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Item A pilot survey of breast cancer survivors' reporting of palpitations to healthcare providers(Sage, 2024) Carpenter, Janet S.; Sheng, Ying; Snyder, Morgan; Fagan, Rileigh; Ekanayake, Vindhya; Elkins, Gary R.; School of NursingBackground: Breast cancer survivors (BCS) may experience cardiotoxicities from chemotherapy and oral endocrine therapy. Although a few studies have documented that palpitations are prevalent and associated with poorer outcomes, there is limited to no information on BCS' reporting of palpitations to healthcare providers. Objectives: To compare BCS who did and did not report their palpitations to a healthcare provider and describe how those who did report palpitations recalled their provider responding. Design: This was a cross-sectional, national, electronic, pilot survey of BCS enrolled in the Love Army of Women registry. Methods: Participants (n = 52 with palpitations) completed standardized and investigator-designed questionnaires. Data were analyzed using frequency and descriptive statistics, chi-square tests, and Mann-Whitney tests. Responses to one open-ended question were analyzed using frequency counts and standard content analysis. Results: Compared to BCS who reported palpitations to a provider (n = 34), BCS who did not report their palpitations (n = 18) were significantly more anxious (p = 0.002) and more likely to feel palpitations as an irregular heartbeat (70.6% versus 38.9%, p = 0.027). Among the 34 BCS who reported palpitations to a provider, 32 completed the open-ended question. Of these 32 BCS, a majority (n = 27, 84%) indicated their provider recommended cardiac testing and/or referral to a cardiologist. Most (n = 24) reported completing testing. Test results included diagnosis of a new arrhythmia or other cardiac abnormality (n = 11, 46%), receipt of a new prescription (n = 5, 21%), or normal results (n = 5, 21%). Five (16%) of the 32 BCS did not receive recommendations for testing or referral and felt their provider normalized or dismissed their symptoms. Conclusion: Palpitations are a salient topic for further research and clinical practice recommendations to address cardiac health in BCS.Item Associating Persistent Self-Reported Cognitive Decline with Neurocognitive Decline in Older Breast Cancer Survivors Using Machine Learning: The Thinking and Living with Cancer Study(Elsevier, 2022) Van Dyk, Kathleen; Ahn, Jaeil; Zhou, Xingtao; Zhai, Wanting; Ahles, Tim A.; Bethea, Traci N.; Carroll, Judith E.; Cohen, Harvey Jay; Dilawari, Asma A.; Graham, Deena; Jacobsen, Paul B.; Jim, Heather; McDonald, Brenna C.; Nakamura, Zev M.; Patel, Sunita K.; Rentscher, Kelly E.; Saykin, Andrew J.; Small, Brent J.; Mandelblatt, Jeanne S.; Root, James C.; Radiology and Imaging Sciences, School of MedicineIntroduction: Many cancer survivors report cognitive problems following diagnosis and treatment. However, the clinical significance of patient-reported cognitive symptoms early in survivorship can be unclear. We used a machine learning approach to determine the association of persistent self-reported cognitive symptoms two years after diagnosis and neurocognitive test performance in a prospective cohort of older breast cancer survivors. Materials and methods: We enrolled breast cancer survivors with non-metastatic disease (n = 435) and age- and education-matched non-cancer controls (n = 441) between August 2010 and December 2017 and followed until January 2020; we excluded women with neurological disease and all women passed a cognitive screen at enrollment. Women completed the FACT-Cog Perceived Cognitive Impairment (PCI) scale and neurocognitive tests of attention, processing speed, executive function, learning, memory and visuospatial ability, and timed activities of daily living assessments at enrollment (pre-systemic treatment) and annually to 24 months, for a total of 59 individual neurocognitive measures. We defined persistent self-reported cognitive decline as clinically meaningful decline (3.7+ points) on the PCI scale from enrollment to twelve months with persistence to 24 months. Analysis used four machine learning models based on data for change scores (baseline to twelve months) on the 59 neurocognitive measures and measures of depression, anxiety, and fatigue to determine a set of variables that distinguished the 24-month persistent cognitive decline group from non-cancer controls or from survivors without decline. Results: The sample of survivors and controls ranged in age from were ages 60-89. Thirty-three percent of survivors had self-reported cognitive decline at twelve months and two-thirds continued to have persistent decline to 24 months (n = 60). Least Absolute Shrinkage and Selection Operator (LASSO) models distinguished survivors