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Item A Clinical Severity Index for Eosinophilic Esophagitis: Development, Consensus, and Future Directions(Elsevier, 2022) Dellon, Evan S.; Khoury, Paneez; Muir, Amanda B.; Liacouras, Chris A.; Safroneeva, Ekaterina; Atkins, Dan; Collins, Margaret H.; Gonsalves, Nirmala; Falk, Gary W.; Spergel, Jonathan M.; Hirano, Ikuo; Chehade, Mirna; Schoepfer, Alain M.; Menard-Katcher, Calies; Katzka, David A.; Bonis, Peter A.; Bredenoord, Albert J.; Geng, Bob; Jensen, Elizabeth T.; Pesek, Robert D.; Feuerstadt, Paul; Gupta, Sandeep K.; Lucendo, Alfredo J.; Genta, Robert M.; Hiremath, Girish; McGowan, Emily C.; Moawad, Fouad J.; Peterson, Kathryn A.; Rothenberg, Marc E.; Straumann, Alex; Furuta, Glenn T.; Aceves, Seema S.; Pediatrics, School of MedicineBackground & aims: Disease activity and severity of eosinophilic esophagitis (EoE) dictate therapeutic options and management, but the decision-making process for determining severity varies among practitioners. To reduce variability in practice patterns and help clinicians monitor the clinical course of the disease in an office setting, we aimed to create an international consensus severity scoring index for EoE. Methods: A multidisciplinary international group of adult and pediatric EoE researchers and clinicians, as well as non-EoE allergy immunology and gastroenterology experts, formed 3 teams to review the existing literature on histology, endoscopy, and symptoms of EoE in the context of progression and severity. A steering committee convened a 1-day virtual meeting to reach consensus on each team's opinion on salient features of severity across key clinicopathologic domains and distill features that would allow providers to categorize disease severity. Results: Symptom features and complications and inflammatory and fibrostenotic features on both endoscopic and histologic examination were collated into a simplified scoring system-the Index of Severity for Eosinophilic Esophagitis (I-SEE)-that can be completed at routine clinic visits to assess disease severity using a point scale of 0-6 for mild, 7-14 for moderate, and ≥15 for severe EoE. Conclusions: A multidisciplinary team of experts iteratively created a clinically usable EoE severity scoring system denominated "I-SEE" to guide practitioners in EoE management by standardizing disease components reflecting disease severity beyond eosinophil counts. I-SEE should be validated and refined using data from future clinical trials and routine clinical practice to increase its utilization and functionality.Item A Cross-Sectional Analysis of Testicular Cancer Symptom Recognition and Stage of Diagnosis(Sage, 2022) Rovito, Michael J.; Craycraft, Mike; Adams, Wesley B.; Maresca, Michael; Saab, Mohamad M.; Cary, Clint; Gooljar, Chayna; Martinez, Sydney; Zanet, Rama Abu; Urology, School of MedicineThere is a need to further explore the relationship between atypical symptom reporting and stage diagnosis to help develop a clearer defined list of possible testicular cancer (TC) symptoms that could assist physicians diagnose the disease earlier. A cross-sectional study was employed to explore possible associations between TC symptom presentation and stage of diagnosis. An original 40-item survey was distributed among 698 TC survivors to determine the potential impact of several risk factors, experiences, and behaviors upon diagnosis. This analysis aimed to explore how certain patient-driven experiences (e.g., symptoms, perceptions, and behaviors) could serve as catalysts for seeking medical care for testicular health concerns. Experiencing hot flashes or having no symptoms had a positive association with later-stage diagnosis while change in shape had a significant negative association with later-stage diagnosis. While the logistic regression model explained relatively low variance in the data (R2 = .1415), it was statistically significant (χ2p < .001). Pain (odds ratio [OR] = 1.6524, p < .05), hot flashes (OR = 5.7893, p < .01), and no symptoms experienced (OR = 12.4836, p < .01) were all significant predictors of a more advanced stage diagnosis. The concern around uncommon/atypical symptoms are that they are indistinct and do not serve as clear signs that TC is present. However, perhaps