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Summary: Background & Aims: Nutrition has been described as a lifestyle factor strongly associated with health phenotypes in extreme longevity. However, little is known about its relationship with health-related outcomes in centenarians. Methods: A cross-sectional study was conducted from the COOLCEN cohort. The Mini Nutritional Assessment (MNA) and the Prognostic Nutritional Index (PNI) were used to determine nutritional status, which were correlated with clinical, health status, and biochemical variables. Results: The sample included 139 centenarians, 74% (n=103) were female. Centenarians at risk of malnutrition (47%; n=66) and those with an absolute PNI value < 38.8 (54%) represented the most significant proportion. MNA was positively correlated with functional independence (r2 = 0.734, P < 0.05), cognitive assessment (r2 = 0.650, P < 0.05), and functional performance (r2 = 0.619, P < 0.05). Inadequate physical performance, frailty, sarcopenia, severe dementia, some degree of dependency, low PNI, and avoiding the use of dental prosthesis were significantly associated with nutritional vulnerability (P < 0.05). Conclusions: This study identified that nutritional status in centenarians is associated with functional and cognitive status, physical performance, use of dental prostheses, and specific biochemical and anthropometric variables. These findings are relevant for decision-making in general and specialized healthcare and for public health policymakers to build evidence-based strategies to promote healthy aging.

Aim: This study aimed to explore patients' perceptions of factors contributing to patient safety during hospitalization for COVID-19, with a focus on differences among three distinct adult age groups. Methods: A cross-sectional study was conducted. Data were collected from 533 patients hospitalized with COVID-19 in nine Brazilian university hospitals between April and December 2021. Sociodemographics, health conditions, and the Patient Measure of Safety (PMOS) data were gathered via telephone interviews. Descriptive statistics and ANOVA were used to compare the mean scores across PMOS items, domains, and total scores by age groups (18–44; 45–64; and 65+ years). Results: Patients aged 45–64 years reported the highest perception of safety, while those aged between 18 and 44 years reported the lowest. Statistically significant differences in safety perceptions were observed across age groups. The younger adult group (18–44 years) reported lower overall PMOS scores, particularly in areas such as equipment, access to resources, and organization and care planning, compared to the middle-aged group. Younger adults were more critical of aspects including attentiveness to patient concerns, availability of health professionals, space, and equipment, teamwork skills, and information sharing between the healthcare team and patients. Conclusion: Perception of factors contributing to patient safety during the COVID-19 pandemic varied across different age groups. Understanding these differences can inform the development of targeted strategies to incorporate patient perspectives into hospital safety initiatives, indicators development, and research to improve patient safety in hospital settings.

Objective: To evaluate the quality of dying and death among deceased patients with cancer in Shanghai from the perspective of healthcare providers. Methods: This cross-sectional study was conducted in Shanghai from April to July 2023. A convenience sample of 261 healthcare providers working at eight healthcare institutions participated. Each participant was asked to evaluate the quality of dying and death of one deceased patient who had been cared for recently using the Good Death Scale for patients in China (GDS-PCN). The scale included family companionship (eight items), dying with peace (six items), professional care (six items), preparation & no regrets (five items), maintaining dignity (four items), keeping autonomy (four items), and physical wellbeing (three items) seven dimensions, 36 items. Results: The total GDS-PCN score was 144.11 ± 17.86. The professional care dimension scored the highest (4.21 ± 0.58), whereas the preparation and no regret dimension scored the lowest (3.75 ± 0.70). Significant differences in the GDS-PCN scores were based on the healthcare institution grade, ward type, hospitalization duration, communication about the condition, treatment, and death-related topics with the healthcare provider, and decision-making style (P

Objective: To describe the adaptations made and to examine interrater reliability and feasibility of administering a telehealth version of the Multiple Sclerosis Functional Composite (tele-MSFC). Design: The Multiple Sclerosis Functional Composite (MSFC) is a commonly used, in-person clinical outcome assessment. It is composed of the timed 25-Foot Walk Test (T25FWT), Nine-Hole Peg Test (NHPT), and Paced Auditory Serial Addition Test (PASAT). The MSFC was adapted for videoconference administration as part of a larger clinical trial. One of the adaptations included administering a timed 12.5-Foot Walk Test (T12.5FWT) for participants who did not have adequate space in their homes for the T25FWT. Participants, examiners, and raters completed surveys online about their satisfaction and experience with tele-MSFC. Setting: Participants underwent the tele-MSFC in their homes using a laptop or smartphone while examiners scored the tele-MSFC in real-time at a remote location. Participants: Community-dwelling adults (n=61) with mild-to-moderate multiple sclerosis (MS) symptoms. Interventions: Not applicable. Main Outcome Measure: Tele-MSFC. Results: Intraclass correlation coefficients (ICC) assessed interrater reliability between the examiner and 2 independent raters who later scored a recording of the tele-MSFC. Interrater reliability was excellent (ICC>0.90) for all tests, including the T12.5FWT. Participants were highly satisfied with tele-MSFC. However, challenges included adequate space for T25FWT, technical difficulties, and safety and privacy considerations of individuals with moderate impairments who were requested to have their caregivers present during testing. Conclusion: The tele-MSFC is reliable and feasible to administer with adaptations for community-dwelling adults with mild to moderate MS symptoms. Further validation of T12.5FWT is needed.

Summary: The ultimate breast mastopexy technique allows a reliable and consistent transposition of the nipple-areolar complex (NAC) with preservation of nipple viability, sensation, and lactation potential. Ideally, good upper pole fullness with a durable result is achieved. However, as the inferior pole parenchyma often gravitates downward, the long-term result remains unsatisfactory. Anchoring remains a key procedure in autoaugmentation mammoplasty as the flap needs to be stable against gravity. We hereby describe a further refinement of a chest wall-based flap for the support of the upper pole, namely a double-pedicle tip anchor flap (DPTA-flap). By using this technique, good upper pole fullness is achieved, sensation is preserved, and lactation remains likely.Level of Evidence: V

Background: Pancreaticoduodenectomy is associated with high morbidity. Many preoperative variables are risk factors for postoperative complications, but they are primarily non-modifiable. It is not clear whether an intraoperative goal-directed fluid regimen might be associated with fewer postoperative surgical complications compared to current conservative, non-goal-directed fluid practices. We hypothesize that the use of Systolic Volume Variation (SVV)-guided intraoperative fluid administration might be beneficial. Methods: Data from 223 patients who underwent pancreaticoduodenectomy in our institution between 2015 and 2019 were reviewed. Patients were classified into two groups based on the use of intraoperative use of SVV to guide the administration of fluids. The decision to use SVV or not was made by the attending anesthesiologist. Subjects were classified into SVV-guided intraoperative fluid therapy (SVV group) and non-SVV-guided intraoperative fluid therapy (non-SVV group). Uni and multivariate regression analyses were conducted to determine if SVV-guided fluid therapy was significantly associated with a lower incidence of postoperative surgical complications, such as Postoperative Pancreatic Fistula (POPF), Delayed Gastric Emptying (DGE), among others, after adjusting for confounders. Results: Baseline, demographic, and intraoperative characteristics were similar between SVV and non-SVV groups. In the multivariate analysis, the use of SVV guidance was significantly associated with fewer postoperative surgical complications (OR = 0.48; 95% CI 0.25–0.91; p = 0.025), even after adjusting for significant covariates, such as perioperative use of epidural, pancreatic gland parenchyma texture, and diameter of the pancreatic duct. Conclusions: VV-guided intraoperative fluid administration might be associated with fewer postoperative surgical complications after pancreaticoduodenectomy.

Objective: The study aimed to investigate predictive factors associated with outcome six months after mild to moderate aneurysmal subarachnoid hemorrhage (SAH). Methods: We divided 136 patients (51 men and 85 women) after SAH (Hunt & Kosnik [H&K] grade I to III) into groups with good and poor outcome according to scores on the modified Rankin Scale (mRS) at six months after SAH onset: good outcome (mRS score, 0–1; n = 105) and poor outcome (mRS score, 2–6; n = 31). At admission, we assessed age, sex, H&K grade, and Fisher grade, and one month after aneurysmal SAH, we evaluated aneurysm location, treatment modality (coil embolization, clipping, or no surgical treatment), proportion of patients who underwent shunt placement, proportion of patients with delayed cerebral ischemia, and scores on neuropsychological tests (Mini-Mental State Examination, Raven’s Colored Progressive Matrices, Kana-hiroi Test, Trail Making Test, and Rey-Osterrieth Complex Figure Test, immediate recall). Results: H&K grade was associated with outcome (χ2 = 6.220, P = 0.005), and a significantly higher proportion of the good outcome group had an H&K grade II (P = 0.025). The good outcome group had significantly better scores on the Mini-Mental State Examination (U = 1251, P = 0.045), Raven’s Colored Progressive Matrices (U = 1224, P = 0.036), and Trail Making Test parts A (U = 1238, P = 0.043) and B (U = 1247, P = 0.048). However, we found no significant intergroup differences in the other patient demographic and disease characteristics, including age, treatment modality, and delayed cerebral ischemia, or in the other neuropsychological assessments. Binary logistic regression analysis identified H&K grade I and II as predictive factors associated with good outcome. Conclusion: Besides severity at admission as indicated by H&K grade, neuropsychological tests explicitly performed one month after mild to moderate aneurysmal SAH may help nursing staff to predict patient outcome, including possible symptoms after discharge.

