Psychometric Validation of the Modified Functional Scale for the Assessment and Rating of Ataxia (f-SARA) in Patients With Spinocerebellar Ataxia.

This study aimed to generate evidence to support psychometric validity of the modified functional Scale for the Assessment and Rating of Ataxia (f-SARA) among patients with spinocerebellar ataxia (SCA). Psychometric measurement properties and minimal change thresholds of the f-SARA were evaluated using data from a cohort of SCA subjects (recruited at Massachusetts General Hospital [MGH]; n = 33) and data from a phase 3 trial of troriluzole in adults with SCA (NCT03701399 [Study 206]; n = 217), including a subset of patients with the SCA3 genotype (n = 89). f-SARA item ceiling effects were absent within the MGH cohort, while floor effects were present. Excellent internal consistency reliability was demonstrated (αtotal = 0.90; αitems-removed = 0.86-0.90), and item-to-total correlations were strong (r = 0.82-0.91, per item). High test-retest reliability was demonstrated with intraclass correlation coefficients of 0.91 (total) and 0.73-0.92 (items). Convergent and divergent validity was supported, with strong correlations observed between the f-SARA and similarly constructed scales (FARS-FUNC, BARS, PROM-ADL, and FARS-ADL; all p < 0.001) and weaker correlations observed among measures of differing constructs. Mean item and total scores increased with disease severity (by FARS-FUNC quartile; p < 0.001). A 1-point threshold for meaningful changes was supported as 0.5 × SD = 0.89, SEM = 1.12, and mean changes from baseline for patients classified as "improved," "no change," or "deteriorated" were -0.68, 0.02, and 0.58, respectively. Similar trends were observed in Study 206 all-SCA and SCA3 cohorts. The measurement properties of the f-SARA provide evidence of its psychometric validity, responsiveness, and suitability as a clinical outcome measure in patients with SCA, including those with SCA3.

Assessing quality of life in pulmonary arterial hypertension: An independent prognostic marker.

Pulmonary arterial hypertension (PAH, or PH Group 1), a disease of aberrant pulmonary vascular remodeling, causing progressive right heart failure (RHF) due to elevation of pulmonary vascular resistance (PVR). Patient mortality risk stratification guides choice and intensity of pharmacological intervention and is assessed by haemodynamics (especially PVR) as well as noninvasive tools including WHO functional class (FC), 6-min walk distance (6MWD), and NT-proBNP levels. Quality of life (QOL) assessment is acknowledged as a central aspect of patient-centered care, but our study sought to extend QOL's role as an additional noninvasive risk marker that could further refine risk stratification and hence therapeutic choices within a "treatment to target" paradigm (aiming to achieve low-risk status). This study found that QOL assessment using the PAH-SYMPACT© physical activity tool provided enhanced, independent mortality risk information, with one unit rise in this score associated with a 41% increase in likelihood risk (odds ratio 1.41, 95% confidence interval: 1.01-1.98 (p < 0.05)) of falling within intermediate versus low-group category. We therefore found further support for additional prognostic value being conferred by measurement of QOL as part of routine PAH evaluation, reinforcing its critical role.

Adjusting Clinical Plans Based on Social Context.

BACKGROUND: Social risk data collection is expanding in community health centers (CHCs). We explored clinicians' practices of adjusting medical care based on their awareness of patients' social risk factors-that is, changes they make to care plans to mitigate the potential impacts of social risk factors on their patients' care and health outcomes-in a set of Texas CHCs. METHODS: Convergent mixed methods. Surveys/interviews explored clinician perspectives on adjusting medical care based on patient social risk factors. Survey data were analyzed with descriptive statistics; interviews were analyzed using thematic analysis and inductive coding. RESULTS: Across 4 CHCs, we conducted 15 clinician interviews and collected 97 surveys. Interviews and surveys overall indicated support for adjustment activities. Two main themes emerged: 1) clinicians reported making frequent adjustments to patient care plans based on their awareness of patients' social contexts, while simultaneously expressing concerns about adjustment; and 2) awareness of patients' social risk factors, and clinician time, training, and experience all influenced clinician adjustments. CONCLUSIONS: Clinicians at participating CHCs described routinely adjusting patient care plans based on their patients' social contexts. These adjustments were being made without specific guidelines or training. Standardization of adjustments may facilitate the contextualization of patient care through shared decision making to improve outcomes.

Variable Impact of Medical Scribes on Physician Electronic Health Record Documentation Practices: A Quantitative Analysis Across a Large, Integrated Health-System.

