tbuckley/cabot-search huggingface dataset:
A decision support intervention for patients with advanced lung cancer amid growing therapeutic complexity: Results of a randomized controlled trial.
Authors: Matthias Villalobos, Laura Unsoeld, Nicole Deis, Anja Siegle, Michael Thomas
Journal: Journal of Clinical Oncology (2024)

12103 Background: In the last decade the therapeutic algorithms in lung cancer have changed dramatically because of the continuous approval of new drugs, leading to steadily improving survival. However, recent studies show that the growing complexity has also led to a negative impact on prognostic awareness and patient-physician communication. In a setting of mostly frail patients, this uncertainty jeopardizes goal-concordant care. Consequently, the guideline recommendations of patient-empowerment and shared decision-making are more important than ever, but evidence-based, comprehensively implemented tools are still lacking. Methods: Randomized controlled, open, mono-center trial (n=138) with two arms: A) use of a decision aid incl. clarification of personal values accompanied by a decision-coaching session vs. B) usual care; stratified block randomization according to the characteristic of preferred decision-making at baseline; primary endpoint: clarity of personal values (Value Clarity Subscale of the Decisional Conflict Scale). Secondary outcomes: patients' self-efficacy (DSES), decisional conflict (DCS), perceived preparation for and involvement in decision-making (PDMS and PICS), general health and emotional state (EQ-5D-5L and HADS). In addition to the descriptive evaluation, group comparisons between the two arms were performed (non-parametric comparison: van Elteren test). Results: The evaluation showed high values for decisional conflict in both groups (total mean score arm A 41,25 and arm B 38,65), exposing relevant conflict in 57,6% of patients, highest in the subscale for information (64,4%) and uncertainty (58,9%). PDMS showed that most patients considered the intervention helpful (“prepare for the next visit with your doctor”: 83,8%, “prepare to talk to your doctor about what matters most to you”: 81,6%, “help to know that decision depends on what matters most to you”: 81,6%). The PICS-subscale “patient information” (active information-seeking behavior) showed a statistically significant difference between the two groups (arm A: 2,86 vs arm B: 3,12; p=0,048). All other outcomes showed no significant differences with equally high DCS scores in both arms’ follow-up. Conclusions: Patients with advanced lung cancer show a strikingly high decisional conflict. Despite successfully empowering perceived preparation for decision-making and decreasing information needs in the encounter with the physician, the intervention was not strong enough to improve significantly the decisional conflict. In a setting of constantly changing oncological information and increasing prognostic uncertainty, tailored support that flexibly adapts to individual needs in decision-making is urgently needed. Clinical trial information: DRKS00028023 .
Sociodemographic characteristics associated with reading online health education materials among patients with cancer.
Authors: Melissa Christina White, Arun Bhardwaj, Amanda Christman, Nosayaba Osazuwa-Peters
Journal: Journal of Clinical Oncology (2024)

12111 Background: Health literacy is an important aspect of navigating cancer care. There are over 18 million cancer survivors currently in the United States, and the number is expected to continue increasing. As new therapeutic options emerge for cancer patients, it is important that patients are able to read and understand literature from their clinical encounters regarding their treatment options and prognosis. Very little real-world data exists describing cancer patients’ reading of cancer information. We aimed to identify baseline characteristics associated with reading online health education materials among patients during active cancer care. Methods: We used retrospective data from Navigating Cancer for individuals ≥18 years, with confirmed cases of cancer between 2017 and 2023. We performed an unadjusted comparison of baseline characteristics between patients who read at least one article versus those who did not read, using chi-square test. Multivariable logistic regression estimated associations between patients’ sociodemographic characteristics and online health education material reading status (read vs. not read). Results: Among 2,903 eligible patients with cancer included in the study, approximately 65% ( n= 1890) read the online health educational materials. On average, females dominated both reading status categories (female read =70%; female not_read =70.98%). However, on average patients in the “not read” category differed with a relatively higher proportion of younger adults (≤40 read =14.81% vs. ≤40 not_read =20.04%) and lower rates of graduate education (graduate read =27.2% vs. graduate not_read =19.74%). In the fully-adjusted model, age group was associated with reading status, with a 31% lower odds for patients with cancer ≤ 40 years (aOR = 0.69, 95% CI 0.55-0.87; P=0.001), and a 38% lower odds for older patients 80+ years (aOR = 0.62, 95% CI 0.42-0.93; P=0.022) relative to patients 40-60 years. Also, education was a significant predictor, with a 36% reduced odds for patients with a high school diploma or less (aOR=0.64, 95% CI 0.53-0.76; P&lt;0.001), but 26% higher odds for graduates (aOR = 1.26, 95% Ci 1.03-1.55; P=0.022), relative to patients with some college education. Similarly, White patients relative to Non-White patients with cancer (aOR = 1.27, 95% CI 1.08-1.49; P=0.004) showed 27% increased odds of reading online educational materials. Conclusions: This study showed an association between age, race, educational status and odds of reading online cancer health education among cancer survivors. Given the focus on patient-centered cancer care and equity in physician-patient cancer communication, it is important that clinical providers recognize factors associated with reading of cancer education materials in their patient population.
Racial and ethnic differences in patient-reported provider communication among patients with cancer.
Authors: Nishwant Swami, Tej A. Patel, Edward Christopher Christopher Dee, Bridgette Thom, Fumiko Chino
Journal: Journal of Clinical Oncology (2024)

