and availability of the vaccine, which is consistent with recent reports suggesting deeper fears of experimentation. Interventions aimed to decrease these differences could incorporate standard communications with special attention to social media.
Adverse lifestyle behaviors among childhood cancer survivors with cognitive impairment: The Project Forward Cohort.
Authors: Ng Ding Quan , Miller Kimberly Ann , Thomas Stefanie Marie , Freyer David R. , Milam Joel , Chan Alexandre
Published: September 2021

138

Background: Childhood cancer survivors (CCS) are often impacted by cancer-related cognitive impairment (CRCI), requiring long-term follow-up care. It is unknown whether survivors reporting CRCI are at higher likelihood to suffer from adverse lifestyle behaviors such as smoking and vaping. Using the Project Forward cohort, we analyzed the prevalence of CRCI and its association with substance abuse. Methods: The Project Forward study surveyed adolescent and young adult CCS between 2015 to 2018 to evaluate the quality of cancer follow-up care. Associations between self-reported CRCI and adverse lifestyle behaviors were examined in multivariable logistic regressions, adjusting for covariates: cancer type, treatment intensity, race/ethnicity, gender, and age at diagnosis. Stratified analysis by recency of latest cancer follow-up care was performed to examine its impact on the risk of substance abuse among CRCI patients. Results: The cohort comprised 1,106 CCS, with median ages of 25.5 years (IQR: 22, 29) at survey completion and 13 years (IQR: 7, 16) at diagnosis, with over half (n = 570, 51.5%) were being Hispanic. A total of 144 (13%) patients self-reported CRCI, with the highest prevalence observed among brain cancer (25.4%) and leukemia (13.3%) survivors. Cancer-related follow-ups were more frequently observed among survivors reporting CRCI, comparing to non-CRCI survivors (66.7% vs 56.9%, p = 0.030). After adjusting for confounders, survivors reporting CRCI were at higher odds to vape with e-cigarettes than those without CRCI (OR = 2.24, 95% CI = 1.24–4.09, p = 0.008). Among those who did not engage any recent cancer follow-up care (n = 455), CRCI was associated with 2.9 times the odds of vaping with e-cigarettes (OR = 2.9, 95% CI = 1.07–7.88, p = 0.037). No association was observed between CRCI and the use of cigarettes, alcohol, or marijuana. Conclusions: Vaping is more prevalent among CCS reporting CRCI, especially those who are less likely to attend follow-up care. Our data suggests the importance of encouraging long-term follow-ups to monitor adverse lifestyle behaviors in CCS experiencing cognitive symptoms and provide timely interventions.
Influence of social determinants of health on oncology care quality rankings.
Authors: Urick Benjamin , Burbage Sabree , Baggett Christopher , Lafata Jennifer Elston , Sanoff Hanna Kelly , Trogdon Justin G.
Published: September 2021

139

Background: Adjustment for social determinants of health (SDOH) when assessing provider care quality remains limited. The Oncology Care Model (OCM), for example, includes low-income status/dual eligibility (LIS/DE) as a part of the risk adjustment model for some quality measures, but does not account for any social risk variables in the hospice measure. No measures within the OCM account for additional social risk factors beyond LIS/DE such as patients’ race, rurality, and social deprivation. Additional SDOH adjustment could increase the accuracy of provider quality rankings and better align performance-based payments with true provider quality. Methods: North Carolina Medicare claims from 2015-2017 comprised the data for this study. The year 2015 was used to establish baseline covariates. Episodes were attributed to physician practices’ Tax Identification Number (TIN), lasted 6 months, and were divided into performance years beginning 1/1/2016 and 7/1/2016. Three measures were used: 1) all-cause hospital admissions; 2) all-cause emergency department visits or observation stays; and 3) admission to hospice for 3 days or more among patients who died. SDOH included patient-level race as well as county-level rurality and social deprivation, measured using the social deprivation index (SDI). TIN-level scores with and without expanded SDOH variables were divided into quintiles and compared descriptively as well as using weighted kappa statistics. Results: No SDOH were significantly associated with the hospitalization outcome (P = 0.118-0.944). For the ED measure, Black patients and rural patients were significantly more likely to have an ED visit or observation stay during an episode than white patients and urban patients (P < 0.0001). For the hospice measure, greater SDI values were associated with less hospice use (P < 0.05). Accordingly, including SDOH variables for ED visit/observation stay and hospice measures had a greater impact on TIN rankings than for the hospitalization measure (Table). Conclusions: Because quintile rankings in determine potential shared savings under models like the OCM, differences in rankings due to additional SDOH variables could have a meaningful impact on TIN-level revenue. Additional work is needed to expand the scope of patient-level SDOH variables used for risk adjustment and to explore differences across TINs which contribute to SDOH-sensitive changes in rankings.[Table: see text]
Race, insurance status and treating facility type associated with completeness of medical record in patients with breast cancer.
Authors: Yaghi Marita , Bilani Nadeem , Jabbal Iktej , Elson Leah , Bou Zerdan Maroun , Liang Hong , Nahleh Zeina A.
Published: September 2021