Objectives: To investigate inter- and intra-rater reliability, content and concurrent validity, and practicability of the Chelsea Critical Care Physical Assessment tool (CPAx) - a measurement instrument for physical function and activity for patients with a critical illness - from multidisciplinary, German-speaking healthcare professionals., Methods: This was a prospective, longitudinal, clinimetric study. Participants who completed a novel German CPAx e-learning were invited to participate in a voluntary, web-based, piloted, two-round survey. The two rounds were separated by 3-4 weeks to limit recollection of the two patient videos within the e-learning. Following informed consent, we collected participants' characteristics, their CPAx ratings and scoring-duration for the two video cases, content validity indexes along with questions on the practicability of the CPAx. Data was analysed descriptively, quantitatively using Bayesian methods, and qualitatively with an inductive content approach., Results: In total, 61 clinicians (53 (87 %) physiotherapists, 6 (10 %) nurses, 2 (3 %) occupational therapists) from Switzerland (37 (64 %)), Germany (13 (22 %)), and Austria (8 (14 %)) participated. Inter- (n = 61) and intra-rater (n = 35) reliability for the CPAx were excellent (intraclass correlation coefficients of > 0.8). Content validity index of the CPAx showed a high relevance (> 0.9), though novice users slightly differed from the expert rating (concurrent validity). Healthcare professionals described the CPAx as a practical tool to plan and evaluate physical rehabilitation with a total scoring duration of 5 min, whereby lack of routine, time, and application were seen as barriers in clinical practice., Conclusions: This study demonstrated the German CPAx as a highly reliable (between and within raters), relevant and practical tool across professions, settings, and countries. These results support an online training, whereby future work should focus on consensus and application into clinical practice., Implications for Clinical Practice: Following an e-learning, the CPAx can be used reliably by multidisciplinary, German-speaking healthcare professionals potentially enhancing physical rehabilitation., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Sabrina Eggmann reports financial support was provided by Physioswiss. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2025 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Objective: To determine common domains across existing musculoskeletal COSs. Secondary aims were to assess the development quality of existing musculoskeletal COSs and whether development quality and patient participation was associated with domain selection., Study Design and Setting: A systematic review of musculoskeletal COSs. We searched six databases from inception until December 2023. Studies were included if they reported on the development of a COS in adults with musculoskeletal conditions for any type of intervention. Quality was assessed using the Core Outcome Set-Standards for Development recommendations. Data extracted included scope of the COS, health condition, interventions, and outcome domains. We defined a common core domain when present in >66% of all COSs. Analyses were performed using descriptive statistics., Results: We included 51 studies reporting on 40 COSs, 25 were developed for research settings only, 5 for clinical settings only and 10 for both. We identified 310 domains consisting of 255 mandatory/compulsory/not specified, 45 important, and 10 for further research. Pain (90%) and physical function (88%) were common core domains. COS development quality varied (range: 4 to 11 recommendations met); six COS met all standards. Domain definitions were provided in 13 COSs, 27 included patients or representatives in their development process, while 9 met all recommendations for the consensus process. COSs involving patients were of higher quality (median: 9 vs 5 for those not involving patients)., Conclusion: Pain and physical function core domains should be considered for inclusion in all new musculoskeletal COSs. Developers should follow COS development recommendations and include patients or their representatives., (Copyright © 2025. Published by Elsevier Inc.)

Objective: To explore what is currently known about women's breastfeeding experiences associated with maternity care in facilities that implement policies supported by the Baby-Friendly Hospital Initiative (BFHI)., Data Sources: We used the scoping review methodology of JBI. We searched the Scopus, CINAHL, Embase, MEDLINE (Ovid), and PsycINFO databases and gray literature., Study Selection: We considered articles published during or after 1991 in English. Inclusion criteria were based on the participant, concept, and context framework and included women who gave birth and initiated breastfeeding during or after maternity care in facilities that were certified through the BFHI, were working toward certification, or were implementing BFHI-aligned policies., Data Extraction: We extracted the following data from each report: author(s), year/country of publication, study design, research aim, patient population/sample size, clinical setting, BFHI status, and outcomes. We further extracted relevant outcomes by using concepts from the interactive theory of breastfeeding., Data Synthesis: We included 44 reports of studies conducted in 19 countries in the review: 27 quantitative, 9 qualitative, and 8 mixed-methods studies. We mapped the extracted data to 10 concepts from the interactive theory of breastfeeding to classify patient experiences, including dynamic interaction between mother and child; stress; time; woman's and child's biological conditions; woman's and child's perception; woman's decision-making; family and social authority; woman's body image; space; and organizational systems for the protection, promotion, and support of breastfeeding., Conclusion: We found that various interrelated factors in addition to BFHI-specific policies influenced women's experiences. Based on these results, we suggest that awareness of women's personal breastfeeding experiences is crucial to delivering optimal care and developing evidence-based policies. Breastfeeding practice guidelines and policies should be developed to encompass women's experiences to enhance future inpatient breastfeeding support., Competing Interests: Conflict of Interest The authors report no conflicts of interest or relevant financial relationships., (Copyright © 2024 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.)

Objectives: This work aims to evaluate and validate the process of cross-cultural adaptation and validation of the 4-Domain Sports PROM (4-DSP) into Italian, assessing its understandability and reproducibility in all questionnaire domains for Italian-speaking patients., Methods: Cross-sectional study, level of evidence II. The questionnaire was self-administered by 100 patients (80 males and 20 females) who had undergone anterior cruciate ligament (ACL) reconstruction and had a one-year minimum follow-up. The mean age and standard deviation (SD) was 31.20 ​± ​12.65 years. According to their level of sports participation, 51% were recreational, 31% were regional, 12% were national, and 6% were international athletes. All patients filled in the 4-DSP questionnaire without direct supervision of their trainer/coach or researcher. All data were collected and processed anonymously. The translation and cultural adaptation of the 4-DSP involved six phases: (1) translation, (2) synthesis, (3) back-translation, (4) pre-test, (5) expert committee review and (6) final version approval by the author of the original version for publication., Results: The cross-cultural validation of the questionnaire 4-DSP into Italian presented a global Cronbach's alpha of 0.65, Conceptual equivalence to translation and relevance were 99.09% and 99.81%, respectively, and the percentage of agreement was 99.09%., Conclusion: The cross-culturally validated version of the 4-DSP into Italian proved to be adequately understandable and reproducible in all questionnaire domains and can be safely and reliably used in Italian-speaking patients., Level of Evidence: Study level II., Competing Interests: Declaration of competing interest The authors declare that there is no conflict of interest for any author., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Objective: To investigate the predictive validity for discharge to home or facility of 4 functional mobility outcome measures. Design: Retrospective, observational study. Setting: Urban, academic hospital in the United States. Participants: Adult patients (N=3999) admitted to medical units between June 1, 2019, and February 29, 2020, with 2 or more recorded scores on each of 4 tools: Activity Measure for Post-Acute Care (AM-PAC) 6-Clicks Basic Mobility and Daily Activity, Henry Ford Mobility Level, and The Johns Hopkins Highest Level of Mobility. Interventions: Not applicable. Main Outcome Measures: Mobility scores and discharge destination. Results: For the 3999 subjects, 51.4% went home at discharge and had higher mean scores on each measure than those not returning home. Both early (I) and later (II) time point for each measure had positive predictability for discharge home. AM-PAC 6-Clicks had the highest confidence intervals for early and later recorded scores. The c-statistic value for Basic Mobility I (cut point=16) was 0.74 and for II (cut point=18) was, 0.79. The value for Daily Activity I (cut point=18) was 0.75 and for Daily Activity II (cut point=18) was 0.80). The Johns Hopkins Highest Level of Mobility and Henry Ford Mobility Level measures were less discriminative at initial score (c-statistic 0.704 and 0.665, respectively) and final score (c-statistic 0.74 and 0.75, respectively). Conclusions: Functional outcome measures have good predictive validity for discharge destination. The AM-PAC Basic mobility score appears to have a slightly higher confidence interval than the other tools in this study design.

Objective: Our aim is to define the capabilities of radiomics in predicting pseudoprogression from pre-treatment MR images in patients diagnosed with high-grade gliomas using T1 non-contrast-enhanced and contrast-enhanced images. Material & methods: In this retrospective IRB-approved study, image segmentation of high-grade gliomas was semi-automatically performed using 3D Slicer. Non-contrast-enhanced T1-weighted images and contrast-enhanced T1-weighted images were used prior to surgical therapy or radio-chemotherapy. Imaging data was split into a training sample and an independent test sample at random. We extracted 107 radiomic features by use of PyRadiomics. Feature selection and model construction were performed using Generalized Boosted Regression Models (GBM). Results: Our cohort included 124 patients (female: n = 53), diagnosed with progressive (n = 61) and pseudoprogressive disease (n = 63) of primary high-grade gliomas. Based on non-contrast-enhanced T1-weighted images of the independent test sample, the mean area under the curve (AUC), mean sensitivity, mean specificity and mean accuracy of our model were 0.651 [0.576, 0.761], 0.616 [0.417, 0.833], 0.578 [0.417, 0.750] and 0.597 [0.500, 0.708] to predict the development of pseudoprogression. In comparison, the independent test data of contrast-enhanced T1-weighted images yielded significantly higher values of AUC = 0.819 [0.760, 0.872], sensitivity = 0.817 [0.750, 0.833], specificity = 0.723 [0.583, 0.833] and accuracy = 0.770 [0.687, 0.833]. Conclusion: Our findings show that it is possible to predict pseudoprogression of high-grade gliomas with a Radiomics model using contrast-enhanced T1-weighted images with comparatively good discriminatory power. The use of a contrast agent results in a clear added value.

