tbuckley/cabot-search huggingface dataset:
Patient (pt) interview–based content validation of the Myelofibrosis Symptom Assessment Form version 4.0 (MFSAF v4.0).
Authors: Anna Cardellino, Shiyuan Zhang, Kelesitse Phiri, Heather Gelhorn, Katelyn Cutts
Journal: Journal of Clinical Oncology (2024)

e23106 Background: Pts with myelofibrosis (MF) often experience debilitating symptoms that negatively impact health-related quality of life and functioning. The MFSAF v4.0 is a 7-item questionnaire assessing the burden of MF symptoms, including fatigue, night sweats, pruritus, abdominal discomfort, pain under left ribs, early satiety, and bone pain. Each item is evaluated on an 11-point numeric rating scale (NRS) from 0 (absent) to 10 (worst imaginable). We sought to evaluate the content validity of the MFSAF v4.0 in Janus kinase inhibitor–experienced pts with MF. Methods: Qualitative interviews were conducted remotely by trained interviewers with 20 Janus kinase inhibitor–experienced and symptomatic (MFSAF Total Symptom Score [TSS] ≥10) pts with MF from the US (n = 5) and UK, Germany, Italy, Poland, and Spain (n = 3 each). The interview began with a concept elicitation section to allow spontaneous reporting of important concepts prior to content validation of the MFSAF v4.0 items and NRS as relevant, important, and understandable to pts. Results: Mean pt age was 59.4 years; 50% were male, 55% were diagnosed within the past year, 95% were on any treatment for MF, and 75% were anemic. On average, pts had 2.1 transfusions within the past 3 mo. Mean MFSAF v4.0 TSS was 28.6.The top spontaneously endorsed symptoms were tired (70%), bone/muscle pain (70%), fatigue (55%), night sweats (45%), and pruritis (45%), many of which are also items in the MFSAF v4.0. An additional 18 symptoms were spontaneously mentioned by pts prior to completion of the MFSAF v4.0. Many of these other symptoms were endorsed by ≤10% of pts (1 or 2 pts each), and 90% of pts felt that the measure represented their experience and did not recommend inclusion of additional symptoms after reviewing the measure. Overall, pts showed a clear understanding of the MFSAF v4.0 (Table). No more than 3 pts (15%) mentioned that a given item was not relevant to their individual experience. Pts consistently felt that it was easy to select an answer on the response scale and were able to differentiate response options. When describing meaningful change in terms of NRS, pts most often suggested that an improvement of 2 to 4 points would be meaningful. Conclusions: Based on the findings from this study, the MFSAF v4.0 is a content-valid measure for pts with MF and captures the most important concepts. All items are comprehensible and relevant, with the NRS endorsed as an appropriate response scale. [Table: see text]
Epidemiological analysis and overall survival of adrenal malignancies in a developing Middle Eastern country over 18 years.
Authors: Ahmed A Abdulelah, Zaid A. Abdulelah, Abdulrahman Ahmad Alhajahjeh, Aseel Saadeh, Mohammad Al-Dqour, Hikmat Abdel-Razeq
Journal: Journal of Clinical Oncology (2024)