with persistent self-reported declines from controls (AUC = 0.736) and survivors without decline (n = 147; AUC = 0.744). The variables that separated groups were predominantly neurocognitive test performance change scores, including declines in list learning, verbal fluency, and attention measures. Discussion: Machine learning may be useful to further our understanding of cancer-related cognitive decline. Our results suggest that persistent self-reported cognitive problems among older women with breast cancer are associated with a constellation of mild neurocognitive changes warranting clinical attention.Item Barriers and Facilitators to Implementing Patient-Reported Outcome Monitoring in Gastrointestinal Surgery(Elsevier, 2023) Iroz, Cassandra B.; Johnson, Julie K.; Ager, Meagan S.; Joung, Rachel Hae-Soo; Brajcich, Brian C.; Cella, David; Franklin, Patricia D.; Holl, Jane L.; Bilimoria, Karl Y.; Merkow, Ryan P.; Surgery, School of MedicineIntroduction: More than 30% of patients experience complications after major gastrointestinal (GI) surgery, many of which occur after discharge when patients and families must assume responsibility for monitoring. Patient-reported outcomes (PROs) have been proposed as a tool for remote monitoring to identify deviations in recovery, and recognize and manage complications earlier. This study's objective was to characterize barriers and facilitators to the use of PROs as a patient monitoring tool following GI surgery. Methods: We conducted semistructured interviews with GI surgery patients and clinicians (surgeons, nurses, and advanced practitioners). Patients and clinicians were asked to describe their experience using a PRO monitoring system in three surgical oncology clinics. Using a phenomenological approach, research team dyads independently coded the transcripts using an inductively developed codebook and the constant comparative approach with differences reconciled by consensus. Results: Ten patients and five clinicians participated in the interviews. We identified four overarching themes related to functionality, workflow, meaningfulness, and actionability. Functionality refers to barriers faced by clinicians and patients in using the PRO technology. Workflow represents problematic integration of PROs into the clinical workflow and need for setting expectations with patients. Meaningfulness refers to lack of patient and clinician understanding of the impact of PROs on patient care. Finally, actionability reflects barriers to follow-up and practical use of PRO data. Conclusions: While use of PRO systems for postoperative patient monitoring have expanded, significant barriers persist for both patients and clinicians. Implementation enhancements are needed to optimize functionality, workflow, meaningfulness, and actionability.Item Comparison of Patient-Reported Outcomes after Local Flap Coverage versus Amputation for Complex Lower Extremity Trauma(Thieme, 2024-10-24) Bhagat, Neel; Drake, Connor; Dawson, Steven; Loewenstein, Scott N.; Knox, Kevin R.; Adkinson, Joshua M.; Hassanein, Aladdin H.; Bamba, Ravinder; Surgery, School of MedicineBackground: There is a paucity of patient-reported outcomes (PROs) data in lower extremity salvage. Limb salvage can often be achieved with the use of local muscle flaps or fasciocutaneous flaps. The purpose of this study was to compare PROs of patients who underwent lower extremity salvage using local fasciocutaneous flaps or muscle flaps to lower extremity amputation. Materials and Methods: The outcomes of 61 patients that underwent lower extremity local flap reconstruction ( n = 33) or amputation ( n = 28) between 2014 and 2020 were recorded. Chart reviews were performed to collect perioperative data. Patients were contacted via telephone for participation in the survey portion of our study. PROs were recorded utilizing both the Lower Extremity Functional Scale (LEFS) and the 36-Item Short-Form Health Survey (SF-36). Results: Surveys were completed by 61 patients (response rate 59.2%). The mean time of survey after flap reconstruction or amputation was 2.7 ± 1.4 years. Recent trauma (within 90 days) was the most common indication for local flap coverage ( n = 23). LEFS score and SF-36 physical functioning scores were significantly lower in patients who underwent muscle flaps compared with fasciocutaneous flaps ( p = 0.021 and p = 0.022). Muscle flap patients had similar LEFS and SF-36 scores to amputation patients, while fasciocutaneous flap patients had significantly higher LEFS ( p = 0.01), SF-36 physical functioning ( p = 0.031), physical role functioning ( p = 0.031), and emotional role functioning ( p = 0.047) scores than amputation patients. Conclusion: Patients who underwent local fasciocutaneous flaps for limb salvage reported higher PRO scores than