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César Lizán Tudela,1 Irene Cuevas Sáiz,2 Lorenzo Abad de Velasco,2 Laura Gregori Navarro,1 Marta Comellas,3 Francisco Javier Pérez-Sádaba,3 Luis Lizán3,4 1Department of Paediatrics, Obstetrics and Gynaecology, Hospital Clínico Universitario, Valencia, 46010, Spain; 2Department of Paediatrics, Obstetrics and Gynaecology, Consorcio Hospital General Universitario de Valencia, Valencia, 46014, Spain; 3Outcomes 10 SLU, Castellón de la Plana, Spain; 4Department of Medicine, Jaume I University, Castellón de la Plana, SpainCorrespondence: César Lizán Tudela, Department of Paediatrics, Obstetrics and Gynaecology, Hospital Clínico Universitario, Avda. Blasco Ibañez, 17, Valencia, 46010, Spain, Tel +34 654662524, Email cesarlizan@yahoo.esPurpose: To determine the perspective of patients and professionals in Assisted Reproduction Units (ARU) on the importance of assisted reproductive techniques (ART) compared to other elective procedures, to highlight the relevance of ART as an elective procedure and the impact of delayed interventions on patients.Design, Patients and Methods: An observational, descriptive, cross-sectional, online survey-based study was conducted in infertility patients and partners (n=98) and ARU healthcare professionals (n=83). The survey included a best-worst scaling (BWS) experiment and an ad-hoc questionnaire to analyze the pandemic impact on ART management and infertility patients in Spain. In the BWS, each respondent established priorities choosing which patient profile should be rated as the highest and lowest priority profile on a waiting list. To understand the importance that they give to assisted reproduction compared to other procedures, three very common elective procedures involving different patient profiles were selected: cataract surgery, knee arthroplasty, and varicose vein surgery. For each procedure, three hypothetical patient profiles corresponding to three different degrees of severity on a waiting list were designed.Results: Patients attributed greater importance to ART profiles (BWS score: patients 0.14 vs professionals − 0.05; p< 0.01) whereas professionals prioritized cataract surgery (patients 0.06 vs professionals 0.23; p< 0.01). Concerning the profile severity, more severe profiles were prioritized in all procedures by both groups. Patients’ and professionals’ perspectives on the impact of the pandemic were similar, with exceptions: information received for resuming ART; health care provision in crisis situations; and reduction of parenting options. The pandemic affected patients’ ability to conceive a child (70.4% of those surveyed), their psychological well-being (75.5%), and partner, social, and work relationships (69.4%).Conclusion: Preference studies involving patients and professionals can provide important information to define framework criteria for the management of waiting lists for elective procedures, and to prioritize interventions during pandemic periods. The pandemic impact on infertility patients highlights the relevance of developing measures and strategies to cope with similar future situations in the most appropriate way.Keywords: assisted reproduction, coronavirus disease, fertility, patients’ perspective, best-worst scaling

Ángel Luis Guerrero-Peral,1 Jesús Porta-Etessam,2 Jaime Rodríguez-Vico,3 Mercedes Núñez,4 Antonio Ciudad,4 Silvia Díaz-Cerezo,4 Carla Garí-Peris,5 Francisco Javier Pérez-Sádaba,5 Luis Lizán,5 Sonia Santos-Lasaosa6 1Headache Unit, Neurology Department, Hospital Clínico Universitario de Valladolid, Valladolid, Spain; 2Neurology Department, Hospital Clínico San Carlos, Madrid, Spain; 3Neurology Department, Fundación Jimenez Diaz, Madrid, Spain; 4Medical Department, Eli Lilly, Madrid, Spain; 5Outcomes’ 10, Castellón, Spain; 6Neurology Department, Hospital Clínico Universitario Lozano Blesa, Zaragoza, SpainCorrespondence: Mercedes Núñez, Eli Lilly, Av. de la Industria, 30, Alcobendas, Madrid, 28108, Spain, Tel +34 647447827, Email nunez_mercedes@lilly.comPurpose: We aimed to validate the Spanish version of the Decisional Conflict Scale (DCS) and analyze its psychometric properties in people with migraine.Patients and Methods: The DCS validation comprised two phases. First, a translation and cross-cultural adaptation following the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Good Practices: 1-preparation, 2-independent forward translation, 3-reconciliation, 4-back-translation, 5-harmonization, 6-clinical review, and 7-content validation in a group of migraine patients. Second, the analysis of the psychometric properties. The reliability or internal consistency of the DCS scale and subscales was assessed using Cronbach’s α value. The item-subscale correlation was also evaluated. A floor and ceiling effects for DCS score was considered when at least 15% of respondents obtained DCS > 90 (ceiling) or < 10 (floor). The construct validity was studied through the correlation between the DCS subscales and by the correlation between the DCS and other questionnaires (Decision Self-Efficacy Scale [DSES] and 9-item Shared Decision-Making [SDM-Q-9]). Spearman’s coefficients were estimated for the correlations.Results: The cross-cultural adaptation was conducted on 17 patients who completed the questionnaire in a mean of 2.4 ± 1.1 minutes. Generally, more than 75% of them considered that DCS items were adequate, easy to understand, and relevant. The psychometric properties were evaluated in a sample of n=128 patients. Accordingly, the internal consistency of DCS was high, with a Cronbach’s α of 0.97 for the scale and between 0.87 to 0.96 for subscales. Also, a slight floor effect was observed, with 24.2% of patients having DCS scores < 10. The correlation between subscales exceeded Spearman’s coefficient of 0.7. Whereas the correlation between the DCS and the other questionnaires was generally moderate (Spearman’s coefficient > 0.4).Conclusion: The Spanish version (Spain) of the DCS has very acceptable psychometric properties (reliability and construct validity) and good potential for assessing decisional conflicts among migraine patients.Keywords: migraine, decision-making, decisional conflict scale, psychometric properties, adaptation, Spanish