12102 Background: Patient-provider communication is essential for improving patient experience and understanding. Given significant care coordination in cancer treatment, effective communication is crucial to ensure timely care, optimal patient outcomes, and shared decision making. Improved patient-provider communication also provides opportunities to promote equitable cancer care. We used national survey data to assess racial/ethnic differences in perceptions of provider communication among patients with cancer. Methods: 2011-2021 biannual data from the US Medical Expenditure Panel Survey was used to select cancer survivors aged ≥18. Primary outcomes included how often patients reported their providers (1) treated them with respect, (2) listened carefully, (3) explained things in a way they understood, and (4) spent enough time. Survey-adjusted percentages with chi-square tests characterized differences in patient-reported communication by racial/ethnic group. Multivariable ordinal logistic regression (MVA) models adjusting for survey year, insurance status, income level, geography, sex, and age generated adjusted odds ratios (aORs) with 95% CI to examine associations of race/ethnicity and provider communication. Results: 5,085 patients representing 10,950,670 survivors met inclusion criteria. American Indian (AI) survivors reported the lowest rates of effective provider communication across all four domains (55%: always listened, 42%: always spent enough time, 58%: always showed respect, and 50%: always explained; p&lt;.001), while non-Hispanic Black (NHB) patients reported the highest rates of effective communication in listening (72%), explaining (70%), respect (74%), and spending enough time (63%; p&lt;.001). On MVA, NHB, non-Hispanic Asian (NHA), and Hispanic (HSP) patients were more likely to report feeling listened to (NHB: OR 1.54 95% CI 1.19-1.98; NHA: OR 1.87 95% CI 1.14-3.05; HSP: OR 1.39 95% CI 1.06-1.83) when compared to non-Hispanic White (NHW) patients. NHB and HSP patients reported feeling more respected (NHB: OR 1.40 95% CI 1.109-1.81; HSP: OR 1.39 95% CI 1.04-1.86) when compared to NHW patients. NHB patients were more likely to report that doctors explained well (OR: 1.31 95% CI 1.02-1.67). Conclusions: This national analysis finds that cancer survivors from historically (and presently) marginalized groups – including Black, Asian, and Hispanic patients - were more likely to perceive effective provider communication when compared to non-Hispanic White patients. Considering known disparities in cancer care access and outcomes, these results may reflect differing patient expectations of effective provider communication or the positive results of concerted efforts to improve provider communication to marginalized groups. Univariate analysis also revealed less effective communication for AI patients, suggesting potential unmet needs.
The role of personalized therapy in cancer associated depression among 10,673 patients.
Authors: Ghada Elnashar, Ellie H. Jhun, Jason Walker, Julie England, Victor Tam, Cathryn Jennissen, Greyson Twist, Pashtoon Murtaza Kasi, James Michael Kelley
Journal: Journal of Clinical Oncology (2024)