in tandem with other more overt symptoms, their discovery can serve in a more confirmatory role for a suspect case. If observed with other uncommonly reported symptoms, these uncommon symptoms could provide another pathway in the TC diagnostic process. Clinical and patient education is warranted to increase awareness of uncommon TC symptoms.Item A qualitative study of pain and related symptoms experienced by people with Ehlers-Danlos syndromes(Frontiers Media, 2024-01-03) Schubart, Jane R.; Mills, Susan E.; Francomano, Clair A.; Stuckey-Peyrot, Heather; Medical and Molecular Genetics, School of MedicineIntroduction: Individuals with Ehlers-Danlos syndromes (EDS) often have complex and multi-faceted symptoms across the lifespan. Pain and the related symptoms of fatigue and sleep disorders are common. The objective of this qualitative study was to understand how participants manage their pain and related symptoms. Methods: The design was a qualitative thematic content analysis. Twenty-eight interviews were conducted to collect data from individuals who were participants in a prior quantitative longitudinal study. A semi-structured interview guide was designed to focus on and understand the trajectory of pain, sleep, fatigue, and general function. The interview continued with questions about coping mechanisms and obstacles to maintaining a sense of well-being. Results: Symptoms reported by participants were widespread and often interwoven. Pain was universal and often resulted in fatigue and disordered sleep which impacted physical function. Most participants reported that their symptoms worsened over time. Participants reported a wide range of effective interventions and most reported developing self-care strategies to adapt to their disabilities/limitations. Solutions included complementary interventions discovered when conventional medicine was unsuccessful. Very few relied on a "system" of health care and instead developed their own strategies to adapt to their disabilities/limitations. Discussion: EDS symptoms are often debilitating, and their progression is unknown. For most participants, symptoms worsened over the time. Even though participants in our study, by experience, were self-reliant, the importance of knowledgeable medical providers to help guide self-care should be emphasized.Item Agreement between older adult patient and caregiver proxy symptom reports(Springer, 2022-05-14) Kroenke, Kurt; Stump, Timothy E.; Monahan, Patrick O.; Medicine, School of MedicineBackground: Proxy report is essential for patients unable to complete patient-reported outcome (PRO) measures themselves and potentially beneficial when the caregiver perspective can complement patient report. In this study, we examine agreement between self-report by older adults and proxy report by their caregivers when completing PROs for pain, anxiety, depression, and other symptoms/impairments. Methods: Four PROs were administered by telephone to older adults and their caregivers followed by re-administration within 24 h in a random subgroup. The PROs included the PHQ-9 depression, GAD-7 anxiety, PEG pain, and SymTrak multi-dimensional symptom and functional status scales. Results: The sample consisted of 576 older adult and caregiver participants (188 patient-caregiver dyads, 200 patients without identified caregiver). The four measures had good internal (Cronbach's alpha, 0.76 to 0.92) and test-retest (ICC, 0.63 to 0.92) reliability whether completed by patients or caregivers. Total score and item-level means were relatively similar for both patient and caregiver reports. Agreement for total score as measured by intraclass correlation coefficient (ICC) was better for SymTrak-23 (0.48) and pain (0.58) than for anxiety (0.28) and depression (0.25). Multinomial modeling showed higher (worse) patient-reported scale scores were associated with caregiver underreporting, whereas higher caregiver task difficulty was associated with overreporting. Conclusion: When averaged over individuals at the group level, proxy reports of PRO scores by caregivers tend to approximate patient reports. For individual patients, proxy report should be interpreted more cautiously for psychological symptoms as well as when patient-reported symptoms are more severe, or caregiver