BACKGROUND: Medical scribes have been utilized to reduce electronic health record (EHR) associated documentation burden. Although evidence suggests benefits to scribes, no large-scale studies have quantitatively evaluated scribe impact on physician documentation across clinical settings. This study aimed to evaluate the effect of scribes on physician EHR documentation behaviors and performance. METHODS: This retrospective cohort study used EHR audit log data from a large academic health system to evaluate clinical documentation for all ambulatory encounters between January 2014 and December 2019 to evaluate the effect of scribes on physician documentation behaviors. Scribe services were provided on a first-come, first-served basis on physician request. Based on a physician's scribe use, encounters were grouped into 3 categories: never using a scribe, prescribe (before scribe use), or using a scribe. Outcomes included chart closure time, the proportion of delinquent charts, and charts closed after-hours. RESULTS: Three hundred ninety-five physicians (23% scribe users) across 29 medical subspecialties, encompassing 1,132,487 encounters, were included in the analysis. At baseline, scribe users had higher chart closure time, delinquent charts, and after-hours documentation than physicians who never used scribes. Among scribe users, the difference in outcome measures postscribe compared with baseline varied, and using a scribe rarely resulted in outcome measures approaching a range similar to the performance levels of nonusing physicians. In addition, there was variability in outcome measures across medical specialties and within similar subspecialties. CONCLUSION: Although scribes may improve documentation efficiency among some physicians, not all will improve EHR-related documentation practices. Different strategies may help to optimize documentation behaviors of physician-scribe dyads and maximize outcomes of scribe implementation.

How do users define success with a lower limb prosthesis? A focus group study.

PURPOSE: In this study, we sought to examine how lower limb prosthesis users define success, what constructs they associate with success, and what barriers and facilitators contribute to achieving success. MATERIALS AND METHODS: Purposively sampled lower limb prosthesis users were recruited to participate in a focus group study. Verbatim transcripts from focus groups were analyzed using inductive thematic analysis. Identified constructs were mapped to existing outcome measures, and a conceptual framework for success with a lower limb prosthesis was proposed. RESULTS: Thirty-one lower limb prosthesis users participated in one of five focus groups. Five themes were developed: keep moving forward, despite ups and downs; being able to live MY normal life and do the things I want to do with ease; learning what works for me and how to manage my prosthesis; only I can define my success; and what about my mental health? Several constructs that do not align with existing measures were identified, including prosthetic attention, grief/loss after amputation, and trust in prosthesis. Facilitators for success described by participants included peer connection, finding the right prosthetist, and mental health support. CONCLUSIONS: According to lower limb prosthesis users, success must be patient-driven, individually defined, and continually reassessed.

According to prosthesis users, success with a lower limb prosthesis should be patient-driven, individually defined, and continually reassessed.Lower limb prosthesis users described facilitators for success to include peer connection, finding the right prosthetist, mental health support, and access to appropriate prosthetic technology.Constructs described by lower limb prosthesis users as relating to success that are currently difficult to measure include prosthetic attention, grief/loss after amputation, prosthesis management, ability to blend in, and trust in the prosthesis.

Transitioning to home and beyond following stroke: a prospective cohort study of outcomes and needs.

INTRODUCTION: Understanding of the needs of people with stroke at hospital discharge and in the first six-months is limited. This study aim was to profile and document the needs of people with stroke at hospital discharge to home and thereafter. METHODS: A prospective cohort study recruiting individuals with stroke, from three hospitals, who transitioned home, either directly, through rehabilitation, or with early supported discharge teams. Their outcomes (global-health, cognition, function, quality of life, needs) were described using validated questionnaires and a needs survey, at 7-10 days, and at 3-, and 6-months, post-discharge. RESULTS: 72 patients were available at hospital discharge; mean age 70 (SD 13); 61% female; median NIHSS score of 4 (IQR 0-20). 62 (86%), 54 (75%), and 45 (63%) individuals were available respectively at each data collection time-point. Perceived disability was considerable at hospital discharge (51% with mRS ≥ 3), and while it improved at 3-months, it increased thereafter (35% with mRS ≥ 3 at 6-months). Mean physical health and social functioning were "fair" at hospital discharge and ongoing; while HR-QOL, although improved over time, remained impaired at 6-months (0.69+/-0.28). At 6-months cognitive impairment was present in 40%. Unmet needs included involvement in transition planning and care decisions, with ongoing rehabilitation, information, and support needs. The median number of unmet needs at discharge to home was four (range:1-9), and three (range:1-7) at 6-months. CONCLUSION: Stroke community reintegration is challenging for people with stroke and their families, with high levels of unmet need. Profiling outcomes and unmet needs for people with stroke at hospital-to-home transition and onwards are crucial for shaping the development of effective support interventions to be delivered at this juncture. ISRCTN REGISTRATION: 02/08/2022; ISRCTN44633579.

Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice.

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

Testing a Cloud-Based Model for Active Surveillance of Medical Devices with Analyses of Coronary Stent Safety Using the Data Extraction and Longitudinal Trend Analysis (DELTA) System.

Objective: To demonstrate the use of the Data Extraction and Longitudinal Trend Analysis (DELTA) system in the National Evaluation System for health Technology's (NEST) medical device surveillance cloud environment by analyzing coronary stent safety using real world clinical data and comparing results to clinical trial findings. Design and Setting: Electronic health record (EHR) data from two health systems, the Social Security Death Master File, and device databases were ingested into the NEST cloud, and safety analyses of two stents were performed using DELTA. Participants and Interventions: This is an observational study of patients receiving zotarolimus drug-eluting coronary stents (ZES) or everolimus eluting coronary stents (EES) between July 1, 2015 and December 31, 2017. Results: After exclusions, 3334 patients receiving EES and 1002 receiving ZES were available for study. Analysis using inverse probability weighting showed no significant difference in one-year mortality or major adverse cardiac events (MACE) for EES compared to ZES [Mortality Odds Ratio 0.94 (95% CI 0.81-1.175); p = 0.780] [MACE Odds Ratio 1.04 (95% CI 0.92-1.16; p = 0.551]). Analysis using propensity matching showed no significant difference in EES one-year mortality (547 of 992 alive and available after censoring) compared to ZES (546 of 992) [Log-Rank statistic 0.3348 (p = 0.563)]. Conclusion: Automated cloud-based medical device safety surveillance using EHR data is feasible and was efficiently performed using DELTA. No statistically significant differences in 1-year safety outcomes between ZES and EES were identified using two statistical approaches, consistent with randomized trial findings.

Post-parotidectomy facial nerve rehabilitation outcomes: Comparison between benign and malignant neoplasms.

BACKGROUND: Facial nerve dysfunction can be a devastating trouble for post-parotidectomy patients. OBJECTIVE: To assess rehabilitation outcomes concerning patients with post-parotidectomy facial nerve dysfunction, comparing benign versus malignant neoplasms. METHODS: Prospective study enrolling adults who underwent parotidectomy with facial nerve sparing between 2016 and 2020. The Modified Sunnybrook System (mS-FGS) was used for facial assessments. Physiotherapy began on the first post-operative day with a tailored program of facial exercises based on Neuromuscular Retraining, to be performed at home 3 times/day. From the first outpatient consultation, Proprioceptive Neuromuscular Facilitation was added to the treatment of cases with moderate or severe facial dysfunctions. RESULTS: Benign and malignant groups had a statistically significant improvement in mS-FGS (p < 0.001 and p = 0.005, respectively). There was no significant difference between groups regarding treatment duration or number of physiotherapy sessions performed. The history of previous parotidectomy resulted in more severe initial dysfunctions and worse outcome. Age over 60 years and initially more severe dysfunctions impacted the outcome. CONCLUSION: Patients with benign and malignant parotid neoplasms had significant and equivalent improvement in postoperative facial dysfunction following an early tailored physiotherapy program, with no significant difference in the final facial score, treatment duration, or number of sessions required.

Evaluation and recommendations of the oral health, oral function, and orofacial aesthetics-related measures of the ICHOM Standard Set for Cleft Lip and Palate.

This study was performed to evaluate the efficacy of outcome measures for the orofacial domain included in the International Consortium for Health Outcomes Measurement Standard Set for Cleft Lip and Palate (ICHOM-SCS). In this multicentre study involving two cleft centres, suggestions to optimize the type and timing of outcome measures were made based on data and clinical experience. Patient-reported outcome measures (PROMs) (CLEFT-Q Jaw, Teeth, Eating/Drinking; Child Oral Health Impact Profile-Oral Symptoms Scale (COHIP-OSS)) and clinical outcome measures (caries experience and dental occlusion) data were collected retrospectively for age 5, 8, 10, 12, 19, and 22 years. The data were categorized by cleft type and analysed within and between age groups using Spearman correlation, the distribution of responses per item, a two-sample test for equality of proportions, and effect plots. Most correlations between PROMs and clinical outcome measures were weak (r < 0.5), suggesting PROMs and clinical outcome measures complement each other. The COHIP-OSS and CLEFT-Q Eating/Drinking barely detected problems in any patient category and are no longer recommended. A suitable alternative appears complex to find; outcomes of this study and the recent literature doubt an added value. Similar problems were found in the CLEFT-Q Jaw at time-point 12 years. Therefore, time-points 15 and 17 years are currently suggested.