Background: The European University Hospitals Alliance (EUHA) recognises the need to move from the classical approach of measuring key performance indicators (KPIs) to an anticipative approach based on predictable indicators to take decisions (Key Decision Indicators, KDIs). It might help managers to anticipate poor results before they occur to prevent or correct them early., Objective: This paper aims to identify potential KDIs and to prioritize those most relevant for high complexity hospitals., Methods: A narrative review was performed to identify KPIs with the potential to become KDIs. Then, two surveys were conducted with EUHA hospital managers (n = 51) to assess potential KDIs according to their relevance for decision-making (Value) and their availability and effort required to be predicted (Feasibility). Potential KDIs are prioritized for testing as predictable indicators and developing in the short term if they were classified as highly Value and Feasible., Results: The narrative review identified 45 potential KDIs out of 153 indicators and 11 were prioritized. Of nine EUHA hospitals, 25 members from seven answered, prioritizing KDIs related to the emergency department (ED), hospitalisation and surgical processes (n = 8), infrastructure and resources (n = 2) and health outcomes and quality (n = 1). The highest scores in this group were for those related to ED. The results were homogeneous among the different hospitals., Conclusions: Potential KDIs related to care processes and hospital patient flow was the most prioritized ones to test as being predictable. KDIs represent a new approach to decision-making, whose potential to be predicted could impact the planning and management of hospital resources and, therefore, healthcare quality., (© 2023 John Wiley & Sons Ltd.)

Introduction: Migraine symptoms vary significantly between patients and within the same patient. Currently, an increasing number of therapeutic options are available for symptomatic and preventive treatment. Guidelines encourage physicians to use shared decision-making (SDM) in their practice, listening to patients' treatment preferences in order to select the most suitable and effective therapy. Although training for healthcare professionals could increase their awareness of SDM, results concerning its effectiveness are inconclusive. This study aimed to analyze the impact of a training activity to promote SDM in the context of migraine care. This was addressed by evaluating the impact on patients' decisional conflict (main objective), patient-physician relationship, neurologists' perceptions of the training and patient's perception of SDM., Methods: A multicenter observational study was conducted in four highly specialized headache units. The participating neurologists received SDM training targeting people with migraine in clinical practice to provide techniques and tools to optimize physician-patient interactions and encourage patient involvement in SDM. The study was set up in three consecutive phases: control phase, in which neurologists were blind to the training activity and performed the consultation with the control group under routine clinical practice; training phase, when the same neurologists participated in the SDM training; and SDM phase, in which these neurologists performed the consultation with the intervention group after the training. Patients in both groups with a change of treatment assessment during the visit completed the Decisional conflict scale (DCS) after the consultation to measure the patient's decisional conflict. Also, patients answered the patient-doctor relationship questionnaire (CREM-P) and the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). The mean ± SD scores obtained from the study questionnaires were calculated for both groups and compared to determine whether there were significant differences (p < 0.05)., Results: A total of 180 migraine patients (86.7% female, mean age of 38.5 ± 12.3 years) were included, of which 128 required a migraine treatment change assessment during the consultation (control group, n = 68; intervention group, n = 60). A low decisional conflict was found without significant differences between the intervention (25.6 ± 23.4) and control group (22.1 ± 17.9; p = 0.5597). No significant differences in the CREM-P and SDM-Q-9 scores were observed between groups. Physicians were satisfied with the training and showed greater agreement with the clarity, quality and selection of the contents. Moreover, physicians felt confident communicating with patients after the training, and they applied the techniques and SDM strategies learned., Conclusion: SDM is a model currently being actively used in clinical practice for headache consultation, with high patient involvement in the process. This SDM training, while useful from the physician's perspective, may be more effective at other levels of care where there is still room for optimization of patient involvement in decision-making., (© 2023. The Author(s).)