those undergoing amputation, while patients undergoing muscle flaps reported outcomes similar to those undergoing amputation. PROs for muscle flap patients were significantly lower than those of fasciocutaneous flap patients. These data suggest that while fasciocutaneous and muscle flaps are both useful limb salvage procedures, fasciocutaneous flaps may confer advantages that result in improved patient-perceived outcomes. Further study is needed to better characterize outcomes in limb salvage.Item Development of a Family-Centered Communication Tool for Kidney Health in Premature Infants: Qualitative Focus Group Study Using Human-Centered Design Methodology(JMIR, 2023-07-10) Starr, Michelle C.; Wallace, Samantha; Moore, Courtney; Cockrum, Brandon; Hawryluk, Bridget; Carroll, Aaron; Bennett, William, Jr.; Pediatrics, School of MedicineBackground: Premature infants are at increased risk of kidney-related complications, including acute kidney injury (AKI) and chronic kidney disease (CKD). The risk of CKD in prematurely born infants is underrecognized by health care teams and caregivers. Understanding how to communicate the risk of CKD to caregivers is essential for longitudinal clinical follow-up and adherence. Objective: This study aimed to determine family caregiver attitudes toward kidney health and risk communication during a neonatal intensive care admission. We also sought to understand caregiver preferences for the communication of information surrounding the risk of CKD in premature infants. Methods: We augmented standard qualitative group sessions with human-centered design methods to assess parent preferences and clinician perspectives. Caregivers recruited had a prematurely born child who spent time in the neonatal intensive care unit at Riley Hospital for Children in Indianapolis, Indiana, and experienced AKI or another kidney complication, which put them at risk for future CKD. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: A total of 7 clinicians and 8 caregivers participated in 3 group sessions. Caregivers and clinicians readily acknowledged barriers to and drivers of long-term kidney monitoring as well as opportunities for communication of the risk of long-term kidney disease. Caregivers' primary concerns were for both the type and depth of information conveyed as well as the time at which it was communicated. Participants emphasized the importance of collaboration between the hospital care team and the primary care provider. Participant input was synthesized into several prototype concepts and, ultimately, into a rough prototype of a website and an informational flyer. Conclusions: Caregivers of premature infants are open to communication about kidney health during their neonatal admission. The next phase of this work will translate caregivers' preferences into family-centered communication tools and test their efficacy in the neonatal intensive care unit.Item Differential clinical characteristics across traditional Chinese medicine (TCM) Syndromes in patients with sickle cell disease(Frontiers Media, 2024-01-05) Wang, Ying; Wang, David D.; Pucka, Andrew Q.; O’Brien, Andrew R. W.; Harte, Steven E.; Harris, Richard E.; Anesthesia, School of MedicineBackground: Pain is a common, debilitating, and poorly understood complication of sickle cell disease (SCD). The need for clinical pain management of SCD is largely unmet and relies on opioids as the main therapeutic option, which leads to a decreased quality of life (QoL). According to the literature, acupuncture has shown certain therapeutic effects for pain management in SCD. However, these clinical studies lack the guidance of Traditional Chinese Medicine (TCM) Syndrome Differentiation principles for treatment. Aim: To characterize differences in clinical presentation amongst TCM diagnosed Syndromes in SCD patients. Method: Fifty-two patients with SCD and 28 age- and sex-matched healthy controls (HCs) were enrolled in an ongoing trial of acupuncture. Each participant completed a series of questionnaires on pain, physical function, fatigue, sleep, anxiety, depression and QoL and underwent cold- and pressure-based quantitative sensory testing at baseline. Data on prescription opioid use over the 12 months prior to study enrollment was used to calculate mean daily morphine milligram equivalents (MME). Differences among the three TCM Syndromes were analyzed by one-way ANOVA followed by Tukey post hoc testing. Two-sample t-tests were used to compare SCD and HC groups. Results: TCM diagnosis criteria classified SCD patients into one of three TCM Syndromes: (a) Equal; (b) Deficiency; and (c) Stagnation. The Stagnation group exhibited higher pain interference, physical dysfunction, nociplastic pain, fatigue, anxiety, depression, MME consumption and lower sleep quality and