task difficulty is high.Item Association between Cardiovascular Disease and Cognitive Dysfunction in Breast Cancer Survivors(Wolters Kluwer, 2023) Von Ah, Diane; Crouch, Adele; Arthur, Elizabeth; Yang, Yesol; Nolan, Timiya; School of NursingBackground: Breast cancer survivors (BCS) may have a greater risk for cardiovascular disease [congestive heart failure (CHF) and hypertension (HTN)], which in turn, can affect cognitive dysfunction, a frequent, bothersome, and potentially debilitating symptom. Objective: The purpose of this study was to examine the relationship of cardiovascular disease on cognitive function in BCS. Methods: Baseline data from a double-blind RCT for cognitive training of BCS were examined. Early stage BCS (Stage I-IIIA) who were ≥21 years of age, completed adjuvant therapy (≥ 6 months), and reported cognitive concerns completed questionnaires and a brief neuropsychological assessment, including tests of memory, attention and working memory, speed of processing, and verbal fluency. Descriptive statistics, Pearson’s correlation coefficient and separate linear regression models for each cognitive domain were conducted. Results: 47 BCS, who were on average 57.3 (SD=8.1) years old, 58% White and had some college education (75%), completed the study. 44.7% of the BCS had cardiovascular disease (CHF or HTN). In linear regression models, cardiovascular disease was significantly related to immediate and delayed memory and attention and working memory (p<0.01–0.05). Conclusions: BCS who have cardiovascular disease may also be at a greater risk for cognitive dysfunction post-treatment. Results from this study inform both clinical practice and future research, specifically by examining the intersect between cancer, cardiovascular disease (cardiotoxicity), and cognition. Implications for Practice: Nurses should be aware that BCS with co-occurring cardiovascular disease are at higher risk for cognitive dysfunction, and work within the multidisciplinary team to optimize BCS health and function.Item Cancer-related loneliness mediates the relationships between social constraints and symptoms among cancer patients(Springer Nature, 2018-04) Adams, Rebecca N.; Mosher, Catherine E.; Winger, Joseph G.; Abonour, Rafat; Kroenke, Kurt; Psychology, School of ScienceCancer patients have high rates of persistent and disabling symptoms. Evidence suggests that social constraints (e.g., avoidance and criticism) negatively impact symptoms, but pathways linking these variables have yet to be identified. This study examined whether cancer-related loneliness (i.e., feeling socially disconnected related to having cancer) mediated the relationships between social constraints and symptoms (i.e., pain interference, fatigue, sleep disturbance, and cognitive complaints) in patients with various cancers (N = 182). Patients (51% female, mean age = 59) were recruited from the Indiana Cancer Registry and completed questionnaires assessing social constraints, cancer-related loneliness, and symptoms. Structural equation modeling was used to evaluate the hypothesized relationships among variables. The model demonstrated good fit. Consistent with our hypothesis, cancer-related loneliness mediated the relationships between social constraints and each symptom. Findings suggest that addressing cancer-related loneliness in symptom management interventions may mitigate the negative impact of social constraints on outcomes.Item Changes in symptom scores as a potential clinical endpoint for studies of cystic fibrosis pulmonary exacerbation treatment(Elsevier, 2021) VanDevanter, D.R.; Heltshe, S.L.; Sanders, D.B.; West, N.E.; Skalland, M.; Flume, P.A.; Goss, C.H.; Pediatrics, School of MedicineIntroduction: Symptom improvement was assessed as changes in the Chronic Respiratory Infection Symptom Score (CRISS) during intravenous antimicrobial exacerbation treatments among subjects from study NCT02109822. Methods: Median daily CRISS reduction (i.e., improvement) and covariates associated with CRISS reduction by Day 14 were assessed by logistic regression. Results: Among 173 subjects, median baseline CRISS was 49 [IQR 41, 56]; 93.6% had a CRISS reduction of ≥11 (minimal clinically important difference); median time to -11 reduction was 2 days [95% CI 2, 