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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

Immunization is the most effective strategy for the prevention of invasive meningococcal disease caused by Neisseria meningitidis serogroup B (MenB); however, parents need to weigh the risk-benefit and financial impact of immunizing their children against MenB in the absence of a national immunization program (NIP). This study aimed to explore societal preferences (of parents and pediatricians) regarding the attributes of a MenB vaccine in Spain.A discrete choice experiment (DCE) based on cross-sectional surveys was carried out to determine preferences. A literature review and scientific committee determined the six attributes related to the MenB vaccine included in the DCE: vaccination age, cost, duration, percentage of protection, adverse events probability, and expert/authority recommendation. Data were analyzed using a mixed logit model. Relative importance (RI) of attributes was calculated and compared between parents and pediatricians.A total of 278 parents [55.8% female, mean age 40.4 (standard deviation, SD 7.3) years] and 200 pediatricians [73.0% female, mean age 45.8 (SD 12.9) years] answered the DCE. For parents, the highest RI was attributed to vaccine cost, expert/authority recommendation, and percentage of protection (26.4%, 26.1%, and 22.9%, respectively), while for pediatricians the highest RI was assigned to percentage of protection, expert/authority recommendation, and vaccination age (27.2%, 23.7%, and 22.6%, respectively). Significant differences between parents and pediatricians were found in the RI assigned to all attributes (p 0.001), except for vaccine recommendation.In the decision regarding MenB vaccination, cost was a driver in parental decision-making but had a low RI for pediatricians and, conversely, vaccination age was highly valued by pediatricians but was the attribute with least importance for parents. Despite these differences, expert/authority recommendation and percentage of protection were essential criteria for both groups. These results provide relevant information about MenB vaccination, highlighting the importance of considering societal preferences for NIP inclusion.

Introduction: Frailty is a major health concern associated with aging and with an increased vulnerability to adverse outcomes. The rising health care costs associated with fragile patients represents a threat to National Healthcare Systems due to the limited resources. One approach to this challenge is to consider the development of artificial intelligence (AI) based tools aimed at the redesigning care for frail older people, stratified by Rockwood grade [1]. This study aimed to the development of the SmartChronic platform that integrates a set of data-driven tools to both proactively identify frail older patients at risk of non-programmed hospital readmission and predict hospital clinical pathways for optimal use of limited healthcare resources. Methodology: Retrospective data of the present study came from the electronic healthcare record of La Fe Health Department (Valencia, Spain) that has deployed a Real-World Data analysis platform based on SAS® Software Analytics infrastructure, effectively organized reaching stage 6 in the eight-stage (0-7) EMRAM maturity model. Currently, the data lake layer includes structured and semi-structured records updated daily, coming from several information systems involving clinical activity, and is composed by the aggregation of 22 DataMart comprising 750 million rows, 84 tables and 4.064 columns. Gradient Boosted Trees has been used to develop the 30-day hospital readmission risk model and logistic regression for the development of the pathway prediction model. The study was approved in 2020 by the Ethical Clinical Research Committee of La FE Hospital (Reference number 2020-138-1).Results: The 30-day hospital readmission risk model shows the value as a risk percentage, with reasonable value of 0.665 for the area under the ROC curve. Regarding the pathway prediction model, the algorithm implemented can be applied iteratively at evolutive states of the clinical pathway. These states are determined by a sequence of transition events, that once validated, establish the starting point of a new step of processing. This way, we have developed a novel framework for modelling patient flow through various hospital services. The Accuracy value of the model is 0.40. Both models are integrated into a global SmartChronic platform.Conclusions: A moderately discriminative real-time 30-day readmission and patient pathway predictive models can aid the development, implementation, description and evaluation of integrated care programs for frailty patients with chronic diseases. The successful development of these tools required the establishment of an interdisciplinary collaboration among academia, industry and healthcare providers.Implications for applicability: This technology allows studying big database of patients, contributing to the development of the concept of personalized medicine and to optimize integrated care. Platforms such as SmartChronic would also improve the decision-making of health policy makers. This study has been carried out in a single hospital, it would have to be analyzed if the results can be ex-trapolated to other hospitals.Funding: This research was funded by the Valencian Innovation Agency, Generalitat Valenciana (INNEST/2020/47). References: 1 Rockwood K, Mitnitski A. Frailty in relation to the accumulation of deficits. The Journals of Gerontology, Series A: Biological Sciences and Medical Sciences. 2007;62(7):722–7. DOI: https://doi.org/10.1093/gerona/62.7.722

Aim: To synthesize information available in the literature on patients' preferences and satisfaction with osteoporosis treatment and their unmet needs on the treatment decision-making process. Materials & methods: Systematic literature review consulting international database and grey literature of articles published between January 1, 2009 and January 1, 2019. Results: Nineteen publications were reviewed, 79% of them focused on evaluating the importance that patients attached to the mode and frequency of administration, adverse events and treatment efficacy. 21% of them provided information about treatment satisfaction and 26% regarding unmet needs on treatment-decision making process. Conclusion: Aligning treatment with patients' preferences, promoting physician-patient communication and identifying patients' concerns with treatment may contribute to improve treatment satisfaction and adherence and ultimately achieve the treatment goal.