143

Background: The National Cancer Database (NCDB) is a large registry that collates real-world medical record data from millions of patients in the United States. A previous published study using the NCDB found that gaps in the medical record were associated with worse overall survival outcomes. We investigated cases of breast cancer in this registry to understand which factors were predictive of records with missing data. Methods: We screened for missing data in 54 clinical parameters documented by the NCDB pertaining to the diagnosis, workup, management and survival of patients with breast cancer diagnosed between 2004 and 2017. We performed univariate statistics to describe gaps in the dataset, followed by multivariate logistic regression modeling to identify factors associated lack of completeness of the medical record – defined as the presence of > 3 missing variables. Results: A total of n = 2,981,732 patients were included in this analysis. The median number of missing variables per record was 3 (5.6% of clinical parameters surveyed). 52.1% of records had ≤ 3 variables missing, while 47.9% had > 3 variables missing. Predictors of a record with missing data in > 3 variables were: age, race, insurance status and facility type . Regarding race, we found that records of Asian patients were less likely to have missing data as compared to records of White patients (OR 0.75, 95% CI: 0.74-0.76, p < 0.001). Conversely, there was no difference in completeness of the medical record between Black and White patients (OR 0.99, 95% CI: 0.99-1.01, p = 0.890). Patients with private insurance (OR 0.77, 95% CI 0.76-0.79, p < 0.001), or Medicaid (OR 0.65, 95% CI 0.64-0.67, p < 0.001) or Medicare (OR 0.66, 95% CI 0.64-0.67, p < 0.001) were also less likely to have missing data compared to uninsured patients, with patients on private insurance being the least likely to have incomplete records. Finally, patient records from academic programs (OR 0.91, 95% CI 0.90-0.92, p < 0.001) were less likely to contain > 3 missing variables compared to records from patients treated at community cancer programs. Conclusions: Despite high fidelity of NCDB data, social determinants of health including insurance status and treating facility type, were associated with differences in the completeness of the medical record. Improvements in documentation and data quality are necessary to optimize use of real-world data in cancer registries. Further research is needed to determine how these differences could be independently associated with inferior outcomes.
Predictors of high financial distress in a national, multiethnic sample of patients with cancer.
Authors: Ragavan Meera Vimala , Cunningham Rosie , Incudine Andrea , Borno Hala , Stivers Thomas
Published: September 2021

149

Background: Financial toxicity is characterized by financial burden that patients face. Patients and providers are seldom aware of available resource to help mitigate this growing problem. To date, our understanding of the myriad of financial repercussions of cancer treatment remains limited. Prior published research has largely been single center, thereby limiting generalizability across the United States. This study leveraged a national, multi-ethnic sample of patients who receive financial support services including comprehensive financial assistance, navigation, planning, and a guidebook with relevant resources from a non-profit entity (Family Reach) to evaluate financial stress in during cancer treatment. Methods: Patients were identified for study participation if they received at least one financial support resource from Family Reach between 1/1/2020-6/30/2020. An 11-item survey was sent electronically to all eligible participants who were given a one-month time frame to complete. A multivariate model was employed to identify sociodemographic predictors of high financial distress. Results: A total of 832 patients were contacted, of whom 330 (40%) completed the survey. Demographic information is included in table. Patient reported financial distress in the prior week was high, with 46% of patients reporting a distress level of seven or higher on a ten-point scale. In a multivariate regression, Hispanic/Latinx ethnicity was associated with a higher distress rating and higher patient reported financial stress. Lower annual household income was associated with lower reports of feeling in financial control, lower reports of meeting monthly expenses, and higher reports of financial stress. Conclusions: Patient-reported financial distress was high in a national sample of patients with cancer who had utilized at least one financial resource provided by Family Reach. Hispanic ethnicity and Lower Annual Income were predictors of higher patient-reported financial distress. Larger samples are needed to confirm these patterns. Delivery systems should develop targeted interventions, including referrals to organizations providing financial assistance, for patient populations at high risk for financial toxicity. [Table: see text]
Sociodemographic differences in patient-reported pain and pain management of head and neck cancer patients in a community oncology setting.
Authors: Osazuwa-Peters Nosayaba , Larsen Rylan , Patel Amila , Misra Sanjit , Pearson Ben , Smith Blaine , Canick Julia , Kuziez Duaa , Rohde Rebecca L
Published: September 2021