e23067 Background: Adrenal cancer imposes a significant socioeconomic and health burden due to the resulting morbidity and mortality. Accordingly, assessment of the epidemiological characteristics of adrenal malignancies in the Middle East, where the epidemiology of adrenal malignancies is poorly evaluated, is of paramount importance in management tailoring and planning as it enables appropriate risk stratification, especially in limited resource countries. Methods: Extensive and thorough data on adrenal cancer for all individuals, both males and females, of various nationalities residing in Jordan who were diagnosed from 2000-2018 was retrieved from the Jordan Cancer Registry, the formal reporting institution for cancer epidemiology in Jordan with a total of 296 patients being included. Furthermore, comprehensive epidemiological analysis was performed with Kaplan-Meier analysis being performed to assess overall survival rates. Results: 296 patients with a mean age of 18.7 ± 22.6 years old and a male predominance of 55.4% were included in the analysis. The vast majority of the included patients were non-smokers (72.3%). Adrenal malignancy was found to be most commonly located in the left adrenal gland (41.6%), while only 7 patients (2.36%) had bilateral adrenal malignancies. 19.6% of the tumors were arising from the adrenal cortex while 70.9% of the patients had adrenal gland tumors with the origin being unknown at the time of reporting. A concerning 17.20% of the enrolled patients had poorly differentiated tumors, and 8 patients (2.70%) had undifferentiated malignancies. At the time of diagnosis, a staggering 51.0% of the patients had distant and systemic metastasis, while only 11.8% of the patients had localized malignancy. The overall 5-year survival rate was determined to be 66.8%. A statistically significant increase in the crude incidence of adrenal cancer in Jordan over 18 years was evident with a crude incidence estimated effect of 0.014 (p-value = 0.003). Conclusions: Despite that the 5-year survival is 66.8%, there is an alarmingly significant uptrend in the crude incidence of adrenal cancer in Jordan with the overwhelming majority presenting at an advanced stage, and thus the introduction of early interventions and advanced management is mandated to achieve better outcomes.
Access to cancer center information for patients with limited English proficiency from NCI Cancer Center websites.
Authors: Jeffrey William Fuchs, Joseph Robert Fuchs, Jonathan S Theros, Yingzhe Liu, Zequn Sun, Nisha Anjali Mohindra
Journal: Journal of Clinical Oncology (2024)

e23124 Background: Patients with Limited English Proficiency (LEP) can experience health disparities in cancer care and clinical trial participation. This study sought to assess the availability of information on interpreter services, clinical trials, and second opinions from National Cancer Institute – Designated Cancer Center (NCI-DCC) websites for patients with LEP. Methods: The public facing websites of all 65 adult NCI-DCCs were reviewed from January 1, 2023 to May 15, 2023 to assess availability of English and translated, non-English information on interpreter services, second opinion programs, and clinical trials. Data abstraction was conducted through predefined criteria for website inspection and search bars. Three authors independently abstracted websites for content, with constant comparison until consensus was achieved. Chi-square tests were used to ascertain any significant association between the proportion of LEP populations served by the centers ( &gt; 5%) and their likelihood to provide translated information. Results: 92.3% of NCI-DCCs and their affiliated flagships hospitals provide information on interpreter services for patients with LEP. This information was translated into a non-English language approximately half of the time. All NCI-DCC center webpages provide information on clinical trials and 38.5% provide information regarding second opinions. There was no difference in the availability of translated information on interpreter services or second opinion programs based on percentage of LEP population. However, there was an association between higher LEP population and the provision of translated clinical trial pages. Conclusions: The majority of NCI-DCCs provide information on their webpages related to interpreter services and clinical trials. Half of these centers provide this information in a non-English language and there was an association between higher percentage of LEP populations in the NCI-DCC state and translated clinical trial pages. Future work should identify optimal methods to provide cancer related information to patients with LEP with the goal of improving clinical trial participation for LEP populations. [Table: see text]
Implementation of patient navigation services to improve colorectal cancer health literacy in a vulnerable community health center population.
Authors: Kari Brown, Maria Hartley, Shriya Doreswamy, Sakshi Mishra, Akshay Ratnani, Matthew Behme
Journal: Journal of Clinical Oncology (2024)