Resumen Objetivo Revisar la bibliografia sobre instrumentos especificos de medida de los resultados percibidos por los pacientes (patient reported outcomes, PRO) validados y utilizados en poblacion espanola con psoriasis, valorar sus propiedades psicometricas y describir los resultados de su aplicacion practica. Materiales y metodos Revision sistematica de la literatura cientifica en bases de datos internacionales (PubMed/Medline) y nacionales (Medes, Ibecs) referente a estudios que validen o implementen instrumentos especificos de valoracion de PRO en poblacion espanola con psoriasis. Se completo la busqueda en bases de datos especificas de instrumentos para medir PRO (BiblioPRO, PROQOLID). Se incluyeron los estudios publicados en ingles o espanol hasta el 01/09/2017. Adicionalmente, se revisaron las listas de referencias bibliograficas de las publicaciones clave identificadas. La valoracion de la calidad metodologica de los cuestionarios se efectuo con base en sus propiedades psicometricas (constructo, adaptacion transcultural, fiabilidad, validez, factibilidad y sensibilidad al cambio). Resultados Se seleccionaron 18 publicaciones. Seis articulos describieron la validacion al espanol de 5 instrumentos de PRO: 4 cuestionarios de calidad de vida relacionada con la salud (CVRS) especificos de psoriasis/enfermedades dermatologicas y un cuestionario especifico de satisfaccion con el tratamiento. La valoracion psicometrica muestra variabilidad en los criterios alcanzados por cada instrumento; el cuestionario de CVRS PSO-LIFE resulto el mas completo. Los 12 articulos restantes correspondian a estudios observacionales que empleaban los instrumentos validados. Su utilizacion muestra un elevado impacto de la psoriasis en la CVRS, especialmente en pacientes jovenes, de genero femenino y con enfermedad grave. Conclusiones Se han identificado 5 instrumentos especificos validados en Espana para valorar los PRO en pacientes con psoriasis. Dada la variedad de sus propiedades psicometricas, resulta esencial conocer las fortalezas y debilidades de cada uno para seleccionar el instrumento apropiado para cada situacion. El empleo de estos cuestionarios pone de manifiesto el elevado impacto de la enfermedad en la CVRS de los pacientes. La evaluacion de los PRO en el paciente con psoriasis complementa los resultados clinicos tradicionales y puede contribuir a un manejo mas optimo de la enfermedad.

Objectives To review the literature on validated tools for measuring patient-reported outcomes (PROs) in psoriasis in Spain. To evaluate the psychometric properties of the tools and describe the results of their practical application. Material and methods Systematic review of studies validating or using instruments for assessing PROs in Spanish patients with psoriasis. Literature searches were performed in international (PubMed/Medline) and Spanish (Medes, Ibecs) databases. We also searched databases of instruments for measuring PROs (BiblioPRO, PROQOLID). The review included studies published in English or Spanish up to January 9, 2017. We also checked the reference lists of the key publications identified. The quality of the questionnaires was evaluated based on their psychometric properties (construct, transcultural adaptation, reliability, validity, feasibility, and sensitivity to change). Results Eighteen publications were included. Six articles described the validation of Spanish versions of 5 PROs tools: 4 health-related quality of life (HRQoL) questionnaires specific to psoriasis and dermatologic diseases and 1 questionnaire specific to satisfaction with treatment. Our assessment of the HRQoL tools’ psychometric properties showed that the PSO-LIFE questionnaire received the highest scores, although specific properties varied from instrument to instrument. The 12 remaining articles were observational studies that used the validated instruments. In use, these tools detected the high impact of psoriasis on HRQoL, especially in young female patients with severe disease. Conclusions We identified 5 specific instruments validated in Spain for scoring PROs in patients with psoriasis. The tools’ psychometric properties vary, and it is essential to understand their strengths and weaknesses when selecting the right one for each situation. In use, these questionnaires are able to detect the high impact of psoriasis on patients’ HRQoL. PROs provide useful information to complement routine clinical findings in psoriasis and may contribute to improving disease management.

Summary The study aimed to achieve expert consensus to optimize secondary fracture prevention in Spain. Relevant gaps in current patient management were identified. However, some aspects were considered difficult to apply. Future efforts should focus on those items with greatest divergences between importance and feasibility. Purpose To establish a Spanish multidisciplinary expert consensus on secondary fracture prevention. Methods A two-round Delphi consensus was conducted, guided by a Scientific Committee. The 43-item study questionnaire was designed from a literature review and a subsequent multidisciplinary expert group (n = 12) discussion. The first-round questionnaire, using a 7-point Likert scale, assessed the experts’ opinion of the current situation, their wish for items to happen, and their prognosis that items would be implemented within 5 years. Items for which consensus was not achieved were included in the second round. Consensus was defined as ≥ 75% agreement or ≥ 75% disagreement. A total of 102 experts from 14 scientific societies were invited to participate. Results A total of 75 (response rate 73.5%) and 69 (92.0%) experts answered the first and second Delphi rounds, respectively. Participants mean age was 51.8 years [standard deviation (SD): 10.1 years]; being 24.0% rheumatologists, 21.3% primary care physicians, 14.7% geriatricians, 8.0% internal medicine specialists, 8.0% rehabilitation physicians, and 8.0% gynecologists. Consensus was achieved for 79.1% of items (wish, 100%; prognosis, 58.1%). Effective secondary prevention strategies identified as requiring improvement included: clinical report standardization, effective hospital primary care communication (telephone/mail and case managers), health-related quality of life (HRQoL) questionnaires use, and treatment compliance monitoring (prognosis agreement 33.3%, 47.8%, 18.8%, and 55.1%, respectively). Conclusion A consensus was reached by health professionals in their wish to implement strategies to optimize secondary fracture prevention; however, they considered some difficult to apply. Efforts should focus on those items with currently low application and those with greatest divergence between wish and prognosis.