150

Background: There are currently 500,000 head and neck cancer (HNC) survivors in the United States. Pain is common among survivors and associated with adverse quality of life and outcomes. There is however a lack of data on pain management in the community oncology setting, where a growing number of patients may be receiving long-term care. We described sociodemographic correlates of patient-reported pain among HNC patients receiving care in the community setting. Methods: We used data from Navigating Cancer, a nationwide, community-oncology, patient-reported outcomes database that include electronic patient-reported outcomes (ePROs) from 253 cancer clinics and over 1 million cancer survivors. We identified a retrospective cohort of patients diagnosed with HNC after January 1, 2017, with at least one record of patient-reported pain through nurse triage. We characterized demographic and clinical factors associated with any reported pain, and pain resolution by new pain prescription, based on race (white vs. non-white patients), and other sociodemographic characteristics. Results: Our cohort included 3,762 patients, 62.8% white, 45.3% married, with an average age of 66.0 years. Of these, 652 patients (17%) reported at least one pain event during study period. After adjusting for covariates, there was no statistically significant difference in the odds of any reported pain between white vs. non-white patients (aOR = 0.81; 95% CI 0.57, 1.15). However, we found that white HNC patients were significantly more likely to be provided a new prescription for pain management more than non-white patients, (aOR = 4.58; 95% CI 2.23, 9.38). Other factors associated with prescription of new pain prescription included being single/unpartnered (aOR = 1.34; 95% CI 1.03, 1.75) compared to being married/partnered, having Medicare (aOR = 3.07; 95% CI 1.59, 5.93) or commercial insurance (aOR = 2.88; 95% CI 1.54, 5.38) compared to Medicaid. Additionally, male patients were significantly less likely to receive new prescription compared to females (aOR = 0.48; 95% CI 0.37, 0.61). Conclusions: One-in-six HNC patients in the community oncology setting reported pain, and while there were no racial differences in any pain report, white patients were significantly more likely to receive new pain prescription, as were those with Medicare or commercial insurance. There may be disparity in the management of reported pain among HNC survivors based on race.
Social toxicity among patients with cancer diagnosis in Saudi Arabia: A descriptive phenomenological qualitative study.
Authors: Jazieh Abdul-Rahman , Jradi Hoda , Da'ar Omar B. , Alkaiyat Mohammad , Alolayan Ashwaq
Published: September 2021

151

Background: The objective of this study was to describe the social and financial experience of cancer patients throughout the continuum of their disease. Methods: A descriptive phenomenological qualitative study was conducted in the Oncology Department in King Abdulaziz Medical City in Saudi Arabia. Four focus groups, including 15 cancer patients (9 women and 6 men) and 11 care givers (5 females and 6 males), and face-to-face interviews among 29 healthcare workers including physicians, nurses, social workers, and health educators were conducted. All discussions were transcribed verbatim and entered into NVIVO software and themes were extracted and examined. Results: Focus group discussions and interviews revealed a range of social and financial themes such as experiencing fear of spousal abandonment, concerns of becoming a social and financial burden to the family, poor physical appearance, and hair loss for females. Experiencing depression, social isolation, fear of infertility, and fear of job loss for both genders. Males were mostly affected by facial hair loss and sexual dysfunction. An emerging theme regarding the elderly patient was neglect by family members and isolation from society with the intention of protecting them. Acceptability of disease and submission as an act of religiosity was a general positive feeling. Conclusions: This descriptive phenomenological qualitative study characterized the significant social and financial toxicities among patients with cancer diagnosis in Saudi Arabia. Such phenomena and context are expected to enable a deeper understanding of oncology professionals’ experiences in order to better deliver patient-centered care as a component of a holistic approach.
Health-related quality of life (HRQOL) in patients (pts) with advanced gastric cancer/gastroesophageal junction cancer (GC/GEJC) or esophageal adenocarcinoma (EAC): Results of nivolumab plus chemotherapy (NIVO+chemo) versus chemo from CheckMate 649.
Authors: Elimova Elena , Wyrwicz Lucjan , Blum Steven I. , Xiao Hong , Li Mingshun , Kondo Kaoru , Davenport Eric , Wang Jinyi , Hunter Shannon , Moehler Markus H.
Published: September 2021