Prevalence of Delirium After Abdominal Surgery and Association With Ketamine: A Retrospective, Propensity-Matched Cohort Study.

IMPORTANCE: Delirium is a common postoperative complication for older patients in the ICU. Ketamine, used primarily as an analgesic, has been thought to prevent delirium. OBJECTIVE: Determine the prevalence and association of delirium with low-dose ketamine use in ICU patients after abdominal surgery. DESIGN: Single-center, retrospective, propensity-matched cohort study. SETTING: Eight hospital academic medical center. PATIENTS: Cohort comprising 1836 patients admitted to the ICU after abdominal surgery between June 23, 2018 and September 1, 2022. MAIN OUTCOMES AND MEASURES: Propensity score matching (PSM) with a 3:1 ratio between no-ketamine use and ketamine use was performed through a greedy algorithm (caliper of 0.005). Outcomes of interest included: delirium (assessed by Confusion Assessment Method-ICU), mean pain score (Numeric Pain Scale or Critical Care Pain Observation Tool score as available), mean opioid consumption (morphine milligram equivalents), length of stay (d), and mortality. RESULTS: Prevalence of delirium was 47.71% (95% CI, 45.41-50.03%) in the cohort. Of 1836 patients, 120 (6.54%) used low-dose ketamine infusion. After PSM, the prevalence of delirium was 56.02% (95% CI, 51.05-60.91%) in all abdominal surgery patients. The ketamine group had 41% less odds of delirium (odds ratio [OR] = 0.59; 95% CI, 0.37-0.94; p = 0.026) than patients with no-ketamine use. Patients with ketamine use had higher mean pain scores (3.57 ± 2.86 vs. 2.21 ± 2.09, p < 0.001). In the subgroup analysis, patients in the ketamine-use group 60 years old or younger had 64% less odds of delirium (OR = 0.36; 95% CI, 0.13-0.95; p = 0.039). The mean pain scores were higher in the ketamine group for patients 60 years old or older. There was no significant difference in mortality and opioid consumption. CONCLUSIONS AND RELEVANCE: Low-dose ketamine infusion was associated with lower prevalence of delirium in ICU patients following abdominal surgery. Prospective studies should further evaluate ketamine use and delirium.

Razão de mortalidade hospitalar padronizada: limites e potencialidades do indicador para a avaliação do desempenho hospitalar no Sistema Único de Saúde, Brasil / Hospital standardized mortality ratio: limits and potential of the indicator for assessing hospital performance in the Brazilian Unified National Health System / Razón de mortalidad hospitalaria estandarizada: límites y potencialidades del indicador para la evaluación del desempeño hospitalario en el Sistema Único de Salud, Brasil

Resumo: Análises comparativas, baseadas em indicadores de desempenho clínico, para monitorar a qualidade da assistência hospitalar vêm sendo realizadas há décadas em vários países, com destaque para a razão de mortalidade hospitalar padronizada (RMHP). No Brasil, ainda são escassos os estudos e a adoção de instrumentos metodológicos que permitam análises regulares do desempenho das instituições. O objetivo deste artigo foi explorar o uso da RMHP para a comparação do desempenho dos hospitais remunerados pelo Sistema Único de Saúde (SUS). O Sistema de Informações Hospitalares foi a fonte de dados sobre as internações de adultos realizadas no Brasil entre 2017 e 2019. A abordagem metodológica para estimar a RMHP foi adaptada aos dados disponíveis e incluiu as causas de internação (diagnóstico principal) responsáveis por 80% dos óbitos. O número de óbitos esperados foi estimado por um modelo de regressão logística que incluiu variáveis preditoras amplamente descritas na literatura. A análise foi realizada em duas etapas: (i) nível da internação e (ii) nível do hospital. O modelo final de ajuste de risco apresentou estatística C de 0,774, valor considerado adequado. Foi observada grande variação da RMHP, especialmente entre os hospitais com pior desempenho (1,54 a 6,77). Houve melhor desempenho dos hospitais privados em relação aos hospitais públicos. Apesar de limites nos dados disponíveis e desafios ainda vislumbrados para a sua utilização mais refinada, a RMHP é aplicável e tem potencial para se tornar um elemento importante na avaliação do desempenho hospitalar no SUS.