Simple Summary The additional value of patient-reported symptom monitoring in routine cancer is still under discussion. With this in mind, we have reviewed recent evidence on the benefits of this strategy. The evidence examined illustrates that bringing systematic patient feedback into the oncology consultation provides objective advantages over usual care, such as better symptom control, early detection of tumor recurrence, and extended chemotherapy use. Such care improvements ultimately entail an outstanding survival benefit for advanced cancer patients, an increase in their global quality of life, and eventually, medical cost savings. Monitoring patient-reported symptoms might also have other implications in clinical practice, such as promoting patient disease awareness or enhancing patient–physician communication and relationships. Notwithstanding these advantages, there are still logistical barriers that prevent its widespread implementation—especially in the electronic modality. In addition, the real-world effectiveness and the cost-effectiveness of this strategy are yet to be proven in different settings. Abstract Background: To describe the benefit of patient-reported symptom monitoring on clinical, other patient-reported, and economic outcomes. Methods: We conducted a systematic literature review using Medline/PubMed, limited to original articles published between 2011 and 2021 in English and Spanish, and focused on the benefit of patient-reported symptom monitoring on cancer patients. Results: We identified 16 reports that deal with the benefit of patient-reported symptom monitoring (collected mostly electronically) on different outcomes. Five studies showed that patient-reported symptom surveillance led to significantly improved survival compared with usual care—mainly through better symptom control, early detection of tumor recurrence, and extended chemotherapy use. Additionally, three evaluations demonstrated an improvement in Health-Related Quality of Life (HRQoL) associated with this monitoring strategy, specifically by reducing symptom severity. Additionally, six studies observed that this monitoring approach prevented unplanned emergency room visits and hospital readmissions, leading to a substantial decrease in healthcare usage. Conclusions: There is consistent evidence across the studies that patient-reported symptom monitoring might entail a substantial survival benefit for cancer patients, better HRQoL, and a considerable decrease in healthcare usage. Nonetheless, more studies should be conducted to demonstrate their effectiveness in addition to their cost-effectiveness in clinical practice.

This paper presents the possibility of using Gallium Nitride (GaN) high-electron-mobility transistors (HEMTs) instead of the conventional silicon metal oxide semiconductor field effect transistor (MOSFET) to implement a high-frequency intermediate bus converter (IBC) as part of a typical distributed power architecture used in a space power application. The results show that processing the power at greater frequencies is possible with a reduction in mass and without impacting the system efficiency. The proposed solution was experimentally validated by the implementation of a 1 MHz zero-voltage and zero-current switching (ZVZCS) current-fed half-bridge converter with synchronous rectification compared with the same converter using silicon as the standard technology on power switches and working at 100 kHz. In conclusion, the replacement of silicon (Si) transistors by GaN HEMTs is feasible, and GaN HEMTs are promising next-generation devices in the power electronics field and can coexist with silicon semiconductors, mainly in some radiation-intensive environments, such as power space converters. The best physical properties of GaN HEMTs, such as inherent radiation hardness, low on resistance and parasitic capacitances, allow them to switch at higher frequencies with high efficiency achieving higher power density. We present an optimized design procedure to guaranty the zero-voltage switching condition that enables the power density to be increased without a penalization of the efficiency.

Introduction To determine patient and rheumatologist preferences for rheumatoid arthritis (RA) treatment attributes in Spain and to evaluate their attitude towards shared decision-making (SDM). Methods Observational, descriptive, exploratory and cross-sectional study based on a discrete choice experiment (DCE). To identify the attributes and their levels, a literature review and two focus groups (patients [P] = 5; rheumatologists [R] = 4) were undertaken. Seven attributes with 2–4 levels were presented in eight scenarios. Attribute utility and relative importance (RI) were assessed using a conditional logit model. Patient preferences for SDM were assessed using an ad hoc questionnaire. Results Ninety rheumatologists [52.2% women; mean years of experience 18.1 (SD: 9.0); seeing an average of 24.4 RA patients/week (SD: 15.3)] and 137 RA patients [mean age: 47.5 years (SD: 10.7); 84.0% women; mean time since diagnosis of RA: 14.2 years (SD: 11.8) and time in treatment: 13.2 years (SD: 11.2), mean HAQ score 1.2 (SD: 0.7)] participated in the study. In terms of RI, rheumatologists and RA patients viewed: time with optimal QoL: R: 23.41%/P: 35.05%; substantial symptom improvement: R: 13.15%/P: 3.62%; time to onset of treatment action: R: 16.24%/P: 13.56%; severe adverse events: R: 10.89%/P: 11.20%; mild adverse events: R: 4.16%/P: 0.91%; mode of administration: R: 25.23%/P: 25.00%; and added cost: R: 6.93%/P: 10.66%. Nearly 73% of RA patients were involved in treatment decision-making to a greater or lesser extent; however, 27.4% did not participate at all. Conclusion Both for rheumatologists and patients, the top three decision-making drivers are time with optimal quality, treatment mode of administration and time to onset of action, although in different ranking order. Patients were willing to be more involved in the treatment decision-making process. Electronic supplementary material The online version of this article (10.1007/s12325-020-01258-5) contains supplementary material, which is available to authorized users.