12108 Background: Pharmacogenomics can help reduce the trial and error of antidepressant management in cancer patients. Depression is a major contributor to morbidity and mortality in cancer patients. Additionally genetic variation can affect metabolism for many antidepressants in various ways. CYP2D6 and CYP2C19 impact the pharmacokinetics of anti-depressants, which normally take weeks before clinical outcomes are achieved. Here we underline actionable phenotype frequencies stratified by ethnicity/race for CYP2C19and CYP2D6 in patients investigated for cancer, from a depression standpoint. Methods: A retrospective analysis of 10,673 patients genotyped for CYP2D6 and CYP2C19 was conducted (OneOme LLC, Minneapolis, MN). 1,616 tests were found to be ordered by oncologists and analyzed separately as a sample subset. Phenotype and allele frequencies were calculated and compared to self-reported ethnicity/race. Results: See table. Conclusions: This is the largest cohort to date to our knowledge that looks at the role of personalized therapy in cancer associated depression. Our data show that different tested ethnic group can show a predilection towards certain metabolic patterns. PMs may experience an increased risk of side effects with antidepressant therapy, whereas UMs may observe a reduction in treatment efficacy. Utilizing PGx to guide drug selection and dosing for cancer patients with depression can reduce trial and error, limit the burden of a very debilitating disease, and improve patients’ quality of life. Since our analyses showed very similar frequencies, we speculate that cancer patients suffering from depression can benefit from early identification. [Table: see text]
Coping in caregivers of patients with primary malignant brain tumors: A mediation analysis of a randomized controlled trial.
Authors: Deborah Anne Forst, Kelcie D Willis, Sumita Madhok Strander, Jessica Devon Whitman, Daniel Chiu, Nora K. Horick, Kedie Pintro, Areej El-Jawahri, Joseph A. Greer, Jennifer S. Temel, Jamie M. Jacobs
Journal: Journal of Clinical Oncology (2024)

12110 Background: Caregivers of patients with primary malignant brain tumors (PMBT) experience immense psychological distress and lack tailored supportive care resources. In a recently completed randomized controlled trial, we demonstrated that a brief telehealth-based psychological intervention (“NeuroCARE”) for caregivers of patients with PMBT led to decreased anxiety and depression symptoms as well as greater caregiving self-efficacy and coping ability compared to usual care (UC). To explore active drivers of the intervention, we examined whether improvements in caregivers’ coping ability mediated the effects of NeuroCARE on psychosocial outcomes. Methods: From October 2019 to June 2022, we enrolled 120 adult caregivers (mean age 53 years, 83% female, 70% spouse/partner) of patients newly diagnosed with a PMBT to a trial of NeuroCARE vs. UC. Eligible caregivers had elevated baseline anxiety (Generalized Anxiety Disorder-7 ≥ 5). Caregivers self-reported their anxiety symptoms (Hospital Anxiety and Depression Scale-Anxiety), depression symptoms (Hospital Anxiety and Depression Scale-Depression), coping skills (Measure of Current Status), and caregiving self-efficacy (Lewis Cancer Self-Efficacy Scale) at baseline and 11 weeks (post-intervention). We ran three causal mediation regression models with bias-corrected bootstrapping to examine whether intervention effects on anxiety symptoms, depression symptoms, and self-efficacy at 11 weeks were mediated by changes in coping ability from baseline to 11-weeks. Results: Improvements in anxiety symptoms at 11 weeks in caregivers assigned to NeuroCARE, compared to those receiving UC, were mediated by increased coping ability across the 11 weeks. Improved coping ability led to a 1.44 decrease in anxiety on the HADS-A for patients assigned to NeuroCARE (indirect effect = -1.44, bootstrapped SE = 0.49, 95% CI [-2.50, -0.54]). This indirect effect accounted for 75% of the total intervention effect on anxiety. Similarly, NeuroCARE-related reductions in 11-week depression symptoms were mediated by improved coping ability (indirect effect = -1.43, bootstrapped SE = 0.38, 95% CI [-2.21, -0.74], 82% of the total effect), as were increases in caregiving self-efficacy (indirect effect = 11.03, bootstrapped SE = 2.59, 95% CI [6.30, 16.53], 63% of the total effect). Conclusions: The beneficial effects of the intervention on caregivers’ anxiety symptoms, depression symptoms, and self-efficacy were driven indirectly by caregivers’ use of evidence-based coping skills learned in NeuroCARE. The identification of coping as an active intervention component is critical for optimizing the scalability and sustainability of NeuroCARE for this highly burdened and distressed PMBT caregiver population. Clinical trial information: NCT04109209 .
Electronic capture of cancer patients' health related social needs in a community oncology network.
Authors: Puneeth Indurlal, Jessica Neeb, Dana Weber, Lydia Mills, Judi Payne-De Bock, Evan Osborne, Erin Crum, Lalan S. Wilfong
Journal: Journal of Clinical Oncology (2024)