e23208 Background: Under-served community populations face social and health inequities which contribute to sub-optimal colorectal cancer (CRC) screening rates and excess mortality risk. Furthermore, these populations may not have the health literacy or food security necessary to mitigate the well-established nutrition-related risk of CRC. This quality improvement study aimed to improve CRC-related health literacy and dietary habits, with the additional goal of improving screening rates in our disadvantaged community health center population. Methods: This single-institutional study utilized the Plan-Do-Study-Act (PDSA) model to implement patient navigation services and administer a cross-sectional survey evaluating nutrition-related CRC risk. Patients eligible for screening were contacted by patient outreach coordinators prior to scheduled primary care appointments, and the survey was administered. During patient visits, outreach coordinators met with them to provide 1:1 education addressing CRC prevention, screening and nutrition. Information on free or low-cost fresh food options was provided to help address barriers such as food insecurity. The outreach coordinators also liaised with physicians to assist with coordination to services. Results: Prior to the intervention 58% of survey respondents (25/43) were not aware of any foods or dietary habits that decreased the risk of colorectal cancer; 51% (22/43) were not aware of foods that increased the risk of colorectal cancer. Most respondents (54%) were in fact not at all worried about possibly developing CRC in their lifetimes (22/41), while 34% (14/41) were a little worried, and the remainder (12%) very or extremely worried. 97% of respondents (33/34) felt more knowledgeable about CRC screening and felt more confident about improving their nutrition to reduce CRC risk after receiving the educational intervention, while 94% of respondents (31/33) stated they would subsequently make dietary changes. Conclusions: Health literacy regarding colorectal cancer was low in this underserved community population. Implementation of a patient navigation intervention led to increased knowledge and confidence in modifying dietary risk factors. However, preliminary data review did not reveal significant change in CRC screening rates during the initial phase of the intervention. One of the initially identified barriers included system-level delays in colonoscopy access. During the Act phase of the PDSA model, patient navigation services will be further optimized by workflow adaptation based on the response of outreach coordinators and patient-reported barriers regarding stool-based testing. [Table: see text]
An application (ePRO) -based patient reported outcomes of quality of life from an innovative cancer care delivery model.
Authors: Dinesh Pendharkar, Chandramauli Tripathi, Ajay Parmar, Mohammad Imam Ather, Ashok Kumar Nagar, Abhishek Raj, Vishnu Hari
Journal: Journal of Clinical Oncology (2024)

e23176 Background: With the accessibility of smartphones, it has become possible to develop applications for patient-reported outcomes. Quality of life (QoL) is an important measure in oncology research. We developed a phone application that could use any standardized form to be filled in by the patient. Here, we report using the EORTC questionnaire, QLQ-C30, built into the application as a form for data collection from our ongoing district cancer care program, which offers support at government district hospitals in India using an alternate oncology work force. Methods: An application (ePRO) was created, which allows one doctor administrator to follow the patients. Once the application is downloaded, the patient opens the QoL questionnaire (QLQ-C30), built into the application, and completes it using a smartphone. The researcher downloaded the data in Excel format and analyzed it. The application was attempted at a tertiary cancer center and a public hospital district cancer unit. A cross-sectional study was conducted over six months in 2023.The data were analyzed using SPSS version 24. Results: The application was downloaded and activated on the smartphones of 441 patients. Patients completed the form available through the application. Of all the respondents, 229 (51.9%) were male and 212 (48.1%) were female. The mean QoL of the tertiary hospital was 69.29, with a standard deviation (SD) of 18.98.The QoL scores were 50.94 (SD 23.50) in district hospital 1 and 77.01 (SD 17.35) in district hospital 2. The difference between one district and the other was significant (p &lt; 0.001). The symptom scale scores varied between district hospitals and other hospitals. Conclusions: This presentation serves two purposes: to validate a new patient-reported outcome application and to provide data on QoL from peripheral centers compared with tertiary centers. The use of technology is feasible and can help gather patient-reported outcomes easily. There appears to be a difference in the quality of life of patients from different geographical locations. [Table: see text]
Investigations of the quality of fertility preservation education provided to patients with cancer at a large community hospital.
Authors: Chelsey ShengQi Zhao, Melissa Fenech, Maegan Miklas, Isidora Ntienjem-Sherwood, Caroline M. Hamm
Journal: Journal of Clinical Oncology (2024)