Introduction Recommendations on chronic diseases management emphasise the need to consider patient perspectives and shared decision-making. Discrepancies between patients and physicians’ perspectives on treatment objectives, disease activity, preferences and treatment have been described for immune-mediate inflammatory diseases. These differences could result on patient dissatisfaction and negatively affect outcomes. Objective To describe the degree of patient-physician discrepancy in three chronic immune-mediated inflammatory diseases (rheumatoid arthritis [RA], psoriatic arthritis [PsA] and psoriasis [Ps]), identifying the main areas of discrepancy and possible predictor factors. Methods Qualitative systematic review of the available literature on patient and physician discrepancies in the management of RA, PsA and Ps. The search was performed in international (Medline/PubMed, Cochrane Library, ISI-WOK) and Spanish electronic databases (MEDES, IBECS), including papers published from April 1, 2008 to April 1, 2018, in English or Spanish, and conducted in European or North American populations. Study quality was assessed by the Oxford Centre for Evidence-Based Medicine criteria. Results A total of 21 studies were included (13 RA; 3 PsA; 4 Ps; 1 RA, Ps, and Axial Spondyloarthritis). A significant and heterogeneous degree of discrepancy between patients and physicians was found, regarding disease activity, treatment, clinical expectations, remission concept, and patient-physician relationship. In RA and PsA, studies were mainly focused on the evaluation of disease activity, which is perceived as higher from the patient’s than the physician’s perspective, with the discrepancy determined by factors such as patient’s perception of pain and fatigue. In Ps, studies were focused on treatment satisfaction and patient-physician relationship, showing a lower degree of discrepancy in the satisfaction regarding these aspects. Conclusions There is a significant degree of patient-physician discrepancy regarding the management of RA, PA, and Ps, what can have a major impact on shared decision-making. Future research may help to show whether interventions considering discrepancy improve shared decision-making.

Introduction Idiopathic pulmonary fibrosis (IPF) impacts the life of patients and their families, so it is necessary to ascertain their perception in the approach to their disease. Methods Observational study by means of a specific questionnaire that includes socio-demographic and clinical variables, perception of the impact of the disease (5-point Likert scale), preferences regarding the characteristics of the medication (degree of importance/concern 1-10) and satisfaction with treatment (SATMED-Q® scale 0-100). Results 69 individuals participated (age: 66.5 ± 7.6 years; time until diagnosis: 16.5 ± 17.4 months; diagnosis time: 49.6 ± 42.3 months). The majority state that IPF limits them physically (90%) and emotionally (75%). The most highly valued features of the treatment were: slowing down progression of the disease (7.4 ± 2.8), stabilising lung capacity (6.9 ± 2.8) and improving quality of life (6.9 ± 2.8), above stabilising/improving symptoms (6.1 ± 2.8/6.3 ± 2.8) or avoiding hospitalisation (6.6 ± 2.7). The principal factors of concern were suffering gastric disorders (7.1 ± 2.9), photosensitivity (6.6 ± 3.0) or interaction with other drugs (6.0 ± 3.0). Overall satisfaction with the current treatment scored 61.1 points, with the highest scores being for medical follow-up (79.5) and overall opinion of the medicine (74.3). Conclusions A study conducted in Spain on the perspective of IPF patients regarding the disease and its treatment. The results show a high level of awareness in terms of the seriousness of the disease on the part of patients, whose main concern is to slow down its progression. The information provided may help to optimise the management of IPF patients. Introducción La fibrosis pulmonar idiopática (FPI) impacta en la vida del paciente y de sus familiares, por ello, resulta necesario conocer su percepción en el abordaje de su enfermedad. Métodos Estudio observacional mediante un cuestionario específico que recoge: variables sociodemográficas y clínicas, percepción sobre el impacto de la enfermedad (escala Likert 5 puntos), preferencias acerca de las características de la medicación (grado importancia/preocupación 1-10) y satisfacción con el tratamiento (Treatment Satisfaction with Medicines Questionnaire [SATMED-Q®] escala 0-100). Resultados Participaron 69 individuos (edad: 66,5 ± 7,6 años; tiempo hasta diagnóstico: 16,5 ± 17,4 meses; tiempo de diagnóstico: 49,6 ± 42,3 meses). La mayoría indicó que la FPI les limita física (90%) y emocionalmente (75%). Las características más valoradas del tratamiento fueron: condición de enlentecer la progresión (7,4 ± 2,8), estabilizar la capacidad pulmonar (6,9 ± 2,8) y mejorar la calidad de vida (6,9 ± 2,8), por encima de mejorar/estabilizar los síntomas (6,1 ± 2,8/6,3 ± 2,8) o evitar la hospitalización (6,6 ± 2,7). El riesgo de sufrir molestias gástricas (7,1 ± 2,9), fotosensibilidad (6,6 ± 3,0) e interacciones con otros fármacos (6,0 ± 3,0) fueron los principales factores de preocupación. La satisfacción global con el tratamiento actual fue de 61,1 puntos, otorgando las puntuaciones más altas al seguimiento médico (79,5) y la opinión general sobre la medicación (74,3). Conclusiones Estudio realizado en España que describe la perspectiva del paciente con FPI con respecto a la enfermedad y su tratamiento. Los resultados muestran un elevado nivel de concienciación acerca de la gravedad de la enfermedad por parte de los pacientes, cuyo principal interés es enlentecer su progresión. La información proporcionada puede contribuir a optimizar el manejo del paciente con FPI.