QoL compared to the Equal group. Few differences were observed between HCs and the Equal SCD group across outcomes. Deficiency and Stagnation groups were differentiated with observed- and patient-reported clinical manifestations. Conclusion: These findings suggest that TCM diagnosed Syndromes in SCD can be differentially characterized using validated objective and patient-reported outcomes. Because characteristics of pain and co-morbidities in each SCD patient are unique, targeting specific TCM "Syndromes" may facilitate treatment effectiveness with a Syndrome-based personalized treatment plan that conforms to TCM principles. These findings lay the foundation for the development of tailored acupuncture interventions based on TCM Syndromes for managing pain in SCD. Larger samples are required to further refine and validate TCM diagnostic criteria for SCD.Item An Evaluation of the Spread and Scale of PatientToc™ from Primary Care to Community Pharmacy Practice for the Collection of Patient-Reported Outcomes: A Study Protocol(Elsevier, 2021) Snyder, Margie E.; Chewning, Betty; Kreling, David; Perkins, Susan M.; Knox, Lyndee M.; Adeoye-Olatunde, Omolola A.; Jaynes, Heather A.; Schommer, Jon C.; Murawski, Matthew M.; Sangasubana, Nisaratana; Hillman, Lisa A.; Curran, Geoffrey M.; Biostatistics and Health Data Science, School of MedicineBackground: Medication non-adherence is a problem of critical importance, affecting approximately 50% of all persons taking at least one regularly scheduled prescription medication and costing the United States more than $100 billion annually. Traditional data sources for identifying and resolving medication non-adherence in community pharmacies include prescription fill histories. However, medication possession does not necessarily mean patients are taking their medications as prescribed. Patient-reported outcomes (PROs), measuring adherence challenges pertaining to both remembering and intention to take medication, offer a rich data source for pharmacists and prescribers to use to resolve medication non-adherence. PatientToc™ is a PROs collection software developed to facilitate collection of PROs data from low-literacy and non-English speaking patients in Los Angeles. Objectives: This study will evaluate the spread and scale of PatientToc™ from primary care to community pharmacies for the collection and use of PROs data pertaining to medication adherence. Methods: The following implementation and evaluation steps will be conducted: 1) a pre-implementation developmental formative evaluation to determine community pharmacy workflow and current practices for identifying and resolving medication non-adherence, potential barriers and facilitators to PatientToc™ implementation, and to create a draft implementation toolkit, 2) two plan-do-study-act cycles to refine an implementation toolkit for spreading and scaling implementation of PatientToc™ in community pharmacies, and 3) a comprehensive, theory-driven evaluation of the quality of care, implementation, and patient health outcomes of spreading and scaling PatientToc™ to community pharmacies. Expected impact: This research will inform long-term collection and use of PROs data pertaining to medication adherence in community pharmacies.Item Health-related quality of life in parents and partners of people with type 1 diabetes: Development and validation of type 1 diabetes and life (T1DAL) measures(American Psychological Association, 2021) Hilliard, Marisa E.; Minard, Charles G.; Marrero, David G.; de Wit, Maartje; DuBose, Stephanie N.; Verdejo, Alandra; Jaser, Sarah S.; Kruger, Davida; Monzavi, Roshanak; Shah, Viral N.; Wadwa, R. Paul; Weinstock, Ruth S.; Thompson, Debbe; Cao, Viena T.; Anderson, Barbara J.; Medicine, School of MedicineIntroduction: Despite the significant impact of type 1 diabetes (T1D) on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with T1D. This study aimed to develop and evaluate the psychometric properties of new measures of diabetes-specific HRQOL for parents and partners of people with T1D. We report on the multistep development and validation process for the self-report Type 1 Diabetes and Life (T1DAL) measures, with versions for parents of youth age <8, 8-11, 12-17, and 18-25 years, and for partners of people age ≥18 years with T1D. Method: First, we conducted qualitative interviews (total parents/partners n = 38) to develop draft measures and piloted them (total n = 20). Next, we tested the measures' psychometric properties. Participants (total across versions n = 813) at six T1D Exchange Clinic Network sites completed the appropriate T1DAL measure and validated measures of related constructs. We then reduced each T1DAL measure to 20-30 items in length based on psychometric data and participant feedback. Eleven participants