12105 Background: Health related social needs (HRSN) are known to have an impact on cancer patient outcomes and experience. Practices in The US Oncology Network (The Network) use the National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) as the screening tool for HRSNs. With the deployment of the NCCN DT in the electronic health record (EHR), we seek to evaluate the distress and HRSNs reported by cancer patients. Methods: Data collected using the EHR-based NCCN DT for seven practices in The Network between July and December 2023 was used to evaluate the positive finding rate, types of distress reported, and plan of action for reported problems. Screenings were conducted at different points in the care continuum depending on practice standards and preferences. Results: Between July and December 2023, a total of 269,666 screenings for 219,720 unique patients were recorded using the EHR-based NCCN DT, of which 3.1% (8,332) were recorded as patient declined. 117,363 (43.5%) screenings had a positive finding (≥1 problem, or score ≥1). Nearly 2 in 5 screenings (103,767, 38.5%) had a problem reported, with 58.2% (60,373) of those screenings reporting a problem in more than 1 problem area. A numeric distress value was recorded in 94.6% (255,046) of the screenings, with 27.2% (73,338) having a distress score of ≥ 1 and 11.6% (31,264) with a score of ≥ 4. Problem list responses are reported in the table. A distress action plan was recorded for 55.7% (65,333) of the positive findings, of which a majority (79.6%) of patients declined any assistance. Most of the action plans for referrals to appropriate assistance services were recorded for screenings with ≥3 problems reported (58.0% vs 24.6%), or with distress scores of ≥4 (65.6% vs 9.9%). Conclusions: HRSN’s are commonplace among cancer patients, and screening aids with identifying and addressing distress. Electronic capture of DT in the EHR helps oncology practices use data to facilitate holistic patient care, design and optimize support services (social work, navigation, symptom management programs), as well as gather and organize community resources to address HRSNs and ultimately identify disparities and work toward advancing health equity. [Table: see text]
Young lung cancer: Psychosocial needs assessment.
Authors: Narjust Florez, Lauren Kiel, Miki Horiguchi, Rebekah Kaufman, Danielle Haradon, Michelle Sanchez, Ruth Lederman, Emma Voligny, Tom Nguyen, Stephanie McDonald, Fatima Wilder, Cristina Pozo-Kaderman, Pasi A. Janne, Bruce E. Johnson, Ann H. Partridge, Andrea Catherine Enzinger
Journal: Journal of Clinical Oncology (2024)