167

Background: CheckMate 649 (NCT02872116) is a randomized, open label phase 3 study in first line (1L) treatment of pts with advanced GC/GEJC/EAC. Primary analysis results showed statistically significant improvement in overall survival (OS) for NIVO+chemo vs. chemo in all randomized pts. We present HRQOL results for these pts, included as an exploratory study objective. Methods: HRQOL was assessed using EQ-5D-3L (EQ-5D) and Functional Assessment of Cancer Therapy–Gastric Cancer (FACT-Ga). Assessments were performed at baseline (BL), every 6 weeks during treatment and during follow-up. Change from BL EQ-5D Visual Analog Scale (VAS), Utility Index (UI) and FACT-Ga scores were analyzed using mixed models. Time to first symptom deterioration (TTSD), time until definitive deterioration (TuDD), and time to improvement (TTI) were estimated with Kaplan-Meier estimators and stratified Cox models; deterioration/improvement was based on prespecified meaningful change thresholds. Results: 1581 pts were randomized to NIVO+chemo (n = 789) or chemo (n = 792). Among 1359 pts with BL and post-BL patient-reported outcomes (NIVO+chemo, n = 693; chemo, n = 666), BL scores for FACT-Ga total were similar between treatment groups. Least squares mean differences from BL favored NIVO+chemo at most visits for EQ-5D, FACT-Ga total, and Gastric Cancer Subscale (GaCS), and were comparable for other subscales (not shown). TTI generally favored NIVO+chemo (most HR > 1) but was not significantly different between arms. TTSD was longer in NIVO+chemo arm compared with chemo alone (all HRs < 1), except for Emotional Well-Being (WB); only GaCS and FACT-Ga total were significantly different between arms. TuDD showed statistically significant delays in deterioration (HR with CI < 1) for all scores expect Social WB. Conclusions: Compared with chemo alone, the addition of NIVO to chemo maintained HRQoL with a decreased risk of symptom deterioration in patients with previously untreated advanced or metastatic GC/GEJC/EAC. Together with improved OS, these data support NIVO+chemo as a new 1L standard treatment for GC/GEJC/EAC. Clinical trial information: NCT02872116. [Table: see text]
Mixed-methods research to assess care coordination experiences among NCORP clinical trial participants.
Authors: Okado Izumi , Pagano Ian , Su'esu'e Anamalia , Cassel Kevin , Rhee Jessica , Berenberg Jeffrey L. , Holcombe Randall F.
Published: September 2021

168

Background: According to the Institute of Medicine, care coordination (CC) is a critical component of high-quality cancer care; however, many patients with cancer continue to experience fragmented care. CC experiences among cancer clinical trial (CT) participants are relatively unknown. Using mixed methods, we examined perceptions of CC among patients enrolled on therapeutic CTs conducted through the Hawaii Minority/Underserved NCI Community Oncology Research Program (NCORP). Methods: Forty-five CT participants completed the validated Care Coordination Instrument (CCI). The CCI assesses cancer patients’ perceptions of CC overall and across Communication, Navigation, and Operational domains. Data from 45 non-CT participants matched by age, gender, cancer type (breast, GI, other), and clinical stage from our prior studies served as a control group. Paired t-tests were used to compare the CCI scores between the two groups. Three semi-structured focus group interviews were conducted with 14 CT participants in 2020 and 2021. Results: The mean age of CT participants was 61.7 ( SD = 9.4), with the majority being female (67%) and Asian (56%). The most common cancer disease sites were breast (27%) and GI (16%). CT participants reported significantly higher total CC scores than non-participants ( p =.0008). Similar trends were found for Navigation ( p =.007) and Operational ( p =.001) domain scores. 56% of CT participants reported receiving moderate to high-intensity CC assistance from their clinical research professionals (CRPs). Content analysis of focus group discussions revealed that the majority of CT participants’ comments aligned with CC domains; 42% Communication, 30% Navigation, and 28% Operational. Nearly half of focus group discussions centered on CRPs (47%), including CC support provided by CRPs (26%). Other key themes that emerged from the focus groups included general CT experiences (22%) and CRP involvement as an additional benefit to CT participation (15%). Conclusions: Clinical trial participants perceive better CC than non-CT participants, partly attributed to CC support provided by CRPs. Our findings highlight a generally unrecognized yet integral role of CRPs as part of a cancer clinical trial care team. CRP involvement may be an additional benefit of CT participation and contribute to improved quality and value for patient-centered cancer care.
Association of treatment type with patient-reported quality of life in cancer distress screening.
Authors: Roy Mohana , Rosenthal Sarah , Shah Manan P , Khaki Ali Raza , Bozkurt Selen , Seto Tina , Blayney Douglas W. , Hernandez-Boussard Tina , Ramchandran Kavitha
Published: September 2021