Objective: To develop a minimum Adult Oral Health Standard Set (AOHSS) for use in clinical practice, research, advocacy and population health. Materials and methods: An international oral health working group (OHWG) was established, of patient advocates, researchers, clinicians and public health experts to develop an AOHSS. PubMed was searched for oral health clinical and patient-reported measures and case-mix variables related to caries and periodontal disease. The selected patient-reported outcome measures focused on general oral health, and oral health-related quality of life tools. A consensus was reached via Delphi with parallel consultation of subject matter content experts. Finally, comments and input were elicited from oral health stakeholders globally, including patients/consumers. Results: The literature search yielded 1,453 results. After inclusion/exclusion criteria, 959 abstracts generated potential outcomes and case-mix variables. Delphi rounds resulted in a consensus-based selection of 80 individual items capturing 31 outcome and case-mix concepts. Global reviews generated 347 responses from 87 countries, and the patient/consumer validation survey elicited 129 responses. This AOHSS includes 25 items directed towards patients (including demographics, the impact of their oral health on oral function, a record of pain and oral hygiene practices, and financial implications of care) and items for clinicians to complete, including medical history, a record of caries and periodontal disease activity, and types of dental treatment delivered. Conclusion: In conclusion, utilising a robust methodology, a standardised core set of oral health outcome measures for adults, with a particular emphasis on caries and periodontal disease, was developed.

Resumen: Objetivo: Pese a la importancia de la «atención centrada en la persona» (ACP), hay evidentes limitaciones para valorarla y medirla, debidas probablemente a la dificultad para definirla. El objetivo del estudio fue identificar herramientas validadas que midiesen la ACP o algunos de sus aspectos en el ámbito de la atención primaria. Diseño: Revisión sistemática. Fuentes de datos: MEDLINE, Embase, Cochrane, PSYCinfo, IME-Biomedicina, LILACS y TESEO hasta del 31 de mayo de 2018. Selección de estudios: Los criterios de inclusión fueron: a) estudios de validación de cuestionarios, revisiones sistemáticas sobre estudios de validación u otros estudios descriptivos, b) realizados todos ellos en el ámbito de la atención primaria y c) que midieran aspectos de la ACP en profesionales y/o pacientes. Dos investigadores revisaron de forma independiente los artículos y sus discrepancias fueron resueltas por un tercer investigador. Extracción de datos: Se recogieron datos sobre los aspectos de la ACP medidos, población a la que se dirige, tipo de cuestionario, y datos sobre validez y fiabilidad. Resultados: Se localizaron 1.415 artículos a los que se añadieron 54 referencias adicionales identificadas a través de referencias de los artículos de la revisión sistemática. Tras una depuración finalmente fueron 75 los artículos que cumplieron todos los criterios y 39 las herramientas identificadas y clasificadas según las dimensiones analizadas. Conclusiones: Debido a la dificultad de medir la ACP en su conjunto, la mayor parte de los artículos hacen referencia solo a alguno de sus aspectos o dimensiones, predominando la perspectiva del paciente frente a la del profesional. Estas herramientas son, no obstante, un importante punto de partida para futuros cuestionarios que intenten valorar de forma integral la ACP. Abstract: Objective: Despite the acknowledged importance of ‘Person Centered Care’ (PCC), there are obvious limitations for its determination and measurement due to the difficulty of its exact definition. The objective of our review is to identify valid tools that measure the PCC or some of its aspects in the field of Primary Health Care. Design: Systematic review Data sources: MEDLINE, Embase, Cochrane, PSYCinfo, IME-Biomedicine, LILACS and TESEO until May 31, 2018. Selection of studies: The inclusion criteria were: validation studies of questionnaires, systematic reviews of validation or other descriptive studies, all of which were carried out in the context of the Primary Health Care and that measured aspects of the PCC in professionals and/or patients. Two investigators independently reviewed the articles and their discrepancies were resolved by a third investigator. Data extraction: Data were collected on the measured ACP aspects, target population, type of questionnaire, and data on validity and reliability. Results: 1,415 articles were located, to which 54 additional references were subsequently added via cross references. Finally, there were 75 articles that fulfilled all the criteria and there were 39 which had the tools identified and classified according to the dimensions analyzed. Conclusions: Due to the difficulty of measuring PCC as a whole, most of the articles refer only to one of its aspects or dimensions, with the patient's perspective prevailing over that of the professional. All these tools are, nevertheless, an important starting point for future questionnaires that attempt an integral approach to the PCC.

Purpose: There are differences in epidemiology, etiology, and outcome in status epilepticus (SE) between developing and developed countries, which limits generalizability. We evaluated factors related to outcome at 3 months in SE patients in a developing country- Ecuador. Methods: Retrospective analysis of a prospectively collected dataset of patients treated for SE at a single hospital over 4 years, recording on 107 patients and 109 episodes, including clinical, demographic, and prognosis assessments. Results: Hospital mortality was 33%, and 38% at 3 months. Glasgow Coma Scale score pretreatment ≤12 (odds ratio = 7.7), Charlson Index of comorbidities ≥3 (odds ratio = 5.6) and brain lesion (odds ratio = 6.4) predicted high disability. History of epilepsy was associated with favorable outcome in general, and showed a positive impact on survival rates (odds ratio = 0.3), while Glasgow Coma Scale scores pretreatment ≤12 (odds ratio = 4.1) and refractory SE (odds ratio = 2.1) were associated with reduced survival rates. Acute symptomatic etiology was the most common cause of SE (58%). Etiologies with structural brain lesion showed a significantly lower survival rate (Log ranks = 0.04 and 0.003) compared to other groups. Conclusion: Mortality rate at 3 months for SE patients was high. Glasgow Coma Scale, Charlson Index, and brain lesions were associated with unfavorable outcome, including mortality. Overall, the results were similar to those reported in more developed countries, but some differences, including overall higher mortality, prevalence of nonconvulsive SE, and lack of association of age with outcome were evident.

Background: The prognosis for functional recovery is crucial for discharge planning, optimizing healthcare resources and improving recovery chances. Prediction tools are key but must be usable from the beginning of rehabilitation and easy to use in clinical routine. Simple mobility milestones have shown predictive potential for stroke recovery. This study aims to identify the most efficient milestones for predicting the severity level of stroke patients' mobility at an early stage of recovery., Methods: In this retrospective cohort study medical records from a private hospital were reviewed through convenience sampling. The data collected included the Standardized Five Questions, Functional Status Score for the Intensive Care Unit, Berg Balance Scale, and Modified Rankin Scale, all unified by the Complexity-Based Model for Categorizing Rehabilitation, establishing severity levels. To predict mobility severity levels at reevaluations, CHAID (Chi-Square Automatic Interaction Detector) decision tree analysis and exact logistic regression analysis were employed. This involved using conventional mobility milestones alongside the clinical and demographic characteristics of the patients., Results: 50 patients met the criteria from admission (Evaluation 1: first week from stroke) to the first discharge point (Evaluation 2: second week from stroke). Only 25 patients remained for the second discharge point (Evaluation 3: fourth week from stroke). There were significant differences when comparing the functional assessments. The milestones "Sitting to standing" and "Sitting unsupported" were the most efficient predictors of future mobility complexity., Conclusions: "Sitting balance" and "Sitting unsupported" were the best predictors. These simple milestones are feasible to assess in daily clinical practice., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Background: Gene therapy is designed to provide people with hemophilia B with a steady and elevated factor (F)IX activity, thereby strengthening protection and relieving the burden of frequent replacement therapy infusions. The European Medicines Agency has approved gene therapy for the severe and moderately severe forms of hemophilia B that uses the FIX-Padua variant (etranacogene dezaparvovec)., Objectives: The aim was to provide a document dedicated to hemophilia B gene therapy and give a comprehensive overview of the topic., Methods: An Italian group of experts in hemophilia carried out a narrative review of the literature and discussed during a virtual meeting several key aspects of the delivery of this treatment in Italy. The discussion covered the organizational model, the role of the multidisciplinary team, the laboratory surveillance, and the patient's journey, from the follow-up to the identification of safety issues and outcome measures., Results: This article highlights the need to follow the Hub and Spoke organizational model and sheds light on the role of each professional figure within the multidisciplinary teams to favor patient engagement, management, and retention. Moreover, this article stresses the need to perform laboratory tests for patient screening and follow-up and proposes a checklist to help patient identification. Finally, the needs of Italian hemophilia centers have been considered to ensure an efficient implementation of the care delivery model., Conclusion: It is crucial to ensure that centers are appropriately organized, equipped, and trained to adequately select patients, deliver the gene therapy, and perform follow-up., Competing Interests: Declaration of competing interests G.C. reports payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Bayer, BIOVIIIx, CSL Behring, BioMarin, Sanofi, Novo Nordisk, Takeda, Kedrion, LFB, Grifols, Roche, Sobi, and uniQure and reports participation on data safety monitoring board or advisory board for Bayer, CSL Behring, BioMarin, Sanofi, Novo Nordisk, Takeda, Kedrion, LFB, Grifols, Pfizer, Roche, and uniQure. G.D.M. reports being a speaker or a member of a speaker bureau for BioMarin, Bayer, CSL Behring, Roche, Takeda, and Viatris Pharmaceuticals and consultant or ad hoc speaker/consultant for BioMarin, Bayer, Pfizer, Takeda, and Viatris Pharmaceuticals. P.S. reports being a speaker for Bayer, CSL Behring, Stago, uniQure, Werfen, and Pfizer. S.S. has acted as a consultant for CSL Behring, Amgen, Novartis, Novo Nordisk, Sobi, and Bayer. E.B. participated in advisory boards for Amgen, Novartis, CSL Behring, Bayer, Roche, and Sobi. V.L.M. is a member of the advisory board of Pfizer, CSL Behring, and BioMarin; is a speaker for Gore and Alfasigma; and received research grants from Gilead and travel grants from Sobi, Sanofi, and Takeda. A.L. has participated in speaker bureaus for BioMarin and CSL Behring. F.P. reports consulting for and being a member of advisory boards of CSL Behring, BioMarin, Roche, Sanofi, and Sobi and is a member of the speaker’s bureau or educational programs/symposia for Takeda/Spark. E.F.G. has participated in speaker bureaus and advisory boards for BioMarin, Sobi, and Roche e Novo Nordisk. A.C.M. declares that they have no conflict of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: We have developed a new patient-centered, preference-based generic health-outcome measure, Château-Santé Base (CS-Base), which is based on a novel multiattribute preference response (MAPR) measurement framework. This study aimed to generate a first utility set for the CS-Base, making it suitable for use in health-economic evaluations., Methods: CS-Base comprises 12 health attributes: mobility, vision, hearing, cognition, mood, anxiety, pain, fatigue, social functioning, daily activities, self-esteem, and independence, each with 4 levels. Our methodology to generate utilities for the CS-Base was 2-fold. First, we derived coefficients from patient MAPR data to calculate CS-Base values. Subsequently, these were normalized to a 0.0 to 1.0 utility scale, in which 0.0 signifies dead. The dead position was estimated using general population data from a discrete choice experiment (discrete choice experiment + dead), using a division-value strategy, which localize the position of states better or worse than dead., Results: We analyzed MAPR data from 3222 patients and discrete choice experiment + dead data from 1995 respondents. All MAPR coefficients were negative, logically ordered, and significantly different from the reference level. The dead position was denoted by a division value of -148.385. Utility values spanned from -0.071 to 1.0, and only 53 of 16 777 216 states were deemed worse than dead., Conclusions: This study introduced the first CS-Base utility set, underlining a 2-step utility derivation method. This method, blending societal and patient views, surpasses traditional preference-based approaches, yielding firmer results. However, improvement of the normalization procedure is expected. Estimating CS-Base utilities is an ongoing process that gains precision over time., Competing Interests: Author Disclosures Author disclosure forms can be accessed below in the Supplemental Material section., (Copyright © 2024. Published by Elsevier Inc.)