Objective: To compare the cost consequence of biologic drugs for moderate-to-severe psoriasis from the perspective of the Spanish National Health System.Methods: We built a decision tree with a two-year time horizon. Efficacy data for biologics (etanercept, infliximab, adalimumab, ustekinumab and secukinumab) were drawn from published meta-analyses: PASI75 for the induction phase and PASI90 for the rest of follow-up. Patients with PASI

espanolObjetivos: Alcanzar un consenso sobre los circuitos de atencion medica de la paciente con osteoporosis postmenopausica (OPM), incluyendo los circuitos de derivacion y manejo (herramientas de evaluacion y pruebas medicas), identificando perfiles de acuerdo con la opinion de expertos en metabolismo oseo pertenecientes al Sistema de Salud Espanol. Material y metodos: Se empleo la tecnica Delphi con dos rondas de consulta sucesivas. Participaron 38 expertos en el manejo de OPM pertenecientes a 14 sociedades cientificas. La revision de la literatura y la opinion del comite cientifico nutrieron el cuestionario. Los expertos expresaron su "deseo" (1=rechazo total; 9=deseo mas fuerte) y "pronostico" (1=no ocurrira en absoluto; 9=ocurrira con maxima probabilidad) acerca de las cuestiones planteadas. Se alcanzo consenso cuando el 75% o mas de los participantes puntuaron 1-3 (desacuerdo) o 7-9 (acuerdo). Adicionalmente, los expertos se dividieron en 3 grupos de discusion para complementar la informacion segun los perfiles de pacientes previamente hallados en el metodo Delphi. Resultados: Se alcanzo consenso en el 75% de las preguntas. Los expertos establecieron tres perfiles de pacientes con OPM: sin fractura, con fractura vertebral y con fractura no vertebral, asi como los recursos diagnosticos y terapeuticos que conviene emplear en estas pacientes. La paciente sin fractura deberia ser manejada por Atencion Primaria o Reumatologia y se utilizaran escalas para valorar el riesgo de fractura en fases tempranas de la enfermedad. La paciente con fractura vertebral cronica deberia referirse a Reumatologia y Rehabilitacion, y se derivara a Reumatologia; mientras que la paciente con fractura vertebral aguda deberia ser tratada por Cirugia Ortopedica, y asi es como posiblemente ocurrira. El diagnostico de la paciente con fractura vertebral estara basado principalmente en la radiografia. Para la evaluacion de la progresion se deberian utilizar cuestionarios sobre la capacidad funcional y escalas del dolor. Sin embargo, no se utilizaran en la practica habitual debido a la falta de tiempo. La paciente con fractura no vertebral deberia ser y sera referida a Cirugia Ortopedica, recomendando realizar 3-4 radiografias anuales para asegurar la consolidacion de la fractura. Conclusiones: Los resultados del metodo Delphi muestran los circuitos de derivacion de la paciente con OPM, que se concentran en Atencion Primaria y Reumatologia, cuando no existe fractura, y Cirugia Ortopedica, en caso de fractura. EnglishObjectives: To reach a consensus on the medical care circuits of patients with postmenopausal osteoporosis (PMO), including derivation and management (assessment tools and medical tests), identifying profiles according to the opinion of bone metabolism experts, from Spain’s Health Service. Material and methods: The Delphi technique was used with two successive consultation rounds, with 38 experts in PMO management belonging to 14 scientific societies taking part in the study. Review of literature and the opinion of the scientific committee rounded out the questionnaire. The experts expressed their "desire" (1=total rejection, 9=stronger desire) and "forecast" (1=will absolutely not occur; 9=will occur with maximum probability) about the issues raised. A consensus was reached when 75% or more of the participants scored 1-3 (disagreement) or 7-9 (agreement). In addition, experts were divided up into 3 discussion groups to complement the information according to patient profiles found previously in the Delphi method. Results: Consensus was reached on 75% of the questions. The experts established three profiles of PMO patients: no fracture, vertebral fracture and non-vertebral fracture, as well as the diagnostic and therapeutic resources recommended for these patients. The patient without a fracture should be managed in Primary Care or Rheumatology and scales will be used to evaluate fracture risk in early stages of the disease. The patient with chronic vertebral fracture should refer to Rheumatology and Rehabilitation, and will be Rheumatology, whereas the patient with acute vertebral fracture should be treated in Orthopedic Surgery, and this is how it will possibly happen. Diagnosis of vertebral fracture patients will be based mainly on x-rays. To assess progress, questionnaires on the functional capacity and pain scales are recommended. However, these will not be used due to the lack of time involved. The patient with non-vertebral fracture should be and will be referred to Orthopedic Surgery, with 3-4 radiographs recommended to ensure fracture consolidation. Conclusions: Delphi method results indicate that referral of PMO patients are concentrated in Primary Rheumatology, when there is no fracture, and Orthopedic Surgery, in the case of fracture.

INTRODUCTION Home enteral nutrition (HEN) is indicated in patients with a functional gastrointestinal tract but who are unable to meet their nutritional requirements with normally consumed foodstuffs. HEN allows patients to remain in their social and family environment, thus reducing complications and costs associated with hospital admission, while increasing health-related quality of life (HRQoL). HRQoL in patients with HEN is mainly evaluated by generic instruments, which are not sensitive enough to identify certain specific patient-related outcomes of HEN. OBJECTIVE To develop a specific instrument to measure HRQoL in patients receiving HEN whose results allow interpretation regardless of the underlying disease and nutritional support administration route: the NutriQoL® questionnaire. MATERIALS AND METHODS The development of the NutriQoL entailed a literature review, focus groups with experts, semistructured interviews with patients, an assessment of face validity and feasibility, and Rasch analysis conducted on data from a sample of 141 patients and 24 caregivers. RESULTS Of the 52 items initially proposed on the basis of the literature review, expert focus group, and semi-structured interviews with patients and caregivers, 17 items were finally selected through the development process to make up the final version of the NutriQoL, as well as a visual analog scale for global HRQoL scoring. The selected items were evaluated as adequate for frequency, importance, and clarity. Furthermore, they have been shown to be independent of the underlying condition and HEN administration route. CONCLUSION A new instrument for measuring the HRQoL of patients with HEN in Spain has been developed, whose results are independent of the underlying condition and administration route. The next step will be the validation of the questionnaire to ensure that the instrument is valid, reliable, and sensitive to health status changes in patients, to be used periodically in usual clinical practice.