Abstract: Comparative analyses based on clinical performance indicators to monitor the quality of hospital care have been carried out for decades in several countries, most notably the hospital standardized mortality ratio (HSMR). In Brazil, studies and the adoption of methodological tools that allow regular analysis of the performance of institutions are still scarce. This study aimed to assess the use of HSMR to compare the performance of hospitals funded by the Brazilian Unified National Health System (SUS). The Hospital Information System was the source of data on adult hospitalizations in Brazil from 2017 to 2019. The methodological approach to estimate HSMR was adapted to the available data and included the causes of hospitalization (main diagnosis) responsible for 80% of deaths. The number of expected deaths was estimated using a logistic regression model that included predictor variables widely described in the literature. The analysis was conducted in two stages: (i) hospitalization level and (ii) hospital level. The final risk adjustment model showed a C-statistic of 0.774, which is considered adequate. The variation in HSMR was wide, especially among the worst-performing hospitals (1.54 to 6.77). Private hospitals performed better than public hospitals. Although the limits of the available data and the challenges still face its more refined use, HSMR is applicable and has the potential to become an important tool for assessing hospital performance in the SUS.

Resumen: Durante décadas se han realizado en varios países análisis comparativos basados en indicadores de desempeño clínico para monitorear la calidad de la atención hospitalaria, con énfasis en la razón de mortalidad hospitalaria estandarizada (RMHE). En Brasil, aún son escasos los estudios y la adopción de instrumentos metodológicos que permitan análisis regulares del desempeño de las instituciones. El objetivo fue explorar el uso de la RMHE para comparar el desempeño de los hospitales remunerados por el Sistema Único de Salud (SUS). El Sistema de Información Hospitalaria fue la fuente de datos sobre las hospitalizaciones de adultos realizadas en Brasil entre el 2017 y el 2019. El enfoque metodológico para estimar la RMHE se adaptó a los datos disponibles e incluyó las causas de hospitalización (diagnóstico principal) responsables del 80% de las muertes. El número de muertes esperadas se estimó mediante un modelo de regresión logística que incluyó variables predictoras ampliamente descritas en la literatura. El análisis se realizó en dos etapas: (i) nivel de la hospitalización y (ii) nivel del hospital. El modelo final de ajuste de riesgo presentó una estadística C de 0,774, valor considerado adecuado. Se observó una gran variación en la RMHE, especialmente entre los hospitales con peor desempeño (1,54 a 6,77). Hubo un mejor desempeño de los hospitales privados en comparación con los hospitales públicos. A pesar de las limitaciones de los datos disponibles y de los desafíos aún previstos para su uso más refinado, la RMHE es aplicable y tiene el potencial de convertirse en un elemento importante en la evaluación del desempeño hospitalario en el SUS.

Structural disease modification in axial spondyloarthritis.

"Disease modification" in axial spondyloarthritis (axSpA) seeks to not only alleviate clinical symptoms but also alter the disease's natural course by impeding new bone formation. Recent years have witnessed the effectiveness of treatments, including biologics and nonsteroidal anti-inflammatory drugs, in managing axSpA symptoms. Emerging evidence points toward their potential impact on slowing structural disease progression. This comprehensive review centers on the pivotal role of inhibiting new bone formation in axSpA disease modification. It delves into the significance of imaging techniques for assessing disease progression and explores the disease-modifying properties of available axSpA treatments, encompassing NSAIDs, TNF inhibitors, IL-17 inhibitors, and JAK inhibitors. This article offers valuable insights into the evolving landscape of disease modification strategies in axial spondyloarthritis, highlighting the multifaceted approaches used to attain these objectives.

Definition of malnutrition from routinely-collected data for orthopedic surgery research: the global leadership initiative on malnutrition (GLIM) tool and others.

The correct identification of malnourished patients in the context of hip, knee, or spine surgery research would enhance the quality of analytical studies investigating the prediction potential of preoperative nutritional disorders on postoperative recovery. However, accurate malnutrition screening and diagnostic assessment rely on parameters that were not routinely collected in routine practice until a few years ago. The authors of this article present substitute literature-based equations that can be built up using historical routinely collected data to classify patients that had been at risk of malnutrition or malnourished. For what concerns the risk screening, several methods are available to identify patients at risk of over- or undernutrition, encompassing the BWd (body weight difference from the ideal weight), GNRI (geriatric nutritional risk index), INA (instant nutritional assessment), LxA (combination of lymphocyte count and albumin), PMA (protein malnutrition with acute inflammation), PMAC (protein malnutrition with acute and chronic inflammation), IDM (iron deficit malnutrition), and VBD (vitamin B deficit malnutrition). Conversely, the GLIM (global leadership initiative on malnutrition) criteria can be used to assess malnutrition and diagnose subclasses of undernutrition. Rational use of these tools can facilitate the conduction of efficient prospective studies in the future, as well as bespoke retrospective cohort studies and database research.