Background: Cardiovascular disease (CVD) is the primary cause of premature morbidity and mortality in the United States and Tennessee ranks among the highest in CVD events. While patient-centered outcomes research (PCOR) evidence-based approaches that reach beyond the traditional doctor-patient visit hold promise to improve CVD care and prevent serious complications, most primary care providers lack time, knowledge, and infrastructure to implement these proven approaches. Statewide primary care quality improvement (QI) collaboratives hold potential to help address primary care needs, however, little is known regarding their effectiveness in improving uptake of PCOR evidence-based population health approaches and improving CVD outcomes. This study describes the design and implementation of a stepped-wedge cluster randomized controlled trial to assess the effectiveness of participation in a statewide quality improvement cooperative (The Tennessee Heart Health Network [TN-HHN]) on cardiovascular outcomes., Methods/design: The TN-HHN Effectiveness Study randomized 77 practices to 4 waves (i.e., clusters), with each wave beginning three months after the start of the prior wave and lasting for 18 months. All practice clusters received one of three Network interventions, and outcomes are measured for each three months both in the control phase and the intervention phase. Primary outcomes include Center for Medicare and Medicaid Services measures for aspirin use, blood pressure control, cholesterol control, and smoking cessation (ABCS)., Conclusions: This trial, upon its conclusion, will allow us to assess the effect of participation in a statewide quality improvement cooperative on cardiovascular outcomes as well as key contributors to successful practice transformation., Competing Interests: Declaration of competing interest Susan Butterworth provides consulting and training in motivational interviewing-based health coaching for organizations. All other authors have no competing interests to declare., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Objective: This study aimed to evaluate the "Value-Based Healthcare" concept of an integrated palliative care (PC) program in Bogotá, Colombia, through the measurement of health outcomes and care costs in the last 3 months of life., Methods: A multicenter, retrospective cohort study that included patients ≥18 years old who died in 2020 due to medical conditions amenable to PC. The measured health outcomes included pain, wellbeing, comfort, quality of life (QOL), and satisfaction. We analyzed the behavior of overall care costs during the last 3 months of the patients' lives and controlled for the effect of exposure to the program, considering the disease type and insurance coverage, using a linear regression model, nearest-neighbor matching, and sensitivity analysis., Results: Among patients exposed to the program, the mean pain score was 2.1/10 (± 1.3) and wellbeing was rated at 3.5/10 (± 1.0), comfort at 1.6/24 (± 1.3), QOL at 3.6/5.0 (± 0.17), and satisfaction at 9.3/100 (± 0.15). The positive changes in these scores were greater for patients who remained in the program for over 3 months. Cost reduction was demonstrated in the last 90 days of life, with statistically significant and chronologically progressive savings during the last 30 days of life exceeding 5 million pesos per patient (P < .05)., Conclusions: This study demonstrated the success of PC in reducing pain, improving wellbeing and QOL, providing comfort, and ensuring high levels of satisfaction. Moreover, PC is an effective value-based healthcare strategy and can significantly enhance the efficiency of healthcare services by reducing end-of-life healthcare costs., Competing Interests: Author Disclosures Author disclosure forms can be accessed below in the Supplemental Material section., (Copyright © 2024 International Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)

Resumen: Objetivos: Conocer la perspectiva de profesionales sobre aspectos y dimensiones que deberían formar parte indispensable de la Atención Centrada en la Persona (ACP). Diseño: Técnica Delphi. Emplazamiento: Atención Primaria. Participantes: Setenta y cuatro expertos médicos especialistas en medicina familiar y comunitaria (MF), tutores docentes, psicólogos y sociólogos distribuidos por todo el territorio nacional (enero-junio 2015). Métodos: Respondieron a tres cuestionarios: primero sobre aspectos que debería tener en cuenta un MF para realizar ACP en todas sus dimensiones. En el segundo se preguntó sobre el grado de acuerdo con cada ítem y dimensión en que lo clasificaba. Las respuestas se priorizaron en un tercer cuestionario (escala Likert, rango de puntuación 1-10). Resultados: La tasa de respuesta (TR) al primer cuestionario fue de 54,05%, obteniéndose 84 ítems, los más frecuentes Respeto y Atención Integral. El 2.° cuestionario con TR = 48,6%, obtuvo 52 ítems con acuerdo superior al 75%. La TR del tercer cuestionario fue de 52,7%, obteniendo 21 ítems con puntuación > 9. Los valores más altos correspondieron a aspectos esenciales de la ACP: respeto, atención integral, enfoque biopsicosocial, autonomía del paciente y participación en la toma de decisiones. Conclusiones: Se identificaron nuevas dimensiones: Prevención y promoción de la salud, Gestión de Recursos y Competencia Clínica; añadidas a las previamente descritas: Perspectiva biopsicosocial, Médico como persona, Paciente como persona, Relación médico-paciente y Poder y Responsabilidad compartidas.El respeto, la atención integral, el enfoque biopsicosocial, la autonomía del paciente y su participación en la toma de decisiones, son los aspectos más valorados entre los seleccionados por los profesionales participantes. Abstract: Objectives: To know the perspective of professionals on aspects and dimensions that should be an indispensable part of Person-Centered Care (PCA). Design: Delphi Technique. Location: Primary Care. Participants: 74 medical experts specializing in family and community medicine (FM), teaching tutors, psychologists and sociologists distributed throughout the national territory (January-June 2015). Methods: They responded to three questionnaires: first, on aspects that a FP should take into account to carry out PCA in all its dimensions. In the second, they asked about the degree of agreement with each item and dimension in which it was classified. The responses were prioritized in a third questionnaire (Likert scale, score range 1-10). Results: The response rate (RR) to the 1st questionnaire was 54.05%, obtaining 84 items, the most frequent Respect and Comprehensive Attention. The 2nd questionnaire with RR = 48.6%, obtained 52 items with a degree of agreement greater than 75%. The RR of the 3rd questionnaire was 52.7%, obtaining 21 items with a score> 9. The highest values corresponded to essential aspects of PCA: respect, comprehensive care, biopsychosocial approach, patient autonomy, and participation in decision-making. Conclusions: New dimensions were identified: Prevention and health promotion, Resource Management and Clinical Competence, added to those previously described: Biopsychosocial perspective, Doctor as a person, Patient as a person, Doctor-patient relationship and Shared Power and Responsibility.Respect, comprehensive care, the biopsychosocial approach, the patient's autonomy and their participation in decision-making, are the most valued aspects among those selected by the participating professionals.