Objectives The aim of this study was to develop and assess the effectiveness of a patient decision aid (PDA) to support treatment decision making in Spanish patients with moderate-to-severe rheumatoid arthritis (RA) who fail to achieve the therapeutic goal with the current disease-modifying antirheumatic treatment strategy. Methods The PDA was developed in accordance with the International Patient Decision Aids Standards recommendations. A steering group led the project. Three literature reviews and two focus groups were performed to develop the PDA prototype. To check its comprehensibility, acceptability, and feasibility, alpha-testing was performed using the Decision Support Acceptability Scale (DSAS). Beta-testing was conducted to assess preliminary evidence of PDA efficacy using the Decisional Conflict Scale (DCS) before and after PDA use. Readiness was evaluated using the Preparation for Decision Making Scale (PDMS). Results The PDA included (1) a brief description of RA, (2) treatment information, and (3) a values clarification section. Alpha-testing revealed that most patients considered that the information was presented in a good or excellent way and it could help clarify their values and facilitate treatment decision making. Most rheumatologists agreed that the PDA was easy to understand, to use, and allowed them to reach a shared decision. Beta-testing showed that PDA significantly reduced overall patients’ decisional conflict [33.2 (DE: 21.4) vs 24.6 (23.5); p

Objective: To explore the preferences of Spanish healthcare professionals (haematologists and hospital pharmacists) for the treatment selection of active Chronic Lymphocytic Leukaemia (CLL) patients at first relapse, condition that mainly afflicts older adults. Methods: A discrete choice experiment (DCE) was conducted among haematologists and hospital pharmacists. A literature review and a focus group informed the DCE design. CLL treatment settings were defined by seven attributes: four patient/disease-related attributes (age, functional status, comorbidities, and risk of the disease) and three treatment-related attributes (efficacy [hazard ratio of progression-free survival, HR-PFS], rate of discontinuations due to adverse events and cost). A mixed-logit model was used to determine choice-based preferences. Relative importance (RI) of attributes was calculated and compared between stakeholders. Willingness-to-pay (WTP) was estimated through the DCE. Besides, nine ad-hoc questions were posed, to explore more in depth CLL treatment decision making. Results: A total of 130 participants (72 haematologists and 58 hospital pharmacists) answered the DCE. All attributes were significant predictors of preferences (p < 0.05) in the multinomial model. Higher RI was obtained for treatment-related attributes: the highest rated being 'cost' (23.8%) followed by 'efficacy' (20.9%). Regarding patient-related attributes, the highest RI was obtained for 'age' (18.1%). No significant differences (p> 0.05) in RI between haematologists and pharmacists were found. WTP for the treatment was higher for younger CLL patients. Ad-hoc questions showed that patient age and functional status influence treatment decisions. Conclusions: For healthcare professionals, 'cost' and 'efficacy' (treatment-related attributes) and age (patient-related attribute) are the main factors that determine CLL treatment selection at first relapse. WTP decreases as patient's age increases. (C) 2019 The Authors. Published by Elsevier Ltd.

Introduction The purpose of this study was to explore the main factors explaining the relative weight of the different attributes that determine the value of oncologic treatments from the different perspectives of healthcare policy makers (HCPM), oncologists, patients and the general population in Spain. Methods Structured interviews were conducted to assess: (1) the importance of the attributes on treatment choice when comparing a new cancer drug with a standard cancer treatment; (2) the importance of survival, quality of life (QoL), costs and innovation in cancer; and (3) the most worrying side effects related to cancer drugs. Results A total of 188 individuals participated in the study. For all participants, when choosing treatments, the best rated characteristics were greater efficacy, greater safety, treatment adaptation to patients’ individual requirements and the rapid reincorporation of patients to their daily activities. There were important differences among participants in their opinion about survival, QoL and cost. In general, oncologists, patients, and the general population gave greater value to gains in QoL than healthcare policy makers. Compared to other participants healthcare policy makers gave greater importance to the economic impact related to oncology treatments. Conclusions Gains in QoL, survival, safety, cost and innovation are perceived differently by different groups of stakeholders. It is recommended to consider the perspective of different stakeholders in the assessment of a new cancer drugs to obtain more informed decisions when deciding on the most appropriate treatment to use The authors are extremely grateful to all study participants who contributed with their time to participate in this research. Sponsorship, publication charges, and the open access charge for this study were funded by Eli Lilly & Co, Madrid (Spain). All named authors meet the International Committee of Medical Journal Editors criteria for authorship for this manuscript, take responsibility for the integrity of the work as a whole, and have given final approval to the version to be published.