Wilson disease (WD) is a rare copper metabolism disorder caused by mutations in the ATP7B gene. It usually affects young individuals and can produce hepatic and/or neurological involvement, potentially affecting health-related quality of life (HRQoL). We assessed HRQoL in a cohort of Spanish patients with WD and evaluated disease impact on several domains of patients' lives, treatment adherence, drug preference and satisfaction, and healthcare resource utilisation in a cross-sectional, retrospective, multicentric, observational study. A total of 102 patients were included: 81.4% presented isolated liver involvement (group H) and 18.6% presented neurological or mixed involvement (group EH). Up to 30% of patients reported a deteriorated emotional status with anxiety and depression, which was greater in the EH subgroup; the use of neuropsychiatric drugs was high. Over 70% of the patients were satisfied with their current treatment but complained about taking too many pills, stating they would consider switching to another more patient-friendly treatment if available. The Simplified Medication Adherence Questionnaire revealed only 22.5% of patients were fully adherent to therapy, suggesting that alternative therapies are needed. This real-world study, even though is highly enriched with hepatic patients and mild disease, shows that WD impacts patients' HRQoL, especially in the emotional domain.

Objectives: Describe healthcare resource use and costs per hospitalized coronavirus disease-2019 (COVID-19) patient during the three main outbreak waves., Methods: A retrospective observational study. COVID-19 patient data were collected from a dataset from 17 hospitals in the HM Hospitals Group. Mean total costs per hospitalized patient and per day were estimated in each wave, as defined by the Spanish National Health System perspective. In addition, costs were estimated for both patients admitted and those not admitted to the intensive care unit (ICU) and were stratified by age groups., Results: A total of 3756 COVID-19 patients were included: 2279 (60.7%) for the first, 740 (19.7%) for the second, and 737 (19.6%) for the and third wave. Most (around 90%) did not require ICU treatment. For those patients, mean ± SD cost per patient ranged from €10 196.1 ± €7237.2 (mean length of stay [LOS] ± SD: 9.7 ± 6.2 days) for the second wave to €9364.5 ± €6321.1 for the third wave (mean 9.0 ± 5.7 days). Mean costs were around €1000 per day for all the waves. For patients admitted to the ICU, cost per patient ranged from €81 332.5 ± €63 725.8 (mean 31.0 ± 26.3 days) for the second wave to €36 952.1 ± €24 809.2 (mean 15.7 ± 8.2 days) for the third wave. Mean costs per day were around €3000 for all the waves. When estimated by age, mean LOS and costs were greater in patients over 80 when not admitted to the ICU and for patients aged 60 to 79 when admitted to the ICU., Conclusions: LOS was longer for patients admitted to the ICU (especially in the first two waves) and for older patients in our study cohort; these populations incurred the highest hospitalization costs., Competing Interests: G.D. and J.L.L-B. declare that are employees of Sanofi and may hold shares and/or stock options in the company. C.G., F.J.P-S. and S.A. declare that they work for an independent research entity and that they have received fees for their contribution to project development and the writing of the manuscript., (Copyright: © 2023 Drago et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background & Aims: COVID-19 patients present a high hospitalization rate with a high mortality risk for those requiring intensive care. When these patients have other comorbid conditions and older age, the risk for severe disease and poor outcomes after ICU admission are increased. The present work aims to describe the preliminary results of the ongoing NUTRICOVID study about the nutritional and functional status and the quality of life of adult COVID-19 survivors after ICU discharge, emphasizing the in-hospital and discharge situation of this population., Methods: A multicenter, ambispective, observational cohort study was conducted in 16 public hospitals of the Community of Madrid with COVID-19 survivors who were admitted to the ICU during the first outbreak. Preliminary results of this study include data retrospectively collected. Malnutrition and sarcopenia were screened at discharge using MUST and SARC-F; the use of healthcare resources was measured as the length of hospital stay and requirement of respiratory support and tracheostomy during hospitalization; other study variables were the need for medical nutrition therapy (MNT); and patients' functional status (Barthel index) and health-related quality of life (EQ-5D-5L)., Results: A total of 176 patients were included in this preliminary analysis. Most patients were male and older than 60 years, who suffered an average (SD) weight loss of 16.6% (8.3%) during the hospital stay, with a median length of stay of 53 (27-89.5) days and a median ICU stay of 24.5 (11-43.5) days. At discharge, 83.5% and 86.9% of the patients were at risk of malnutrition and sarcopenia, respectively, but only 38% were prescribed MNT. In addition, more than 70% of patients had significant impairment of their mobility and to conduct their usual activities at hospital discharge., Conclusions: This preliminary analysis evidences the high nutritional and functional impairment of COVID-19 survivors at hospital discharge and highlights the need for guidelines and systematic protocols, together with appropriate rehabilitation programs, to optimize the nutritional management of these patients after discharge., Competing Interests: Conflict of interest Dr. C.C. reports personal fees from Takeda, personal fees from Fresenius Kabi, personal fees from Baxter, personal fees from Nutricia, personal fees from Persan Farma, outside the submitted work. The rest of the authors declare no conflict of interest related to this article. The authors declare that the funding provider was not involved in analyzing and dissemination of the study results, and that no conflict of interest exists with this organization., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)