Post-parotidectomy facial nerve function: comparison between original and modified Sunnybrook Facial Grading Systems / Função do nervo facial pós-parotidectomia: comparação entre os Sistemas Sunnybrook de Graduação Facial original e modificado

Abstract Background: Facial nerve dysfunction is the principal postoperative complication related to parotidectomy. Objective: To test the hypothesis that the modified Sunnybrook Facial Grading System (mS-FGS) is superior to the original S-FGS in the assessment of facial nerve function following parotidectomy. Methods: Prospective, longitudinal study evaluating patients with primary or metastatic parotid neoplasms undergoing parotidectomy with facial nerve-sparing between 2016 and 2020. The subjects were assessed twice, on the first postoperative day and at the first outpatient evaluation, 20-30 days post-surgery. Facial assessments were performed using the original and modified (plus showing the lower teeth) versions of the Sunnybrook System and documented by pictures and video recordings. Intra- and inter-rater agreements regarding the assessment of the new expression were analyzed. Results: 101 patients were enrolled. In both steps, the results from the mS-FGS were significantly lower (p < 0.001). Subjects with a history of previous parotidectomy and those who underwent neck dissection had more severe facial nerve impairment. The mandibular marginal branch was the most frequently injured, affecting 68.3% of the patients on the first postoperative day and 52.5% on the first outpatient evaluation. Twenty patients (19.8%) presented an exclusive marginal mandibular branch lesion. The inter-rater agreement of the new expression assessment ranged from substantial to almost perfect. The intra-rater agreement was almost perfect (wk = 0.951). Conclusion: The adoption of the Modified Sunnybrook System, which includes evaluation of the mandibular marginal branch, increases the accuracy of post-parotidectomy facial nerve dysfunction appraisal.

Resumo Antecedentes: A disfunção do nervo facial é a principal complicação pós-operatória relacionada à parotidectomia. Objetivo: Testar a hipótese de que o sistema Sunnybrook de graduação facial modificado (mS-FGS) é superior ao S-FGS original na avaliação da função do nervo facial após parotidectomia. Métodos: Estudo longitudinal prospectivo avaliando o pós-operatório de pacientes com neoplasias parotídeas primárias ou metastáticas, submetidos à parotidectomia com preservação do nervo facial, entre 2016 e 2020. Os indivíduos foram avaliados duas vezes, no primeiro dia de pós-operatório e na primeira avaliação ambulatorial, 20-30 dias após a cirurgia. As avaliações faciais foram realizadas usando as versões original e modificada (que incluem mostrar os dentes inferiores) do sistema Sunnybrook e documentadas por fotos e vídeos. Foram adicionalmente analisadas as concordâncias intra e interexaminadoras da avaliação da nova expressão. Resultados: Cento e um pacientes foram incluídos. Em ambas as etapas, os resultados do mS-FGS foram significativamente menores (p < 0,001). Indivíduos com história de parotidectomia prévia e aqueles submetidos ao esvaziamento cervical apresentaram comprometimento mais grave do nervo facial. O ramo marginal mandibular foi o mais afetado, acometendo 68,3% dos pacientes no primeiro dia de pós-operatório e 52,5% na primeira avaliação ambulatorial. Vinte pacientes (19,8%) apresentaram lesão exclusiva do ramo marginal mandibular. A concordância interexaminadores da avaliação da nova expressão variou de substancial a quase perfeita. A concordância intraexaminador foi quase perfeita (wk = 0,951). Conclusão: A adoção do sistema Sunnybrook modificado, que inclui a análise do ramo marginal mandibular, aumenta a precisão da avaliação da disfunção do nervo facial pós-parotidectomia.

Developing an Edema Clinician-Reported Outcome Measure for Nephrotic Syndrome.

Introduction: Edema is a common manifestation of proteinuric kidney diseases, but there is no consensus approach for reliably evaluating edema. The objective of this study was to develop an edema clinician-reported outcome measure for use in patients with nephrotic syndrome. Methods: A literature review was conducted to assess existing clinician-rated measures of edema. Clinical experts were recruited from internal medicine, nephrology, and pediatric nephrology practices to participate in concept elicitation using semi-structured interviews and cognitive debriefing. Qualitative analysis methods were used to collate expert input and inform measurement development. In addition, training and assessment modules were developed using an iterative process that also utilized expert input and cognitive debriefing to ensure interrater reliability. Results: While several clinician-rated measures of edema have been proposed, our literature review did not identify any studies to support the reliability or validity of these measures. Fourteen clinician experts participated in the concept elicitation interviews, and twelve participated in cognitive debriefing. A clinician-reported outcome measure for edema was developed. The measure assesses edema severity in multiple individual body parts. An online training module and assessment tool were generated and refined using additional clinician input and investigative team expertise. Conclusion: The Edema ClinRO (V1) measure is developed specifically to measure edema in nephrotic syndrome. The tool assesses edema across multiple body parts, and it includes a training module to ensure standardized administration across raters. Future examination of this measure is ongoing to establish its reliability and validity.