178

Background: Routine distress screening is recommended for all patients with cancer. In 2015, Stanford Cancer Center implemented such screening using a modified PROMIS-GH questionnaire. With the recent growth of oncology drugs, novel medications have been perceived as better tolerated than chemotherapy. We analyzed patient reported quality of life with global mental health (GMH) and global physical health (GPH) scores for different medication classes. Methods: Patients who completed a questionnaire at our center between 6/1/2015 and 12/31/2020 were included. Medications were classified as chemotherapy, targeted therapy, endocrine therapy, or immunotherapy using guidance from SEER.Rx ontology. Baseline (B) and treatment (Tx) questionnaires were completed before any treatment initiation of each medication type and within 3 months of each treatment, respectively. GPH and GMH scores were calculated using PROMIS T-scores stratified by medication type for B and Tx questionnaires. We analyzed for differences based on demographics and diagnoses. Clinically significant differences were defined as a 3-point difference in T-scores, which then prompted statistical comparison with t-tests to compare the B and Tx scores to each other and to the US population mean of 50. Results: We analyzed 28,180 questionnaires from 11,644 patients (59% women, median age 64; 23% stage I and II, 12% stage III, 23% stage IV, 51% missing). B and Tx mean GMH scores did not differ clinically compared to the US mean or to each other (baseline: 49.03 +/- 9.16, post: 48.5 +/- 9.1). However, both mean GPH scores were statistically and clinically lower (baseline: 44.2+/- 10.38, post: 42.4 +/- 10.1,) compared to the US mean (p < 0.001). Changes in scores by treatment category are shown in the table below. There was a statistically significant difference in post-treatment GPH scores for chemo-immunotherapy patients when compared to both corresponding baseline scores (p < 0.001) and post treatment chemotherapy alone scores (p < 0.001). There was no clinically significant difference in scores when stratified by age, sex, primary language, insurance, disease stage or type. Conclusions: In this large retrospective study, we found that patients being treated for cancer did not report worse GMH scores compared to the US mean population, but do report lower GPH scores. While most scores varied little relative to other treatment types, those receiving chemo-immunotherapy had lower GPH scores when comparing baseline to treatment and to the US mean, warranting further investigation, given increasing use.[Table: see text]
Value and use of patient reported outcomes in sarcoma clinic through GetWell Loop app.
Authors: Voshtina Ensi , Charlson John A.
Published: September 2021

