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Objective: To develop a symptom-focused index to evaluate representative symptoms, treatment side effects, and emotional and functional well-being of patients with carcinoid syndrome (CS). Methods: The development of the Functional Assessment of Cancer Therapy-Carcinoid Syndrome Symptom Index (FACT-CSI) followed US Food and Drug Administration guidelines for the development of patient-reported outcome (PRO) measures and involved the following: (a) literature review; (b) interviews with 14 CS patients; (c) interviews with 9 clinicians; and (d) instrument development involving input from a range of PRO measure development and CS experts. The resulting draft instrument underwent cognitive interviews with 7 CS patients. Results: Forty-six CS sources were reviewed. Analysis of patient interviews produced 23 patient-reported symptoms. The most frequently endorsed physical symptoms were flushing, diarrhea, abdominal pain, fatigue, and food sensitivity/triggers. Seven priority CS emotional and functional themes were also identified by patients. Expert interviews revealed 12 unique priority symptoms – the most common being diarrhea, flushing, wheezing, edema, abdominal pain/cramping, fatigue, and 8 emotional and functional concerns. Through an iterative process of team and clinical collaborator meetings, data review, item reduction and measure revision, 24 items were selected for the draft symptom index representing symptoms, emotional concerns, global assessment of treatment side effects, and functional well-being. Cognitive interview results demonstrated strong content validity, including positive endorsement of item clarity (>86% across items), symptom relevance (>70% for most items), and overall measure content (86%). Conclusions: The FACT-CSI is a content-relevant, symptom-focused index reflecting the highest priority and clinically relevant symptoms and concerns of people with CS. [ABSTRACT FROM AUTHOR]

Introduction: As the COVID-19 pandemic placed a spotlight on the health inequities in the United States, this study aimed to determine the local programmatic needs of community organizations (CO) delivering COVID-19 interventions across Chicago., Methods: In the summer of 2021, the Chicagoland CEAL Program interviewed 34 COs that were providing education, testing, and/or vaccinations in communities experiencing poor COVID-19 outcomes. The interviews were analyzed thematically and organized around logistical challenges and funding/resource needs., Results: The COs routinely offered testing (50%) or vaccinations (74%), with most (56%) employing some programmatic evaluation. Programs utilizing trusted-messenger systems were deemed most effective, but resource-intensive. CO specific needs clustered around sustaining effective outreach strategies, better CO coordination, wanting comprehensive trainings, improving program evaluation, and promoting services and programs., Conclusion: The COs reached populations with low-vaccine confidence using trusted messengers to overcome mistrust. However, replenishment of the resources needed to sustain such strategies should be prioritized. Leveraging the Chicagoland CEAL Program to help negotiate community organizations' interorganizational coordination, create training programs, and provide evaluation expertise are deliverable supports that may bolster COVID-19 prevention., Policy Implications: Achieving health justice requires that all institutions of power participate in meaningful community engagement, help build community capacity, and infuse health equity throughout all aspects of the research and program evaluation processes., Competing Interests: AMM, SL, LL, and PT were employed by Equal Hope. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Moskowitz, Silva, Castañeda, Battalio, Hartstein, Murphy, Ndebele, Switalski, Lomahan, Lacson, Plum, Canty, Sandoval, Thomas, De Pablo, Spring and Martin.)