e23087 Background: Infertility is a challenge many young cancer patients face as a consequence of aggressive treatments. Moreover, many eligible patients do not receive discussion about their fertility, and even fewer obtain referrals to fertility specialists. The goal of the investigation was to examine the frequency and quality of fertility preservation education provided to eligible patients at the Windsor Regional Cancer Program (WRCP). Methods: The first part of the investigation involved a retrospective chart review which identified 203 patients that presented to the WRCP between January 15, 2018 to January 15, 2020 under the age of 40. Amongst these patients, we identified 54 patients that were eligible for fertility preservation. These 54 patients were contacted to participate in the survey and we received 11 responses. The survey data collected include demographics and experience with fertility preservation. The data were analyzed using University of Windsor RedCap. Windsor Regional Hospital REB approval number: 22-426. Results: The retrospective chart review revealed that 34% of the 54 eligible patients did not receive documented fertility preservation counseling. Amongst the survey respondents that had fertility preservation discussions, 86% (6 patients) cited that it was initiated by a healthcare provider. In addition, we found that only 27% (3 patients) of survey respondents were interested in pursuing fertility preservation. The reasoning cited most often included not wanting children, already had children, and barriers such as finances, time and effort to pursue fertility preservation and fear of delaying fertility preservation. Moreover, the 3 survey respondents successfully pursued fertility preservation in the form of sperm collection (2 patients) and freezing eggs/embryos (1 patient). Conclusions: We identified the need to improve standardization of fertility preservation education in eligible patients. Moreover, we found that few patients desired fertility preservation. Although this is a small number of patients, providing appropriate fertility education is essential in cancer survivorship. Our next steps include piloting and implementing an improved fertility education program.
Financial toxicity screening preferences in patients with breast cancer.
Authors: Laila A. Gharzai, Yingzhe Liu, Zequn Sun, Leila Mady, Michelle Mohn, Alexis Larson, Sheetal Mehta Kircher, Betina Yanez, Reshma Jagsi, Ruth C. Carlos, Gelareh Sadigh
Journal: Journal of Clinical Oncology (2024)

e23132 Background: Financial toxicity is an important issue for cancer patients that affects quality of life and treatment adherence. Screening can help identify patients at risk but consensus on appropriate timing or methods for screening is lacking. We conducted a survey to assess preferences for financial toxicity screening among a cohort of cancer patients. Methods: An anonymous cross-sectional survey was sent to email newsletter subscribers of a breast cancer-specific philanthropic organization with a nationwide reach in July 2023. Participants were asked about financial toxicity screening preferences; all questions were optional. Frequencies, percentages, means, and standard deviations were calculated for categorical and continuous variables, respectively. Comparative analyses, including chi-square and t-tests, were used to identify differences across demographic groups. Statistical significance was determined at p &lt; 0.05. Results: Of 5774 potential participants who clicked on the email link, 825 respondents with confirmed prior or current cancer diagnosis participated in the survey (14.3% response rate). These participants were 84% female (n = 690) with a median age of 50 years (IQR 44-57), were 51% non-Hispanic White (n = 418), 18% Black or African-American (n = 149), 8.2% Hispanic (n = 68). 84% confirmed a breast cancer (n = 689), and 53% were currently undergoing treatment (n = 441). Most participants were not asked about financial stressors by their care team (52%, n = 429) and most did not receive assistance from their care team (61%, n = 501). Most preferred for their providers to reach out to them regarding financial needs (75%, n = 615). Most wished for these discussions to take place early on in their treatment course (when first diagnosed [40%, n = 334] or when treatment course was selected [33%, n = 275]), and for these questions to be asked frequently (each appointment [38%, n = 312] or once per month [32%, n = 268]). Participants felt most comfortable discussing financial needs with a social worker or patient/financial navigator (82%, n = 679). Most wished to discuss financial concerns in person (67%, n = 553) or via telephone (58%, n = 479). Conclusions: Patients with cancer desire financial screening to occur early, often, and to be initiated by their providers. Patient preferences can guide optimal implementation of financial toxicity screening practices. Continued work refining best practices for financial toxicity screening should incorporate these patient preferences.
Cancer statistics: The United States vs. worldwide.
Authors: Krishna Desai, Bohdan Baralo, Ajinkya Kulkarni, Vinay E. Keshava, Sabah Iqbal, Hassan Ali, Sivaguha Yadunath Prabhakaran, Rajesh Thirumaran
Journal: Journal of Clinical Oncology (2024)