12104 Background: Young patients (≤50 years) with lung cancer (LC) face unique needs, including mental health and financial challenges, which are understudied to date. We report preliminary results of an ongoing cohort, prospective study exploring psychosocial needs in patients with LC, focusing on the experiences of young patients. Methods: Eligible patients (pts) were age ≥18 years old, with LC stages I-IV, receiving care at Dana-Farber Cancer Institute, and enrolled within 1 year of diagnosis. The FACT-G and COST questionnaires assessed psychosocial and financial distress, with higher scores indicating a more favorable well-being. Descriptive statistics summarized demographics, clinical characteristics, and prevalence of psychosocial needs. Results: 139 pts were enrolled from April 2023 - January 2024; 61 young pts were included in this analysis. 69% identified as female, 70% as White, 8% as Black, and 22% as another race (Table). Since LC diagnosis, 22 pts (36%) reported being diagnosed with at least one mental health condition. Of a possible total score of 108, the mean FACT-G score was 71 (SD: 20). Mean scores for physical, social, emotional, and functional subscales were 19, 22, 14, and 16 (out of 28, 28, 24, and 28), indicating significant burden in the emotional and functional domains. A majority reported feeling sad or anxious (53%, 59%), and 57% were worried about premature death. Most pts (62%) reported (somewhat-very much) having a lack of energy and nearly half reported having substantial pain and being bothered from treatment side effects (42%, 47%, respectively). Many pts were able to work and enjoy their usual recreational activities (66%, 72%, respectively). Nearly all reported receiving adequate emotional support from their family (95%) and friends (93%) and feeling comfortable discussing their LC with them (93%). When asked if they were satisfied with their sex life, 64% (35/55) stated that they were. Of a maximum score of 44, the mean COST score was 24 (SD: 12), consistent with high financial toxicity in this population. Notably, 40% of pts reported having no or only a little money to pay for treatments and 42% stated that out-of-pocket medical costs were considerably more than expected. 45% felt financially stressed and 41% were concerned about loss of employment; 47% stated that their LC caused a substantial financial hardship and 57% noted significant worry about future financial issues. Conclusions: Young pts with LC report ample financial toxicity and issues impacting physical, emotional, and functional well-being. Fewer social issues were reported. This study will help elucidate the needs of young pts with LC with the ultimate goal of mitigating the disease’s psychosocial impact. [Table: see text]
Analyses of 1,236 genotyped primary ciliary dyskinesia individuals identify regional clusters of distinct DNA variants and significant genotype-phenotype correlations
Authors: Johanna Raidt, Sarah Riepenhausen, Petra Pennekamp, Heike Olbrich, Israel Amirav, Rodrigo A. Athanazio, Micha Aviram, Juan E. Balinotti, Ophir Bar-On, Sebastian F.N. Bode, Mieke Boon, Melissa Borrelli, Siobhan B. Carr, Suzanne Crowley, Eleonora Dehlink, Sandra Diepenhorst, Peter Durdik, Bernd Dworniczak, Nagehan Emiralioğlu, Ela Erdem, Rossella Fonnesu, Serena Gracci, Jörg Große-Onnebrink, Karolina Gwozdziewicz, Eric G. Haarman, Christine R. Hansen, Claire Hogg, Mathias G. Holgersen, Eitan Kerem, Robert W. Körner, Karsten Kötz, Panayiotis Kouis, Michael R. Loebinger, Natalie Lorent, Jane S. Lucas, Debora Maj, Marcus A. Mall, June K. Marthin, Vendula Martinu, Henryk Mazurek, Hannah M. Mitchison, Tabea Nöthe-Menchen, Ugur Özçelik, Massimo Pifferi, Andrzej Pogorzelski, Felix C. Ringshausen, Jobst F. Roehmel, Sandra Rovira-Amigo, Nisreen Rumman, Anne Schlegtendal, Amelia Shoemark, Synne Sperstad Kennelly, Ben O. Staar, Sivagurunathan Sutharsan, Simon Thomas, Nicola Ullmann, Julian Varghese, Sandra von Hardenberg, Woolf T. Walker, Martin Wetzke, Michal Witt, Panayiotis Yiallouros, Anna Zschocke, Ewa Ziętkiewicz, Kim G. Nielsen, Heymut Omran
Journal: European Respiratory Journal (2024)

Primary ciliary dyskinesia (PCD) represents a group of rare hereditary disorders characterised by deficient ciliary airway clearance that can be associated with laterality defects. We aimed to describe the underlying gene defects, geographical differences in genotypes and their relationship to diagnostic findings and clinical phenotypes.
Longitudinal humoral analysis in RSV-infected infants identifies pre-existing RSV strain-specific G and evolving cross-reactive F antibodies
Authors: Nadège Nziza, Wonyeong Jung, Maanasa Mendu, Tina Chen, Boris Julg, Barney Graham, Octavio Ramilo, Asuncion Mejias, Galit Alter
Journal: Immunity (2024)

Respiratory syncytial virus (RSV) is among the most common causes of lower respiratory tract infection (LRTI) and hospitalization in infants. However, the mechanisms of immune control in infants remain incompletely understood. Antibody profiling against attachment (G) and fusion (F) proteins in children less than 2 years of age, with mild (outpatients) or severe (inpatients) RSV disease, indicated substantial age-dependent differences in RSV-specific immunity. Maternal antibodies were detectable for the first 3 months of life, followed by a long window of immune vulnerability between 3 and 6 months and a rapid evolution of FcγR-recruiting immunity after 6 months of age. Acutely ill hospitalized children exhibited lower G-specific antibodies compared with healthy controls. With disease resolution, RSV-infected infants generated broad functional RSV strain-specific G-responses and evolved cross-reactive F-responses, with minimal maternal imprinting. These data suggest an age-independent RSV G-specific functional humoral correlate of protection, and the evolution of RSV F-specific functional immunity with disease resolution.
Stereotactic Ablative Radiotherapy for Gynecological Oligometastatic and Oligoprogessive Tumors
Authors: Elysia K. Donovan, Simon S. Lo, Sushil Beriwal, Hanbo Chen, Patrick Cheung, Andrew Keller, Chika Nwachukwu, Constantine Mantz, Gregory R. Pond, Kara Schnarr, Anand Swaminath, Kevin Albuquerque, Eric Leung
Journal: JAMA Oncology (2024)

The role of stereotactic ablative radiotherapy (SABR) for gynecologic malignant tumors has yet to be clearly defined despite recent clinical uptake.