179

Background: Symptom monitoring in cancer care through patient reported outcomes has been used as an approach to improve symptom detection and communication. Through monitoring of patient symptoms via a systematic way, previous studies have shown a reduction in ED visits and hospital admissions, an enhancement in patient-clinician communication and overall patient satisfaction and wellbeing. In this study, we evaluated outcomes of patient reported data by using the GetWell Loop app to help determine if it facilitates cancer care and improves clinical outcomes. Methods: We performed a retrospective, single-center analysis of sarcoma patients age > 18 who between December 2019 to January 2021 received systemic treatment and were enrolled to use GetWell Loop app to report their treatment related outcomes. We asked patients how they are feeling on a systematic basis post treatment by using a series of questions related to their therapy and potential symptoms. Through the use of GetWell Loop, patients are able to record symptoms information and prompt evaluation by a healthcare provider if they report severe or rapidly changing symptoms. Descriptive statistics were used to summarize use of the GetWell Loop through patient surveys, app generated data, and data available in EPIC electronic medical record. We noted the number of yellow (moderate) and red (severe) alerts generated by patient responses and the corresponding alert trigger to health care provider response. Healthcare provider communication and interventions were recorded, as were hospitalizations and ED visits while using the app. Results: A total of 75 patients were invited to join enrollment. Of those, 54 activated the app, with an activation rate of 72%. Engagement rate was 61% and 74 total alerts were generated. Of the severity of symptoms leading to an alert, 28% were red alters and 72% were yellow alerts. Red alerts most commonly comprised of decreased fluid intake, constipation, and fevers. The majority of red alert symptoms lead to an intervention from nursing staff that started with a phone call, while a minority of interventions were in app messages with the patient. Five red alerts led to an ED visit. The majority of yellow alert symptoms were addressed through in app messages. Both clinical staff and patients felt it helped them stay connected. Patients were most adherent with the first treatment. Patient satisfaction was 87.5% with the app usage. Conclusions: Using patient reported outcomes by using the GetWell Loop app yielded an overall positive patient experience. It provides an opportunity to intervene early with high risk patients and prevent ED visits. Focusing on the first cycle of a regiment and subsequent cycles if high risk seemed to provide the most benefit. There is utility to expand to other disease teams and use the app for survivorship support as well.
Development of a virtual intervention for patients with lung cancer transitioning to surveillance after curative treatment.
Authors: Massad Katina , Traeger Lara , Greer Joseph A. , Temel Jennifer
Published: September 2021

181

Background: Patients with lung cancer who are treated with curative intent are rarely included in quality-of-life (QOL) intervention research in cancer, and the transition from treatment to surveillance is an understudied phase in lung cancer. Given the high risk of recurrence in this population, we aimed to 1) characterize the QOL challenges of patients with lung cancer who complete curative treatment and 2) develop and refine an intervention to support patients during their transition to surveillance. Methods: We first conducted semi-structured interviews to explore the QOL challenges of patients in transition from lung cancer treatment to surveillance (n = 12). Interviews were transcribed, coded, and analyzed using a thematic analysis approach. Results were used to develop the content, timing, and delivery of a cognitive behavioral intervention to enhance patient QOL during the transition to surveillance. We conducted an open pilot with patients within 3 weeks of completing lung cancer treatment (systemic therapy +/- radiation) to test and refine the intervention (n = 5). Mixed methods data were collected to evaluate intervention feasibility, acceptability, and areas for refinement. All study procedures were conducted at an academic medical center in the New England region. Results: Qualitative study results indicated that during the transition to surveillance, patients with lung cancer (6 female, 6 male; age range: 26-76) faced unexpected challenges in coping with residual symptoms (e.g., dyspnea, fatigue), uncertainty about future health, and changes in close relationships. Results were used to develop a 5-session intervention to address patient challenges with a coping skills framework that balanced acceptance-and change-oriented approaches. Study clinicians delivered intervention sessions remotely (video or telephone). Of 6 patients approached, 5 enrolled in the pilot (all female; age range: 62-73; 1 declined due to time commitment). Pilot patient feedback indicated that the intervention timing and content targeted patients’ current needs and concerns. Patients valued the opportunity to normalize and address current challenges and to cope with difficult emotions. Results suggested further refinements to the timing for patient recruitment and the order of session content to enhance skills uptake. Conclusions: Patients who are treated for lung cancer with curative intent may face unexpected QOL challenges related to residual symptoms, health uncertainty, and changes in close relationships during the transition to surveillance. Results enhance our understanding of lung cancer survivorship and provide a framework for addressing QOL challenges in this population. Remote delivery of this manualized intervention supports scalability for survivors of cancers with high risk of recurrence. This model will be tested further in a larger scale efficacy trial. Clinical trial information: 04450043.
Patient and clinician perceptions of a digital patient monitoring program in the community oncology setting: Findings from the Texas Two-Step Study.
Authors: Patt Debra A. , Patel Amila , Wilfong Lalan S. , Books Holly , Ortega Lance , Franklin Max , Croft Sarah , Stover Angela M. , Boren Rhonda , Basch Ethan M.
Published: September 2021