Use of Short Stems in Revision Total Hip Arthroplasty: A Retrospective Observational Study of 31 Patients.

Background and Objectives: Implantation of a short femoral stem in revision total hip arthroplasty (rTHA) could reduce the perioperative time, soft tissue damage, and preserve the bone stock of the proximal femur. The objective of this study was to describe the clinical and radiographic outcomes after the use of short stems in rTHA with a follow-up of 1 to 5 years. Materials and Methods: This retrospective, single center, and observational study analyzed the data of 31 patients (12 female, 19 male) with a median (interquartile range) age of 68.2 years (61.2-78.4) and BMI of 26.7 kg/m2 (24.6-29.4) who received an uncemented short femoral stem in rTHA between 2015 and 2020. Clinical outcomes were extracted from medical reports and assessed using the modified Harris Hip Score (mHHS), the numerical rating scale (NRS) for pain and satisfaction, and the UCLA Physical Activity Score. Radiographs were analyzed for stem subsidence, fixation, and bone parameters. The Wilcoxon test was used for pre-post rTHA differences (p < 0.05); clinical relevance was interpreted based on effect sizes according to Cohen's d. Results: All the clinical outcome measures improved significantly (p ≤ 0.001) at follow-up compared to preoperative status, with large effect sizes (Cohen's d) ranging from 2.8 to 1.7. At the last follow-up, the median (interquartile) mHHS was 80.9 (58.6-93.5). Stem fixation was stable in all cases. Complications included stem subsidence of 3 mm (n = 1) and 10 mm (n = 1), heterotopic ossification Brooker stage III (n = 2), intraoperative femur perforation (n = 1), periprosthetic fracture Vancouver type A (n = 1), and dislocation (n = 2). Conclusions: The good clinical results in our selective study population of patients with mild to moderate bone deficiency, supported by large effect sizes, together with a complication rate within the normal range, support the consideration of short stems as a surgical option after a thorough preoperative analysis.

Evaluación poblacional del impacto del nivel socioeconómico en los resultados clínicos en pacientes con insuficiencia cardiaca en entornos de atención integrada / Population-based evaluation of the impact of socioeconomic status on clinical outcomes in patients with heart failure in integrated care settings

Introduction and objectives: Low socioeconomic status (SES) is associated with poor outcomes in patients with heart failure (HF). We aimed to examine the influence of SES on health outcomes after a quality of care improvement intervention for the management of HF integrating hospital and primary care resources in a health care area of 209 255 inhabitants.MethodsWe conducted a population-based pragmatic evaluation of the implementation of an integrated HF program by conducting a natural experiment using health care data. We included all individuals consecutively admitted to hospital with at least one ICD-9-CM code for HF as the primary diagnosis and discharged alive in Catalonia between January 1, 2015 and December 31, 2019. We compared outcomes between patients exposed to the new HF program and those in the remaining health care areas, globally and stratified by SES.ResultsA total of 77 554 patients were included in the study. Death occurred in 37 469 (48.3%), clinically-related hospitalization in 41 709 (53.8%) and HF readmission in 29 755 (38.4%). On multivariate analysis, low or very low SES was associated with an increased risk of all-cause death and clinically-related hospitalization (all Ps <.05). The multivariate models showed a significant reduction in the risk of all-cause death (HR, 0.812; 95%CI, 0.723-0.912), clinically-related hospitalization (HR, 0.886; 95%CI, 0.805-0.976) and HF hospitalization (HR, 0.838; 95%CI, 0.745-0.944) in patients exposed to the new HF program compared with patients exposed to the remaining health care areas and this effect was independent of SES.ConclusionsAn intensive transitional HF management program improved clinical outcomes, both overall and across SES strata. (AU)