Objectives: To identify the sleep-based instruments in postural care intervention research and examine whether the instruments are suitable as postural care outcome measures specifically for children with severe cerebral palsy. Data Sources: Investigators searched the electronic databases from 2 university library systems, including OVID Medline, CINAHL, OT Search, Cochrane Database of Systematic Reviews, and Health and Psychosocial Instruments for articles published between 2000 and October 2019. Study Selection: The initial search yielded 1928 abstracts. Two independent investigators identified 8 English-language peer-reviewed articles that published postural care intervention study results. Data Extraction: Investigators screened the 8 articles and found that 6 included sleep as a primary or secondary intervention outcome. The principal investigator then fully reviewed these 6 publications, recorded their sleep-related instruments, and applied Coster’s published guidelines (2013) to analyze the sleep-based instruments' suitability as outcome measures. Data Synthesis:: Collectively, the 6 studies used 8 distinct measures, 6 of which (actigraphy, Chailey Sleep Questionnaire, Pediatric Sleep Questionnaire, polysomnography, sleep diary, and Sleep Disturbance Scale for Children) underwent analysis. As stand-alone instruments, none completely met criteria for suitability as outcome measures for those with severe cerebral palsy. Conclusions: Combined use of the Sleep Disturbance Scale for Children and actigraphy may be favorable for assessing the sleep-related domains relevant to children with severe cerebral palsy. However, rehabilitation professionals should test sensitivity and specificity to understand the instruments’ ability for capturing changes in sleep from postural care intervention.

Purpose: This review discusses how breast centers can optimize patient experience scores among transgender patients., Findings: High patient experience scores impact patient care and compliance. Increased regulations have been enacted to ensure that health systems are effectively meeting the health concerns of sexual minorities. This will be reflected in the patient experience surveys. A leading patient survey will be assessed to help breast imaging centers optimize the transgender patient experience and question types will be provided., Summary: Breast Centers can be equipped to enhance the transgender patient experience., Competing Interests: Declaration of competing interest Dr. Gerlach reports no conflict of interest. Dr. Leung's disclosure includes Curemetrix, Subtle Medical, and Fujifilm., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Pediatric liver transplant (LT) recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities and questions in LT have traditionally been provider-driven. This project was a novel partnership between a learning health system dedicated to pediatric LT (Starzl Network for Excellence in Pediatric Transplantation) and a parent-led advocacy group (Transplant Families) that aimed to prepare families and providers for collaborative patient-centered outcomes research (PCOR). We developed 5 virtual modules to (1) teach participants about PCOR, and (2) elicit ideas for PCOR priorities and processes in pediatric LT. Parents and providers participated via self-guided online modules or focus groups. Participants included 240 patient partners and 133 pediatric LT providers from 16 centers over 2 years. We held 20 focus groups, including 5 to amplify underrepresented voices: young adults, Spanish speakers, and African Americans. Feedback was summarized to create a PCOR Roadmap, a guide for future PCOR in the Starzl Network, which was disseminated back to participants online and via webinars. Feedback from a diverse group of stakeholders allowed us to develop PCOR priorities and processes for the pediatric LT community. Our engagement strategies could be adapted by other transplant communities to facilitate patient and provider research partnerships., Competing Interests: Declaration of competing interest The authors of this manuscript have no conflicts of interest to disclose as described by the American Journal of Transplantation., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Objectives: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research., Design: Integrative review., Setting and Participants: Not applicable., Methods: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization., Results: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified., Conclusions and Implications: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: The COVID-19 pandemic had a profound and pervasive impact on the health of chronic care patients and disrupted care systems worldwide. Our research aimed to assess the impact of the pandemic on chronic care provision and provide recommendations for improving care provision, based on patient experiences., Design: Qualitative semi-structured interviews were held among patients with chronic obstructive pulmonary disease (COPD) or heart failure., Setting and Participants: Using stratified sampling, 23 patients with COPD, heart failure, or both were recruited to participate in semi-structured interviews. In the summer of 2021, online interviews were conducted., Methods: An iterative process was adopted to analyze the data. Going back and forth through the data and our analytical structure, we first coded the data, and subsequently developed categories, themes, and aggregate dimensions. The data were synthesized in a data structure and a data table, which were analyzed using an interpretative approach., Results: We found 3 dimensions through which care might be improved: (1) proactive and adaptive health care organization and use of innovative technologies, (2) assistance in maintaining patient resilience and coping strategies, and (3) health care built on outreaching and person-centered care enabling identification of individual patient needs. Experiences of impaired accessibility to care, altered and unmet care demands and patient needs, and the negative impact of national containment strategies on patient resilience support the need for improvement in these dimensions., Conclusions and Implications: The in-depth insight gained on the impact of the pandemic on chronic care provision was used to propose recommendations for improving care, supported by not only the what and how but also the why developments require additional efforts made by policymakers and change agents, augmented by structural use and development of innovations. Health care organizations should be enabled to rapidly respond to changing internal and external environments, develop and implement innovations, and match care to patient needs., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: The objective of this article is to describe the effects of patient demographics and examination factors on patient-reported experience in outpatient MRI examinations., Methods: This institutional review board-waived, HIPPA-compliant quality improvement study evaluated outpatient MRI appointments from March 2021 to January 2022 using a postappointment survey consisting of a 5-point emoji scale and text-based feedback. Patient demographics and examination information were extracted from electronic medical records. Ratings ≤ 3 were categorized as negative, and ratings ≥ 4 were categorized as positive. Continuous variables were analyzed using the Kruskal-Wallis test, and categorical variables were analyzed using the Fisher's exact test. A P value less than .05 was considered significant. A natural language processing algorithm was trained and validated to categorize patient feedback., Results: A total of 3,636 patients responded to the survey. Positive ratings had a higher proportion of male respondents compared with negative ratings (47.9% versus 37.0%, P = .004). Examination characteristics were also grouped by positive or negative rating. Patients who endured longer examination time (median 54.0 min versus 44.0 min, P < .001) and longer wait time after check-in (median 61.6 min versus 46.2 min, P < .001) were more likely to give negative ratings. The most common themes of free text feedback included excellent service (84.3%), on-time service (8.4%), and comfortable intravenous line placement (0.4%). Most common negative feedback included long wait times (10.5%), poor communication (8.4%), and physical discomfort during the examination (4.2%)., Conclusion: Male gender, short examination duration, and on-time start were associated with positive patient ratings., (Copyright © 2023. Published by Elsevier Inc.)

Objectives: The EQ-5D-5L is a commonly used health-related quality of life instrument for evaluating interventions in patients receiving dialysis; however, the minimal important difference (MID) that constitutes a meaningful treatment effect for this population has not been established. This study aims to estimate the MID for the EQ-5D-5L utility index in dialysis patients., Methods: 6-monthly EQ-5D-5L measurements were collected from adult dialysis patients between April 2017 and November 2020 at a renal network in Sydney, Australia. EQ-VAS and Integrated Palliative care Outcome Scale Renal symptom burden scores were collected simultaneously and used as anchors. MID estimates for the EQ-5D-5L utility index were derived using anchor-based and distribution-based methods., Results: A total of 352 patients with ≥1 EQ-5D-5L observation were included, constituting 1127 observations. Mean EQ-5D-5L utility index at baseline was 0.719 (SD ± 0.267), and mean EQ-5D-5L utility decreased over time by -0.017 per year (95% CI -0.029 to -0.006, P = .004). Using cross-sectional anchor-based methods, MID estimates ranged from 0.073 to 0.107. Using longitudinal anchor-based methods, MID for improvement and deterioration ranged from 0.046 to 0.079 and -0.111 to -0.048, respectively. Using receiver operating characteristic curves, MID for improvement and deterioration ranged from 0.037 to 0.122 and -0.074 to -0.063, respectively. MID estimates from distribution-based methods were consistent with anchor-based estimates., Conclusions: Anchor-based and distribution-based approaches provided EQ-5D-5L utility index MID estimates ranging from 0.034 to 0.134. These estimates can inform the target difference or "effect size" for clinical trial design among dialysis populations., Competing Interests: Author Disclosures Links to the disclosure forms provided by the authors are available here., (Copyright © 2024. Published by Elsevier Inc.)

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disorder caused by complement-mediated hemolysis and thrombosis through the alternative pathway. The most common symptom of PNH is fatigue due to chronic anemia, which can negatively impact quality of life (QoL) and affect overall well-being. The currently approved therapies for PNH significantly limit intravascular hemolysis (IVH) and reduce the risk of thrombosis; however, they are associated with an infusion schedule that can become burdensome, and not all patients experience complete disease control. Several new complement inhibitors are in development that address the need for convenient routes of administration and aim to provide better disease control. With the variety of new treatment options on the horizon, hematologic markers as well as QoL concerns, patient opinion, and lifestyle factors should be considered to choose the optimal PNH treatment for each specific patient., Competing Interests: Declaration of Competing Interest D. Dingli reports consulting for Alexion (AstraZeneca), Apellis, Bristol Myers Squibb, Genentech/Roche, Janssen, Legend Biotech, Novartis, Ossium Health, Sanofi, and Sorrento Therapeutics. Research support from K36 Therapeutics. J. Shammo reports consulting for Alexion, AstraZeneca, BMS, CTI, Incyte, Novartis, Sanofi, MJH, Apellis, NS bio, and GSK. Honoraria from Alexion, AstraZeneca, BMS, CTI, Incyte, Novartis, Sanofi, MJH, and GSK. Research support from Alexion, AstraZeneca, BMS, CTI, and Incyte. Speakers Bureau from Alexion, AstraZeneca, BMS, Incyte, and Sanofi. Membership on the Board of Directors or advisory committees for MJH, Apellis, NS bio, and GSK. A. Waheed reports consulting for Novartis and Alexion., (Copyright © 2023. Published by Elsevier Ltd.)