**Background:** Anti-thrombotic prophylaxis is routinely used in patients undergoing elective total hip or knee replacement (THR or TKR) to reduce the risk of venous thromboembolism (VTE). In Spain, pharmacological prophylaxis is performed with low-molecular-weight heparin, enoxaparin being the most commonly used. Rivaroxaban is an oral antithrombotic drug that has shown superior efficacy and similar safety profile compared to enoxaparin regimens in randomized clinical trials. The aim of the study was to estimate the budget impact of increasing the use of rivaroxaban with respect to enoxaparin in the prophylaxis of VTE in patients undergoing elective THR or TKR. **Methods:** A budget impact analysis was conducted in order to estimate the economic cost from an increase of rivaroxaban use versus enoxaparin by 10%, 20%, and 30% over the 3 years of the time horizon (2015, 2016, and 2017) for the THR and TKR populations. Data related to rate of thromboembolic events, major bleeding events and use of resources (local or general anesthesia and nurse care after surgery) were obtained from the Xarelto® for VTE Prophylaxis After Hip or Knee Arthroplasty (XAMOS) study, an international, non-interventional, observational, open-label study in unselected patients undergoing THR or TKR surgery in routine practice. The study included a total of 17 701 patients from 252 centers in 37 countries, including Spain, Italy, France and United Kingdom, among others. Two cohorts where considered (patients undergoing THR or TKR) with two arms (patients treated with rivaroxaban or enoxaparin). The Spanish patients enrolled in the XAMOS study were 262 with THR and 538 with TKR. Thromboembolic events, major bleeding rates and health care resources were considered from both the international and the Spanish population. Health care resources including pharmacologic prophylaxis, anesthesia and nurse care costs (Euros 2014) were estimated from the Spanish National Healthcare System (NHS) perspective. The annual cost associated with each cohort was estimated based on the mean cost per patient and the estimated distribution of use of rivaroxaban or enoxaparin in the base case scenario and alternative scenario (increase of rivaroxaban use) over the 3 years. A one-way sensitivity analysis was conducted to evaluate the effect that the uncertainty of the input parameters may have on the results of the impact budget. **Results:** The difference in cost per patient undergoing THR or TKR with rivaroxaban versus enoxaparin was -€140.69 including event rates and resource use from the Spanish XAMOS population, and -€110.54 when considering event rates and resource use from the multinational XAMOS population (including but not limited to European [Spain, France, Italy, United Kingdom, Portugal, etc.], American [Canada, Mexico, Colombia, Venezuela, etc.], Asian [China, etc.] and Australian countries). In the analysis per cohort (THR or TKR), the impact of increasing the use of rivaroxaban in the THR cohort, was -€1106, -€2875, and -€5607 for 2015, 2016, and 2017, considering the data from the Spanish XAMOS population, and -€869, -€2259, and -€4405 considering the data from the multinational population. Considering the TKR cohort, the impact was -€2271, -€5904, and -€11 513, and -€1784, €4639, and -€9046, respectively. **Conclusions:** The present analysis shows that, according to effectiveness data from the XAMOS study (Spanish and multinational cohorts), an increase in the usage of rivaroxaban in VTE prophylaxis would lead to significant direct cost reduction in elective THR and TKR patients.

The purpose of this work is to estimate the costs associated with managing patients with MS in Panama and evaluating the impact of the disease on their health-related quality of life (HRQoL). Multicentric observational, retrospective, cross-sectional study. The costs were estimated from societal and patient perspectives and expressed in USD, 2015. The focus of the study is based on prevalence and on a "bottom-up" approach. To estimate the total cost per patient, annual reported use for each resource was multiplied by its unit cost. To evaluate HRQoL, patients completed the EQ-5D-3L questionnaire. 108 patients took part in the study. 82.41% were women with 44.78 (SD: 12.27) years. 61.11% presented mild (EDSS = 0-3.5), 25.93% moderate (EDSS = 3.5-6) and 12.96%, severe disability (EDSS≥6.5). The mean annual cost from the patient's perspective was estimated at 777.99 USD (SD: 1,741.45) per patient. The mean cost from a societal perspective was estimated at 23,803.21 USD (SD: 13,331.83) per patient. Disease-modifying therapies (DMT) accounted for the main component of the cost. A deterioration in HRQoL was observed as the disease advances and as disability increases, with mobility and usual activities being the areas most affected by its progression. From both perspective, the cost per MS patient in Panama is high. In addition to the high economic impact, MS also exerts a negative impact on patient HRQoL, which increases as the disease advances.

Background/objectives To elicit and compare preferences in terms of the attributes of home enteral nutrition (HEN) among patients and physicians, using a discrete choice experiment (DCE). Subjects/methods A DCE comprising eight choice scenarios, with six HEN attributes (tolerability, adaptation to comorbidities, nutrition and calories, handling, connections and information; two levels each) was designed. The Relative Importance (RI) for patients and physicians of each attribute was estimated. Sociodemographic and clinical variables, as well as additional questions (n = 8) were compiled to analyze possible explanatory variables and other preferences. Results A total of 148 HEN patients (71 needing caregivers to answer on their behalf) and 114 physicians completed the DCE. The most important attributes for patients were adaptation to comorbidities (33% RI), tolerability (33% RI), and nutrition and calories (26% RI). Significantly, younger patients had stronger preferences for tolerability whereas elderly ones (≥75 years) were more concerned about handling. In comparison, physicians gave a higher RI to tolerability, and nutrition and calories compared to patients (p = 0.002). Overall, a higher percentage of physicians answered that HEN characteristics such as easy-handling bags (85.1 vs. 64.9%; p = 0.001), container material (69.3 vs. 57.1%; p = 0.003) or reusable containers (79.8 vs. 70.3%; p = 0.01) were “important” or “very important” compared to patients. Conclusions Our findings showed that although patients and physicians have a similar perception about the relevance of different HEN attributes, the relative weight given to each one varies between them. Therefore, both points of view should be considered when choosing a HEN product in order to improve patients’ satisfaction and clinical outcomes.