3]. The greatest median CRISS difference from baseline, on Day 17, was -26 [-29, -23]. Odds of -26 CRISS change by Day 14 were greater in subjects with higher baseline CRISS (P=.006) and younger ages (P=.041). Conclusions: CRISS response has good dynamic range and may be a useful efficacy endpoint for PEx interventional trials. The optimal use of CRISS change as an endpoint remains uncharacterized.Item Clinical Characteristics of Non-Intensive Care Unit COVID-19 Patients in Saudi Arabia: A Descriptive Cross-sectional Study(Elsevier, 2020-11-13) Al-Omari, Awad; Alhuqbani, Waad N.; Zaidi, Abdul Rehman Z.; Al-Subaie, Maha F.; AlHindi, Alanoud M.; Abogosh, Ahmed K.; Alrasheed, Aljwhara K.; Alsharafi, Aya A.; Alhuqbani, Mohammed N.; Salih, Samer; Alhedaithy, Mogbil Abdullah; Abdulqawi, Rayid; Ismail, Alaa Fariz; Alhumaid, Saad; Hamdan, Noura; Saad, Fares; Olhaye, Fahad Abdullah; Eltahir, Tarig Ali; Alomari, Mohammed; Alshehery, Maied; Yassiri, Aziz; Al-Tawfiq, Jaffar A.; Al Mutair, Abbas; Medicine, School of MedicineIntroduction: The ongoing pandemic of the coronavirus disease 2019 (COVID-19) is a global health concern. It has affected more than 5 million patients worldwide and resulted in an alarming number of deaths globally. While clinical characteristics have been reported elsewhere, data from our region is scarce. We investigated the clinical characteristics of mild to moderate cases of COVID-19 in Saudi Arabia. Methods: This is a descriptive, cross-sectional study. Data of 401 confirmed COVID-19 patients were collected from 22 April 2020 to 21 May 2020 at five tertiary care hospitals in Riyadh, Saudi Arabia. The patients were divided into four groups according to age, Group 1: 0-<18 years, Group 2: 18-<50 years, Group 3: 50-60 years, and Group 4: >60 years; and their clinical symptoms were compared. Results: The median (IQR) age in years was 10.5 (1.5-16) in group I, 34 (29-41) in group II, 53 (51-56) in group III, and 66 (61-76) in group IV. Most patients were male (80%, n = 322) and of Arabian or Asian descent. The median length of stay in the hospital was 10 (8-17) days (range 3-42 days). The most common symptoms were cough (53.6%), fever (36.2%), fatigue (26.4%), dyspnea (21.9%), and sore throat (21.9%). Hypertension was the most common underlying comorbidity (14.7%), followed by obesity (11.5%), and diabetes (10%). Hypertensive patients were less likely to present with shortness of breath, cough, sputum, diarrhea, and fever. Conclusion: There was no significant difference in the symptoms among different age groups and comorbidities were mostly seen in the older age group. Interestingly, hypertensive patients were found to have milder symptoms and a shorter length of stay. Further larger collaborative national studies are required to effectively understand clinical characteristics in our part of the world to efficiently manage and control the spread of SARS-CoV-2.Item Comorbidity, Physical Function, and Quality of Life in Older Adults with Acute Myeloid Leukemia(Springer, 2017-12) Storey, Susan; Gray, Tamryn Fowler; Bryant, Ashley Leak; School of NursingPurpose of review: To describe the pathology, impact of comorbidities, functional limitations, symptoms, and quality of life (QOL) related to treatment of acute myeloid leukemia (AML) in older adults. Recent findings: AML is a rare aggressive hematologic disease that occurs most often in older adults. The prognosis for older patients with AML is markedly worse due to genetic mutations and patient characteristics such as comorbidities and functional limitations. Patient characteristics may influence treatment decisions, as well as impact symptoms, functional ability, health-related outcomes and (QOL). Summary: As the population continues to age, the number of people diagnosed with AML is expected to increase. Better management of comorbidities is imperative to improving QOL and other treatment related outcomes. Prospective, longitudinal and multi-site studies are warranted to further understand the interaction between these characteristics on symptoms, outcomes and QOL.Item COVID-19: How Do We Stay Safe?(American Thoracic Society, 2020-07-10) Carlos, W. Graham; Dela Cruz, Charles S.; Cao, Bin; Gross, Jane E.; Pasnick, Susan; Jamil, Shazia; Medicine, School of Medicine