Objectives: To evaluate patient experience, unmet needs, and burden among patients with high-risk nonmuscle-invasive bladder cancer (HR-NMIBC) treated with Bacillus Calmette-Guérin (BCG)., Methods: This cross-sectional study included HR-NMIBC patients who received BCG treatment in the past 3 years. The study, preceded by a focused literature review, was conducted in 2 phases: 1) qualitative interviews with 32 patients in the United States (US), France, Germany, and United Kingdom (UK) and 2) quantitative survey of 150 patients in the US. Both phases of the study assessed patient characteristics, treatment history, experience, and perceptions, as well as side effects, pain, discomfort, and time burden associated with BCG treatment. The quantitative survey included additional items related to BCG treatment satisfaction, health-related quality of life (HRQoL), productivity, and healthcare resource utilization. Descriptive statistics and bivariate subgroup comparisons were reported., Results: All patients in both study phases received transurethral resection of the bladder tumor (TURBT). Nearly all patients reported keeping their bladder/avoiding radical cystectomy (RC) was important (99%). Results from the quantitative survey reported a substantial impact to cancer-specific HRQoL of patients, with lower mean scores on physical (64.7), social (62.8), and role functioning (56.7) as measured by the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-30). Most patients (69%) were satisfied overall with BCG treatment, although satisfaction declined with increased number of side effects, higher numbers of BCG administrations, and greater discomfort (all P < 0.05)., Conclusions: Most HR-NMIBC patients were satisfied overall with BCG treatment. Approximately half of the patients had stopped BCG treatment, notably, most during the induction phase, suggesting nonadherence to guidelines which recommend maintenance treatment after induction. Future treatments should focus on delaying or avoiding recurrence and cystectomy while reducing patient discomfort and discontinuation prior to completing the recommended course of treatment., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Lewis Kopenhafer and Martine C Maculaitis are employees of Oracle Life Sciences (formerly Cerner Enviza), which was a paid consultant to Pfizer in connection with the conduct of the study and development of this manuscript. Slaven Sikirica is a stockholder of Pfizer Inc and was an employee of Pfizer Inc. at the time of research. Jane Chang, Elizabeth T Masters, and Joseph C Cappelleri are stockholders and employees of Pfizer Inc. Allison Thompson was in a fellowship sponsored by Pfizer. Eugenia Y Peck was an employee of Oracle Life Sciences (formerly Cerner Enviza), which was a paid consultant to Pfizer in connection with the conduct of the study and development of this manuscript, at the time of research., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: The revised Patients' Attitudes Towards Deprescribing (rPATD) questionnaire was developed to capture beliefs and perceptions of patients about deprescribing. In general, handling of missing data is underreported in survey studies. Underlying mechanisms related to missing data may impact the findings from survey studies., Objectives: The aim of this study was to assess the missing data in studies using the rPATD questionnaire through a systematic review and datasets from two studies., Methods: First, this review updated a systematic review on the rPATD (and other versions). We searched Medline via OVID, EMBASE, Scopus, Web of Science until 31 st January 2023. Missing data reporting and methods to handle them were collected. Second, data from two deprescribing studies were analyzed using three methods of missing data handling: complete case analysis, personal mean substitution, and multiple imputation. We compared the scores from each domain and the associations of the domains with two questions from the rPATD to highlight how using different methods can influence the interpretation of study findings., Results: We identified 49 studies: 31 (63 %) from this study and 18 (37 %) from the original systematic review. The question or domain with the most missing data could be identified in 9 studies (18.4 %). Missing data management was reported in 19 studies (38.8 %). In one case analysis, the "Burden" domain was significantly associated with the question "I would like to try stopping one of my medicines to see how I feel without it" using complete case analysis (p = 0.044) or multiple imputation (p = 0.038), but not when using personal mean substitution (p = 0.057)., Conclusions: Missing data and methods used to handle missing data were underreported in studies using the rPATD questionnaire. The methods should be chosen carefully as our analyses from two distinct studies suggest that they may impact the interpretation of the findings from the questionnaire., Competing Interests: Declaration of competing interest The authors declare that they have no competing interests., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To translate, cross-culturally adapt, validate, verify the reliability and estimate the minimal detectable change (MDC) of the UEFI to Brazilian Portuguese (UEFI-Br) for burns., Methods: The study was carried out with 131 Brazilian burn cases at two time points, at discharge and at the first outpatient follow-up (15-21 days after discharge) in a Burn Treatment Center. The adaptation process of the UEFI was based on international recommendations. The Burn Specific Health Scale-Brief-Br (BSHS-B-Br) was also applied in order to analyze construct validity of the UEFI-Br and distribution-based methods were used to estimate its MDC., Results: Intra- and inter-rater reliability were good with ICC of 0.986 (CI 95 %: 0.98-0.99) and 0.969 (CI 95 %: 0.955-0.979), respectively, at discharge and 0.997 (CI 95 %: 0.996-0.998) and 0.987 (CI 95 %: 0.981-0.991), respectively, at the first outpatient follow-up appointment. We found good internal consistency with Cronbach's α values of 0.987 and 0.996, respectively, at the two times. The SEM was 4.42 and 2.31 at the first and second time points, respectively. The UEFI-Br scores demonstrated strong correlation with the Burn Specific Health Scale-Brief-Br (BSHS-B-Br) function domain scores (r = 0.87-0.90). No significant correlation was found between UEFI-Br scores and participants' characteristics. The MDC of the UEFI-Br lies between 11 and 13 points., Conclusion: The Brazilian version of the UEFI-Br, a useful tool to assess upper limb function and disability, is a valid and reliable tool for use with Brazilian burn survivors. The MDC for the instrument was determined to be 11-13 points., Competing Interests: Declaration of Competing Interest The authors have no competing interest to declare., (Copyright © 2023 Elsevier Ltd and International Society of Burns Injuries. All rights reserved.)

Background: The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients' views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs., Methods: Adult patients (≥18 years old), 3-36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (<6 months) and long-term (6-24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried., Results: A total of 140 patients were included (response rate: 27%). 'Not having pain' and 'good wound healing' were identified as very important outcomes. Also, 'physical functioning at pre-injury level', 'being independent' and 'taking care of yourself' were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients' opinions differed widely on the preferred frequency of follow-up., Conclusions: Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes., Competing Interests: Declaration of Competing Interest All authors whose names are listed immediately below have no financial and personal relationships with other people or organisations that could inappropriately influence (bias) their work. Examples of potential conflicts of interest include employment, consultancies, stock ownership, honoraria, paid expert testimony, patent applications/registrations, and grants or other funding., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: To quantify patient reported treatment burden while receiving intravesical therapy for bladder cancer and to survey patient perspectives on in-home intravesical therapy., Materials and Methods: We conducted a cross-sectional survey of the Bladder Cancer Advocacy Network Patient Survey Network. Survey questions were developed by investigators, then iteratively revised by clinician and patient advocates. Eligible participants had to have received at least 1 dose of intravesical therapy delivered in an ambulatory setting., Results: Two hundred thirty-three patients responded to the survey with median age of 70 years (range 33-88 years). Two-thirds of respondents (66%, 151/232) had received greater than 12 bladder instillations. A travel time of >30 minutes to an intravesical treatment facility was reported by 55% (126/231) of respondents. Fifty-six percent (128/232) brought caregivers to their appointments, and 36% (82/230) missed work to receive treatment. Sixty-one respondents (26%) felt the process of receiving bladder instillations adversely affected their ability to perform regular daily activities. Among those surveyed, 72% (168/232) reported openness to receiving in-home intravesical instillations and 54% (122/228) answered that in-home instillations would make the treatment process less disruptive to their lives., Conclusions: Bladder cancer patients reported considerable travel distances, time requirements, and need for caregiver support when receiving intravesical therapy. Nearly three-quarters of survey respondents reported openness to receiving intravesical instillations in their home, with many identifying potential benefits for home over clinic-based therapy., Competing Interests: Declaration of Competing Interest The authors declare the following financial or non-financial interests which may be considered as potential conflicts of interest: Mark Tyson has served as a consultant for ImmunityBio. Timothy Lyon has served as a consultant for Bristol Myers Squibb and ImmunityBio., (Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)

Rationale and Objectives: The aim of this study was to examine the impact of an educational website on patient understanding of Interventional Radiology (IR)., Material and Methods: An informational website with descriptions and images of 12 common IR procedures was developed with the aim of educating patients. One hundred patients referred to a large, academic institution were randomly selected to participate. Anonymous 11-question, 5-point Likert-scale assessments were administered before and after engaging with the educational website. The survey evaluated patients' understanding of IR procedures and satisfaction with the website as an educational tool., Results: One hundred patients completed the pre-/post-implementation evaluations. Among matched questions, there was an increase in patient understanding of IR with mean score improvement from 2.10 to 4.57 (p < 0.001), their knowledge of common procedures from 1.74 to 4.66 (p < 0.001), and their consideration for their next procedure to be with IR from 2.24 to 4.62 (p < 0.001). Additionally, patients had an overall positive impression of the website (mean 4.80). Over 75% of patients found the descriptions and images "very helpful"., Conclusion: This study demonstrated that website use for patient education has the potential to be effective in increasing overall patient understanding of IR and familiarity with common interventional procedures., Competing Interests: Declaration of competing interest The authors have no conflicts of interest to declare., (Copyright © 2023. Published by Elsevier Inc.)