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Background: Digital monitoring strategies that include electronic patient reported outcomes (ePRO) measures to monitor symptoms among cancer patients have been shown to be effective in improving patient outcomes in a large academic setting and across several smaller multi-center trials. However, demonstration of clinical utility in the real-world setting must incorporate patient and provider perspectives of ePRO programs to ensure successful implementation. We sought to understand perceptions among patients and clinicians in ePRO digital symptom monitoring program. Methods: Texas Two-Step is an ongoing hybrid implementation-effectiveness study of Navigating Cancer’s ePRO digital monitoring program at Texas Oncology. Patients initiating new systemic therapy for their cancer diagnosis were introduced to the program by their oncologist and enrolled in the program by nursing staff for weekly reporting of symptoms based on a modified version of NCI’s PRO-CTCAE instrument. Feedback surveys were administered to both patients and clinic staff after 6 months of implementation of the program to evaluate the overall experience with the program. Results: 1040 (23.5%) patients and 215 (12.4%) clinicians completed the feedback survey. Of the patient responders, 90% found the program very or somewhat easy for reporting symptoms, 85% moderately-extremely beneficial for having symptoms addressed, and 84% moderately-extremely interested in utilizing the program for future treatments. Of the clinician responders, 73% indicated that that they had a good understanding of the benefit of the program; 70.6% felt confident in their ability to interpret patients’ ePRO responses; 80.3% felt confident in their ability to discuss the program with patients; 71.2% confident in their ability to counsel patients based on ePRO responses; and 55.3% felt the program enhanced communication with patients. Additionally, 59% of clinicians felt the program was beneficial for patients. Conclusions: Patients have a more favorable perception of the benefit of the ePRO program than clinicians. Methods to reduce staff burden and reinforcement of program benefits during training and implementation are imperative to improve clinical utility and will be studied further as the program is optimized. As implementation occurred during the COVID-19 pandemic, this may impact perceptions regarding the tool.
Heart rate: Activity mismatch as a prognostic marker of survival in metastatic non-small cell lung cancer (NSCLC).
Authors: Puri Sonam , Jo Yeonjung , Haaland Benjamin , Kerrigan Kathleen Claire , Patel Shiven B. , Coletta Adriana M , Moynahan Kelly , Cannon Laura , Gumbleton Matthew , Hillman Nicole , Embrey Kelsey , Akerley Wallace L.
Published: September 2021

190

Background: Performance status (PS) is the foundation for clinical trial eligibility criteria and the basis for treatment decisions in the treatment of NSCLC, but it is limited by subjectivity and potential miscommunication between patient, physician, and family. Activity trackers use is widespread and offers the potential to collect a broad range of patient generated data (steps, activity, heart rate, calories, sleep, etc.) to supplement the assessment of PS while minimizing subjectivity. Here we evaluated a clinical observation that elevated heart rate at rest is prognostic of survival. Methods: Patients with metastatic NSCLC were asked to participate in a prospective, observational study of potential prognostic survival factors that included wearing a FitBit tracker with a goal to measure HR-Activity mismatch measured by 2 parameters: 1) Heart Rate-Activity Mismatch (HAM) by percent of time when HR is high and activity is moderate or low over a day; 2) inappropriate HR (iHR) is the ratio of time with elevated HR/sedentary minutes average over a week. Correlation and regression analyses were performed for the initial 55 patients enrolled prior to COVID restrictions using data limited to the average of 7 days with wear > 500 minutes closest to date of consent. Results: We enrolled 55 patients with metastatic NSCLC. There were 35 females and 20 males with a median age of 67 years. A majority of patients were never (38%, n = 21) or former smokers (40%, n = 22); adenocarcinoma (83%, n = 83%) was the most common histology. 30% (n = 17) patients were on 2nd or greater line of therapy. 52 were included for survival analysis and 21 expired with median survival 226 days (149, NA). As average daily steps increased by 1000, the hazard of death decreased by a factor of 0.65 (95% CI: 0.45, 0.93, p = 0.018). As daily average distance increased by 1 mile, the hazard of death decreased by 0.55 (95% CI: 0.33, 0.91, p = 0.019). For HAM, the risk of death increased by 1.14 (95% CI: 1, 1.13, p = 0.046) for every 10% increase in HAM. For iHR < 1 (i.e. high HR when sedentary), the risk of death was 2.84 (95% CI: 1.05, 7.67, p = 0.04) compared those with iHR > 1. Steps, Distance, HAM and iHR were not statistically different by gender. Conclusions: Tracker-based measures of steps/distance and HR-Activity are prognostic of survival in NSCLC and may be useful to supplement evaluation of PS in clinical trials and practice.