reviewed the final measures via cognitive debriefing. Results: The T1DAL measures for parents and partners demonstrated good internal consistency (α = .80-.88) and test-retest reliability (r = .73-.86). Correlations with measures of general quality of life, generic and diabetes-specific HRQOL, and diabetes burden demonstrated construct validity. Factor analyses identified 3-4 subscales/measure. Participants reported being satisfied with the shortened measures, which took 5-10 minutes to complete. Discussion: The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings.Item Incorporating PROMIS Symptom Measures into Primary Care Practice-a Randomized Clinical Trial(Springer Nature, 2018-08) Kroenke, Kurt; Talib, Tasneem L.; Stump, Timothy E.; Kean, Jacob; Haggstrom, David A.; DeChant, Paige; Lake, Kittie R.; Stout, Madison; Monahan, Patrick O.; Biostatistics, School of Public HealthBACKGROUND: Symptoms account for more than 400 million clinic visits annually in the USA. The SPADE symptoms (sleep, pain, anxiety, depression, and low energy/fatigue) are particularly prevalent and undertreated. OBJECTIVE: To assess the effectiveness of providing PROMIS (Patient-Reported Outcome Measure Information System) symptom scores to clinicians on symptom outcomes. DESIGN: Randomized clinical trial conducted from March 2015 through May 2016 in general internal medicine and family practice clinics in an academic healthcare system. PARTICIPANTS: Primary care patients who screened positive for at least one SPADE symptom. INTERVENTIONS: After completing the PROMIS symptom measures electronically immediately prior to their visit, the 300 study participants were randomized to a feedback group in which their clinician received a visual display of symptom scores or a control group in which scores were not provided to clinicians. MAIN MEASURES: The primary outcome was the 3-month change in composite SPADE score. Secondary outcomes were individual symptom scores, symptom documentation in the clinic note, symptom-specific clinician actions, and patient satisfaction. KEY RESULTS: Most patients (84%) had multiple clinically significant (T-score ≥ 55) SPADE symptoms. Both groups demonstrated moderate symptom improvement with a non-significant trend favoring the feedback compared to control group (between-group difference in composite T-score improvement, 1.1; P = 0.17). Symptoms present at baseline resolved at 3-month follow-up only one third of the time, and patients frequently still desired treatment. Except for pain, clinically significant symptoms were documented less than half the time. Neither symptom documentation, symptom-specific clinician actions, nor patient satisfaction differed between treatment arms. Predictors of greater symptom improvement included female sex, black race, fewer medical conditions, and receiving care in a family medicine clinic. CONCLUSIONS: Simple feedback of symptom scores to primary care clinicians in the absence of additional systems support or incentives is not superior to usual care in improving symptom outcomes.Item Is the impact of previous rotator cuff repair on the outcome of reverse shoulder arthroplasty clinically relevant? A systematic review of 2879 shoulders(Sage, 2024-08-10) Berk, Alexander N.; Rao, Allison J.; Obana, Kyle K.; Ifarraguerri, Anna M.; Trofa, David P.; Connor, Patrick M.; Schiffern, Shadley C.; Hamid, Nady; Saltzman, Bryan M.; Orthopaedic Surgery, School of MedicineBackground: Outcomes of reverse shoulder arthroplasty (RSA) in patients with prior rotator cuff repair (RCR) remain inconsistent. The purpose of this study, therefore, was to systematically review the current outcomes literature on RSA in patients with prior RCR and to compare the results with controls without prior RCR. Methods: A systematic review of the literature was performed, and outcome studies reporting on functional and clinical outcomes were included. Results: A total of 11 studies encompassing 2879 shoulders were included. Improvements in postoperative patient-reported outcomes (PROs) from the baseline were higher in controls including the American Shoulder and Elbow Surgeons score (47.0 vs 39.5), Simple Shoulder Test (6.0 vs 4.9), Constant score (32.6 vs 26.4), and Visual Analog Scale for pain (-5.6 vs -4.9). Improvement in range of motion was greater in the control group, including external rotation (17° vs 11°), anterior elevation (56° vs 43°), and abduction (52° vs 43°). The overall complication rate (8% vs 5%) and revision rate (3% vs 1%) were higher in the RCR group. Discussion: Differences in postoperative PROs and improvement from the baseline demonstrate a trend toward lower outcomes in patients with prior RCR but may be below the minimal clinically import difference.
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