Background: There is limited provision of inpatient detoxification relative to other treatments for alcohol and other drug (AOD) use. This means people often need to wait prior to detoxifying. However, waiting for healthcare is generally perceived as negative and stressful. This paper aims to understand patients' experiences of waiting for inpatient AOD detoxification to ascertain whether and how service-level policies and practices might be improved., Methods: Semi-structured telephone interviews were conducted with 32 people (20 males, 12 females; aged 25-67 years) who were waiting for inpatient detoxification. Data collection was part of a wider evaluation of a policy initiative started in 2021 to increase detoxification service capacity in England, UK. Interviews were professionally transcribed and data on waiting experiences were coded using qualitative software. Analyses were informed by new materialist thinking and undertaken via Iterative Categorisation., Results: We found that waiting was constituted through five dimensions: i. duration; ii. support; iii. information; iv. preparations; and v. emotions. These five dimensions were multi-faceted and operated in and through wider interacting social, material, and affective forces (e.g., professional judgements, formal and informal relationships, the availability of beds and funding, bureaucratic procedures, the utility and relevance of information, and participants' diverse feelings, including desperation for treatment). Not all accounts of waiting were negative. The experience was complex, non-uniform and variable over time. Moreover, it affected how people felt and how they behaved., Conclusions: Changes to service-level policies and practices can potentially minimise the stress of waiting for inpatient AOD detoxification. The negative impact of waiting may be reduced if professionals more consistently engage patients in a wider range of constructive pre-treatment activities, offer regular 'check-ins' to mitigate any anxiety, explain changes in wait duration to help with planning and demonstrate fairness, and facilitate contact between those waiting to lessen feelings of isolation., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: In the last three years, J.N. has received, through her university, research funding from Mundipharma Research Ltd and Camurus AB (for unrelated research) and honoraria from Indivior and Camurus AB (for unrelated presentations)., (Copyright © 2023 The Author(s). Published by Elsevier B.V. All rights reserved.)

Background: Although medications for opioid use disorder (MOUD) are efficacious treatments for opioid use disorder, retention remains low. Peer recovery specialists (PRSs), individuals with lived substance use and recovery experience, may be particularly well-suited to support patients receiving MOUD. While PRSs are rarely trained in evidence-based behavioral interventions other than motivational interviewing, preliminary evidence suggests that peers can deliver brief behavioral interventions, such as behavioral activation, with efficacy and fidelity. This qualitative study sought to explore patient perspectives on receiving an adapted PRS-delivered behavioral activation intervention (Peer Activate) to support patients receiving methadone treatment., Methods: The sample (N = 26) included patients recently starting or demonstrating challenges with adherence at a community-based methadone treatment program who received the Peer Activate intervention in a pilot trial. Participants were invited to participate in in-depth, semi-structured interviews at study completion or discontinuation, assessing perceived acceptability and feasibility of Peer Activate, and stigma-related barriers. Interview transcripts were coded using codebook/template thematic analysis., Results: Analysis revealed the importance of two areas to promote intervention acceptability: 1) connection with intervention content and skill building, and 2) valued PRS-specific qualities. Intervention flexibility was found to promote feasibility of the intervention in the context of chaotic and challenging life circumstances. Additionally, participants described stigma towards substance use and methadone treatment as potential barriers to engaging in methadone treatment., Conclusion: Results support the acceptability and feasibility to patients of this PRS-delivered behavioral activation intervention in the context of outpatient MOUD treatment among a low-income, majority racially minoritized patient population. Future intervention adaptation and implementation should focus on incorporating content related to relationships and interpersonal skills; balancing behavioral intervention content with system navigation support; maintaining flexibility; and further investigation of the impact of individual PRS attributes, including shared lived experiences, on intervention acceptability and shifts in stigma., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023. Published by Elsevier B.V.)

Incorporating the experiences of patients with severe mental disorders (SMD) into clinical practice offers valuable insights for optimizing psychological care's effectiveness with more patient-centered and personalized interventions. The study aimed to develop a patient-reported experience measure regarding psychological care (PREMIUM-PSY) using adaptive testing and investigate its association with quality of life. In a multicenter study involving 443 patients with SMD, PREMIUM-PSY demonstrated both validity and efficiency (6-item average). Positive patient experiences were associated with enhanced mental and physical quality of life (β = 3.15[2.17;4.12], p < 0.001 and β = 1.18[0.04;2.32], p = 0.042), suggesting PREMIUM-PSY's potential for optimizing psychological care outcomes., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 Elsevier B.V. All rights reserved.)

Several international committees involved in establishing standards of care have recommended that patients undergoing surgery for bladder outlet obstruction should be assessed with patient reported outcomes (PRO). The Patient Global Impression of Improvement (PGI-I) is an instrument designed to measure a patients interpretation of symptom changes following intervention. The objective of this study was to validate the PGI-I as a PRO assessment following surgery for bladder outflow obstruction (BOO) in men with benign prostatic hyperplasia (BPH). Methods: Men undergoing photoselective vaporisation of the prostate were followed prospectively. Pre- and postoperative International Prostate Symptom Score (IPSS), Quality of life (QoL) index, peak urinary flow (Qmax), and postvoid residual (PVR) assessments were done. The PGI-I was conducted and correlated at 3 months postoperatively to changes in IPSS, QoL, Qmax, and PVR. Results: One hundred and sixty-six consecutive patients were included. Following surgery, IPSS and QoL improved by 11 and 2.4 points (P

Research Questions: How do participants with anxiety receiving distance healing using tuning forks, experience healing sessions? What outcomes do they spontaneously report?, Theoretical Framework: Modified grounded theory, using single interviews to learn about experiences with distant sound healing., Methodology: Standardized open-ended, qualitative interviews of 30-minute length were conducted after the intervention and analyzed using an inductive and iterative process for identifying themes, categories, and patterns in qualitative data., Context: Single-arm, pilot feasibility study of Biofield Tuning (BT) for anxiety during the COVID-19 pandemic delivered at a distance facilitated by Zoom (without video)., Sample Selection: A total of 15 participants were recruited to this study: 13 completed all quantitative aspects, and the 12 who completed the interviews are reported here., Data Collection: The 30-minute qualitative interviews were designed to understand the impact of virtual BT sessions on the participant's experience, anxiety, and within the larger context of their life. The Self-Assessment of Change measured subjective shifts pre and post treatment., Analysis and Interpretation: The interviews were audio-recorded and transcribed using otter.ai. Two researchers read all the transcripts, identified key themes within the broader experience of sessions and outcomes categories, and came to consensus on key themes using a qualitative research analysis approach., Main Results: Participants were surprised by the degree to which they felt sensations and heard tuning fork changes. They commented on the accuracy of the healers' perceptions and comprehension of their life experiences. Participants reported positive shifts in perceptions of themselves and their surroundings, both interpersonally and in response to triggers. The patients' own words provide insight into the lived experiences of healing, and guide future research., (Copyright © 2023. Published by Elsevier Inc.)