e23276 Background: Cancer is now a pandemic worldwide. Although the mortality from cancer is downtrending due to the advent of newer treatment modalities, the global burden of cancer is exponentially increasing due to early detection.Understanding the current cancer demographics can aid in developing strategies to curb the morbidity and mortality from these malignancies. Methods: The data was obtained using 2 databases: GLOBOCAN for global trends, &amp; Surveillance, Epidemiology and End Result database Research Plus Data, 17 Registries, Nov 2022 Sub (2000-2020) for the data in the United States (US). We further stratified SEER data based on incidence, gender &amp; median months of survival (mOS), using the Log-rank test (GraphPad Prism). Results: As per the latest GLOBOCAN analysis, 18,094,716 new cancers (51.63% males,48.36% females) &amp; 9,894,402 deaths (55.49% males, 44.51% females) from cancer occurred, worldwide. The 5 most commonly diagnosed cancers globally were, breast (12.5%), lung (12.2%), colorectal cancer (CRC) (10.7%), prostate (7.8%), &amp; stomach (6%). However, the 5 most common cancers causing mortality globally, were lung (18.2%), CRC (9.5%), liver (8.4%) stomach (7.8%), &amp; breast (6.9%). Whereas, in the US, 2,281,658 new cancers (males 53.75%, females 46.24%) were detected in 2020, &amp; 612,390 deaths (males 52.58%, females 47.41%) occurred from it. The 5 most commonly diagnosed cancers were breast (11.1%), lung (10%), prostate (9.2%), CRC (6.8%), &amp; melanoma (4.2%). Cancer-related mortality was attributed to lung (22.6%), CRC (8.9%), pancreas (7.8%), breast (7%), &amp; prostate (5.3%). SEER data analysis for cancer mortality in the US is listed below in Table 1. Conclusions: Analysis of 2 large databases show that the most common cancers around the world, including the US, are breast, lung, colon &amp; prostate cancers. Breast cancer has the highest incidence, but lung cancer has the highest mortality worldwide. In the US, Whites are more affected &amp; except breast cancer, males have a greater predeliction for the common cancers. mOS was greater for females over all. This study emphasizes the need for further analysis to introspect if modalities such as next generation sequencing-directed immunotherapy would prove beneficial in increasing overall survival. [Table: see text]
Patient-reported and clinical outcomes among patients with pancreatic cancer.
Authors: Rayli Pichardo, Brigid Jacob, Maria Jamil, Dawood Jamil, Shahm Raslan, Courtney M. Rose, Eric Adjei Boakye, Laila Poisson, Samantha Tam, Philip A. Philip
Journal: Journal of Clinical Oncology (2024)

e23200 Background: Pancreatic cancer is associated with poor survival, high symptom burden, and psychological distress. Conventional assessments such as performance status (PS) have relied on provider-generated data to evaluate the selection of treatment and prognosis. Patient-reported outcome measures (PROMs) represent a patient-centric representation of the patient experience and are increasingly applied as tools to help improve outcomes and quality of life. However, little is known about the correlation of PROMs with ECOG PS and clinical outcomes in pancreatic cancer. Methods: We performed a retrospective analysis of patients with pancreatic cancer seen at the Henry Ford Health System between 09/2020 and7/2023, using ICD codes. The NIH’s validated and standardized Patient-Reported Outcomes Measurement Information System was used to capture 4 core domains: fatigue, pain interference, physical function, and depression. Patient-level variables and disease-specific variables were obtained by chart review from EHR. Kruskal-Wallis tests for continuous variables and or Fisher’s exact tests for categorial variables were used to compare the different ECOG scores and PROM scores and patient-level and disease-specific variables. Results: 176 patients were analyzed, with a median age of 65, 58% were male. Most patients had Stage 1 32.9% followed by Stage 4 25.9%, stage 3 22.9%, 1 32.9%. The majority had an ECOG score of 1, followed by, 0, 2, and only 10 had an ECOG PS of 3. There was no statistically significant difference in PS scores according to smoking status, race, or AJCC Stage but differed by age (P = 0.0007). PS score was not significantly associated with PROMscores on depression, fatigue, or pain interference. However, increasing PS scores were associated with a significant increase in low physical function PROM scores (P &lt; 0.0001). Conclusions: Clinician-assessed PS is a single assessment of the patient’s tolerance to therapies subject to physician bias; our study provides encouraging data on the association between PS and patients’ reported physical function. The other PROM domains did not provide additional meaningful information on the patient’s function although are part of clinical decision-making. [Table: see text]