Introducción y objetivos: El nivel socioeconómico (NSE) bajo se asocia con malos resultados en pacientes con insuficiencia cardiaca (IC). Nuestro objetivo es examinar la influencia del NSE en los resultados de salud tras una intervención de mejora de la calidad en el abordaje de la IC en un área de salud integrada de 209.255 habitantes.MétodosSe efectuó una evaluación pragmática poblacional utilizando bases de datos administrativas y sanitarias. Se incluyó a todas las personas consecutivas hospitalizadas con un código CIE-9-CM de IC como diagnóstico principal y dadas de alta vivas en Cataluña entre el 1 de enero de 2015 y el 31 de diciembre de 2019. Se compararon los resultados entre los pacientes expuestos al nuevo programa de IC y los de las demás áreas asistenciales, en general y según su NSE.ResultadosSe incluyó a 77.554 pacientes. Los eventos adversos fueron: muerte en 37.469 (48,3%), hospitalización clínicamente relacionada en 41.709 (53,8%) y reingreso por IC en 29.755 (38,4%). El NSE bajo o muy bajo se asoció con un mayor riesgo de eventos clínicos adversos (p <0,05). Se observó una reducción significativa del riesgo de muerte (HR=0,812; IC95%, 0,723-0,912), hospitalización relacionada con la clínica (HR=0,886; IC95%, 0,805-0,976) y por IC (HR=0,838; IC95%, 0,745-0,944) en los pacientes expuestos al nuevo programa frente a los de las demás áreas sanitarias y este efecto fue independiente del NSE.ConclusionesUn programa de atención transicional para la IC mejoró los resultados clínicos, tanto en general como en todos los estratos de NSE. (AU)

Patient and caregiver experiences with pantothenate kinase-associated neurodegeneration (PKAN): results from a patient community survey.

BACKGROUND: Pantothenate kinase-associated neurodegeneration (PKAN) is a rare autosomal recessive genetic disorder of PANK2, which enables mitochondrial synthesis of coenzyme A. Its loss causes neurodegeneration with iron accumulation primarily in motor-related brain areas. Symptoms include dystonia, parkinsonism, and other disabilities. PKAN has been categorized as classic PKAN, with an age of onset ≤ 10 years, rapid progression, and early disability or death; and atypical PKAN, with later onset, slower progression, generally milder, and more diverse symptom manifestations. Available treatments are mostly palliative. Information on the lived experience of patients with PKAN and their caregivers or on community-level disease burden is limited. It is necessary to engage patients as partners to expand our understanding and improve clinical outcomes. This patient-oriented research study used multiple-choice and free-form question surveys distributed by patient organizations to collect information on the manifestations and disease burden of PKAN. It also assessed respondents' experiences and preferences with clinical research to inform future clinical trials. RESULTS: The analysis included 166 surveys. Most respondents (87%) were parents of a patient with PKAN and 7% were patients, with 80% from Europe and North America. The study cohort included 85 patients with classic PKAN (mean ± SD age of onset 4.4 ± 2.79 years), 65 with atypical PKAN (13.8 ± 4.79 years), and 16 identified as "not sure". Respondents reported gait disturbances and dystonia most often in both groups, with 44% unable to walk. The classic PKAN group reported more speech, swallowing, and visual difficulties and more severe motor problems than the atypical PKAN group. Dystonia and speech/swallowing difficulties were reported as the most challenging symptoms. Most respondents reported using multiple medications, primarily anticonvulsants and antiparkinsonian drugs, and about half had participated in a clinical research study. Study participants reported the most difficulties with the physical exertion associated with imaging assessments and travel to assessment sites. CONCLUSIONS: The survey results support the dichotomy between classic and atypical PKAN that extends beyond the age of onset. Inclusion of patients as clinical research partners shows promise as a pathway to improving clinical trials and providing more efficacious PKAN therapies.

Non-invasive evaluation of hepatic macrosteatosis in deceased donors.

INTRODUCTION: Liver allocation changes have led to increased travel and expenditures, highlighting the need to efficiently identify marginal livers suitable for transplant. We evaluated the validity of existing non-invasive liver quality tests and a novel machine learning-based model at predicting deceased donor macrosteatosis >30%. METHODS: We compared previously-validated non-invasive tests and a novel machine learning-based model to biopsies in predicting macrosteatosis >30%. We also tested them in populations enriched for macrosteatosis. RESULTS: The Hepatic Steatosis Index area-under-the-curve (AUC) was 0.56. At the threshold identified by Youden's J statistic, sensitivity, specificity, positive, and negative predictive values were 49.6%, 58.9%, 14.0%, and 89.7%. Other tests demonstrated comparable results. Machine learning produced the highest AUC (0.71). Even in populations enriched for macrosteatosis, no test was sufficiently predictive. CONCLUSION: Commonly used clinical scoring systems and a novel machine learning-based model were not clinically useful, highlighting the importance of pre-procurement biopsies to facilitate allocation.