Background: Patient Reported Experience Measures (PREMs) provide health organisations insight into how 'person-centric' care is. Qualitative data in PREMs surveys provide essential context about experience but are challenging to analyse at an organisational level., Objective: To co-design a person-centred coding framework to assist in the analysis of qualitative PREMs data., Patient Involvement: Consumer representatives were involved in problem identification, co-design, coding of raw data (testing), evaluation and manuscript authorship., Methodology: Co-design principles guided production of a deductive coding framework with Picker Principles of Person-Centred Care as a conceptual framework. The framework was co-designed over 4 stages, with cross-professional stakeholders (including two consumer representatives): 1) assessment of current state and understanding priorities; 2) adapting Picker Principles of Person-Centred Care as a coding framework; 3) testing and evaluation of a coding template over two quality improvement (QI) cycles against measures of inter-coder reliability and perceived usefulness; 4) endorsement and planning for implementation., Results: The Picker Principles were a suitable coding framework for inpatient PREMs data, and a coding template in an electronic spreadsheet met end-user needs. Results of the first QI cycle indicated a need for 'less academic' domain names and definitions, which were reviewed and updated to a first-person perspective in partnership with a consumer representative. Inter-coder reliability measures and qualitative feedback improved after cycle two testing and evaluation., Discussion: This single site study produced a feasible solution to apply person-centred principles to analyse PREMs data and requires testing in different settings. Cross-disciplinary partnerships enabled the development of a reliable and acceptable deductive coding framework that was usable for people without prior experience in qualitative data analysis., Practical Value: Our solution offers an example for health services to harness the value of qualitative PREMs data and partner with consumers to take person-centric action to improve the safety, equity, and experience of healthcare., Competing Interests: Declaration of Competing Interest The authors confirm there are no competing interests to declare., (Copyright © 2023 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Hereditary angioedema (HAE) is a rare inherited illness characterised by recurrent swellings. Four percent of HAE attacks are life threatening throat swellings requiring urgent medical intervention. The aim of this study was to gain an in depth understanding of patient experiences of use of treatment and emergency care., Methods: 65 participants completed an online survey including open ended questions about their experiences and/or completed an in-depth interview. Interview participants were asked to share and talk about up to five images that they felt best represented their life experiences with HAE. Data were analysed using reflexive thematic analysis., Results: Treatment experiences highlighted the life changing nature of new treatments and benefits for quality of life, but also illustrated common barriers to treatment administration. Emergency care experiences illustrated how throat attacks and fear of their future occurrence could be traumatic., Discussion: Findings indicate that HAE patients need psychological support to process fears and negative experiences. In addition, psychological barriers to treatment administration must be addressed to ensure treatment is used effectively. Education for emergency practitioners is also needed to improve emergency treatment and reduce the psychological burden of delayed emergency care., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Patient-reported outcome measures (PROMs) are patient-completed instruments that capture patient-perceived health status and well-being. PROMs measure disease impact and outcomes of care as reported by those who experience the disease. After pulmonary embolism or deep vein thrombosis, patients may face a broad spectrum of complications and long-term sequelae beyond the usual quality-of-care indicators of recurrent venous thromboembolism (VTE), bleeding complications, and survival. The full impact of VTE on individual patients can only be captured by assessing all relevant health outcomes from the patient's perspective in addition to the traditionally recognized complications. Defining and measuring all important outcomes will help facilitate treatment tailored to the needs and preferences of patients and may improve health outcomes. The International Society on Thrombosis and Haemostasis Scientific and Standardization Committee Subcommittee on Predictive and Diagnostic Variables in Thrombotic Disease endorsed the International Consortium for Health Outcomes Measurement (ICHOM) VTE project on development of a standardized set of patient-centered outcome measures for patients with VTE. In this communication, the course and result of the project are summarized, and based on these findings, we propose recommendations for the use of PROMs during clinical follow-up of patients with VTE. We describe challenges to implementation of PROMs and explore barriers and enablers., Competing Interests: Declaration of competing interests A.L.P. reports a grant from the National Institute on Aging (R03AG074074). S.C.W. reports funding for research from Bristol-Myers Squibb paid to his institution and support (expenses only) for attending Anticoagulation Forum, San Francisco, as an invited guest lecturer. F.A.K. reports grants or contracts from Bayer, BMS, BSCI, MSD, Leo Pharma, Actelion, VarmX, the Netherlands Organisation for Health Research and Development, the Dutch Thrombosis Association, the Dutch Heart Foundation, the Netherlands, and the Horizon Europe Program, all unrelated to this work and paid to his institution. C.M.M.d.J., K.d.W., S.A.B., A.M.G., C.M., H.R.-E., and R.T. have no competing interests to disclose., (Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)

Objective: To understand the experiences of patients with low-grade upper tract urothelial carcinoma via in-depth interviews covering the diagnosis, treatment, and follow-up., Methods: A qualitative study was performed using 60 minutes interviews with patients diagnosed with low-grade UTUC. The participants received either endoscopic treatment (ET), radical nephroureterectomy (RNU) or intracavity mitomycin gel for the pyelocaliceal system. Interviews were conducted by trained interviewers via telephone using a semi-structured questionnaire. The raw interviews were coded into discrete phrases that were grouped together based on similarity of meaning. Inductive data analysis methodology was used. Themes were identified and refined to overarching themes striving to encompass the original meaning and intent of participant's words., Results: Twenty individuals were enrolled; 6 were treated with ET, 8 were treated with a RNU, and 6 were treated with intracavitary mitomycin gel. The median age was 74 years (52-88) and half of participants were women. Most endorsed good, very good, or excellent health. Four unique themes were identified: 1. Misunderstandings of the nature of disease; 2. Importance of physical symptoms during treatment as a proxy for recovery; 3. Competing desires for kidney preservation versus expeditious treatment; and 4. Trust in doctors and minimal perceived shared decision-making., Conclusions: Low grade UTUC is a disease with a diverse clinical presentation and an evolving landscape of available treatments. This study provides insight into patients' perspective and can help guide counseling and treatment selection., Competing Interests: Declaration of Competing Interest Dr. Angela Smith is currently doing a study with Urogen through the Bladder Cancer (BCAN) Patient Survey Network. Dr. Brian Hu currently serves as an advisor to Urogen., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background: Abdominal surgery for gastrointestinal malignancies has a significant impact on patients' health-related quality of life. However, there is so far no patient-reported outcome measures (PROM) in the immediate postoperative period to detect the perioperative symptom burden and patients' needs which may precede occult and severe complications. The aim of the study was to create a conceptual framework for the development of a PROM to measure perioperative symptom burden in abdominal cancer patients., Methods: This mixed method study was performed between March 2021, and July 2021 as part of a multiphase approach to develop a new PROM. A systematic review of the literature was performed health domains were identified. The relevance of the health domains was assessed in a two-round Delphi study with clinical experts. Qualitative interviews were performed in patients who underwent abdominal surgery for cancer., Results: The systematic literature review yielded 12 different PROM with 168 items and 55 health domains. The most common health domains involved the "digestive system" and "pain". In total, 30 patients (median age 66 years, 20 men [60%]) were included for qualitative patient interviews. Of 16 health domains identified by the Delphi study, a total 15 health domains were confirmed during patients' interviews. The final conceptual framework included 20 health domains., Conclusion: This study provides the essential groundwork to develop and validate a new PROM for the immediate postoperative period of patients undergoing abdominal surgery for cancer., Competing Interests: Declaration of competing interest The authors declare no conflict of interest., (Copyright © 2023 Elsevier Ltd, BASO ~ The Association for Cancer Surgery, and the European Society of Surgical Oncology. All rights reserved.)

Purpose: For women diagnosed with early-stage breast cancer, lumpectomy followed by radiation therapy (RT) has been a guideline-recommended treatment. However, lumpectomy followed by hormonal therapy is also an approved treatment for certain women. It is unclear what patient-driven factors are related to decisions to receive RT. This study examined relationships between patient-reported experience of care, an important dimension of health care quality, and receipt of RT after lumpectomy., Methods and Materials: We used National Cancer Institute Surveillance, Epidemiology, and End Results data linked to the CMS Medicare Consumer Assessment of Healthcare Providers and Systems patient surveys (SEER-CAHPS) to examine experiences of care among women diagnosed with local/regional stage breast cancer 2000 to 2017 who received lumpectomy, were enrolled in fee-for-service Medicare, completed a CAHPS survey ≤18 months after diagnosis, and survived for this study period. Experience of care was assessed by patient-provided scores for physicians, doctor communication, care coordination, and other aspects of care. Multivariable logistic regression models assessed associations of receipt of external beam RT with care experience and patient sociodemographic and clinical characteristics., Results: The study population included 824 women; 655 (79%) received RT. Women with higher experience of care scores for their personal doctor were significantly more likely to have received any RT (odds ratio [OR], 1.18; P = .033). Nonsignificant trends were observed for associations of increased RT with higher CAHPS measures of doctor communications (OR, 1.15; P = .055) and care coordination (OR, 1.24; P = .051). In contrast, women reporting higher scores for Part D prescription drug plans were significantly less likely to have received RT (OR, 0.78; P = .030)., Conclusions: Patient experience of care was significantly associated with receipt of RT after lumpectomy among women with breast cancer. Health care organization leaders may want to consider incorporating experience of care into quality improvement initiatives and other activities that aim to improve patient decision-making, care, and outcomes., Competing Interests: Disclosures Michael T. Halpern received support for attending a meeting from the American Association for Cancer Research and served as the Chair of the American Public Health Association's Cancer Forum. David Kozono received consulting fees from Genentech/Roche and payment/honorarium from RefleXion and serves as Co-Chair of the Alliance for Clinical Trials in Oncology's Immuno-Oncology Committee. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, National Cancer Institute. No other disclosures were reported., (Published by Elsevier Inc.)

Eating disorders (ED) and weight stigma pose significant healthcare challenges. Patients at higher weights, like some with atypical anorexia (AAN), may face increased challenges due to weight stigma. This study analyzed patients' lived experiences with weight stigma in healthcare. Thirty-eight adult patients with AAN completed in-depth, semi-structured interviews regarding healthcare experiences. Guided by narrative inquiry approaches, transcripts were thematically coded. Across the illness trajectory (ED development, pre-treatment, treatment, post-treatment), patients reported that weight stigma in healthcare contributed to initiation and persistence of ED behaviors. Themes included "providers pathologizing patient weight," which patients reported triggered ED behaviors and relapse, "provider minimization and denial" of patients' EDs, which contributed to delays in screening and care, and "overt forms of weight discrimination," leading to healthcare avoidance. Participants reported that weight stigma prolonged ED behaviors, delayed care, created suboptimal treatment environments, deterred help-seeking, and lowered healthcare utilization. This suggests that many providers (pediatricians, primary care providers, ED treatment specialists, other healthcare specialists) may inadvertently reinforce patients' EDs. Increasing training, screening for EDs across the weight spectrum, and targeting health behavior promotion rather than universal weight loss, could enhance quality of care and improve healthcare engagement for patients with EDs, particularly those at higher weights., Competing Interests: Declaration of Competing Interest None for any author., (Copyright © 2023 Elsevier Ltd. All rights reserved.)