Juan Carlos Torre-Alonso,1 Rubén Queiro,2 Marta Comellas,3 Luís Lizán,3,4 Carles Blanch5 1Rheumatology Department, Faculty of Medicine and Health Sciences, University of Oviedo, Hospital Monte Naranco, Oviedo, Spain; 2Rheumatology Division, Hospital Universitario Central de Asturias (HUCA), Oviedo, Spain; 3Outcomes 10, Castellón de la Plana, Spain; 4Medicine Department, Jaime I University, Castellón de la Plana, Spain; 5Health Economics & Market Access, Novartis Pharmaceuticals, Barcelona, Spain Objective: This review aims to summarize the current literature on patient-reported outcomes (PROs) in spondyloarthritis (SpA). Patients and methods: We performed a systematic literature review to identify studies (original articles and narrative and systematic reviews) regarding PROs (health-related quality of life [HRQoL], satisfaction, preferences, adherence/compliance, and persistence) in SpA patients published in the European Union through December 2016. International databases (Medline/PubMed, Cochrane Library, ISI Web of Knowledge, Scopus) were searched using keywords in English. The methodological quality of the studies was assessed using the Oxford Centre for Evidence-Based Medicine criteria. Results: A total of 26 publications met the inclusion criteria. Generally, studies indicated that SpA has a negative impact on patients’ HRQoL. In patients with ankylosing spondylitis, physical domains were more affected than emotional ones, whereas for psoriatic arthritis, both physical and psychological factors were strongly affected by the disease. Data indicated that biological agents (BAs) greatly contributed to improvement in HRQoL in both ankylosing spondylitis and psoriatic arthritis patients. Findings on compliance with BAs were heterogeneous. However, persistence rates exceeded 50% irrespective of the BA administered. Results on preferences indicated that most SpA patients prefer being involved in decisions regarding their treatment and that besides efficacy and safety, frequency and route of administration may influence patients’ preferences for BAs. Conclusion: Implementing management programs for SpA patients focuses on the physical, emotional, and social consequences of the disease, in addition to assessing and including patient preferences in the treatment decision-making process, could be crucial to improve patients’ HRQoL and ensure their satisfaction and compliance with treatment. Keywords: spondyloarthritis, ankylosing spondylitis, psoriatic arthritis, patient-reported outcomes, European Union, systematic review

BACKGROUND Multiple myeloma is a hematologic malignancy affecting bone marrow derived plasma cells. Current therapies are not able to eradicate the disease and most patients become refractory to the treatment. Lenalidomide and bortezomib have proved effective in the second-line treatment of these patients. OBJECTIVE To evaluate the cost-effectiveness of lenalidomide in combination with dexamethasone compared to bortezomib in combination with dexamethasone in patients with multiple myeloma previously treated with bortezomib, from the perspective of the Chilean National Health Service. METHODOLOGY A four-state Markov model (preprogression on treatment; preprogression off treatment, progression and death) was used to simulate the evolution of a cohort of multiple myeloma patients over a 25-year time horizon. Efficacy data, resource use and frequency of adverse events were extracted from MM009/010 studies and a retrospective analysis of retreatment with bortezomib. All inputs were validated by experts. A 3% annual discount rate was used for costs and health outcomes. The robustness of the results was evaluated through univariate and probabilistic sensitivity analyses. RESULTS Lenalidomide in combination with dexamethasone treatment provided 1.41 incremental life years and 0.83 incremental quality-adjusted life years in comparison with bortezomib in combination with dexamethasone, with an incremental cost of 11 864 597.86 CLP (19 589.86 US$). The incremental cost-effectiveness and cost-utility ratio were estimated at 8 410 266.92 CLP (13 886,35 US$) / incremental life year and 14 271 896.16 CLP (23 564,59 US$)/incremental quality-adjusted life years, respectively. CONCLUSIONS Lenalidomide in combination with dexamethasone represents a potentially cost-effective alternative for the second-line treatment of patients with multiple myeloma who are not eligible for transplantation, from the perspective of the Chilean National Health Service. CONTEXTO El mieloma múltiple es una neoplasia de las células plasmáticas de la medula ósea. Las terapias disponibles no son curativas y la mayoría de los pacientes se vuelve refractario al tratamiento. Agentes como lenalidomida y bortezomib han demostrado su eficacia en el tratamien-to en segunda línea de estos pacientes. OBJETIVO Evaluar el costo-efectividad de la combinación lenalidomida/dexametasona frente a bortezomib/dexametasona en pacientes con mieloma múltiple, no candidatos a trasplante, previamente tratados con bortezomib, desde la perspectiva del sistema nacional de salud chileno. METODOLOGÍA Se empleó un modelo de Markov que simula la evolución de una cohorte de pacientes a través de cuatro estados de salud (preprogresión en tratamiento, preprogresión sin tratamiento, progresión o muerte) en un horizonte temporal de 25 años. Los datos de eficacia, uso de recursos y frecuencia de efectos adversos fueron extraídos de los ensayos sobre mieloma múltiple MM-009 y MM-010 y de un estudio retrospectivo de retratamiento con bortezomib. Todos los parámetros fueron validados por expertos. Se aplicó una tasa de descuento en costos y beneficios de 3%. La robustez de los resultados fue evaluada mediante un análisis de sensibilidad univariante y probabilístico. RESULTADOS El tratamiento con lenalidomida/dexametasona proporciona 1,41 años de vida y 0,83 años de vida ajustados por calidad incrementales respecto a bortezomib/dexametasona, con un costo incremental de 11 864 597,86 pesos chilenos (19 589,86 dólares). La ratio de cos-to-efectividad y costo-utilidad incremental se cifró en 8 410 266,92 pesos chilenos (13 886,35 dólares) por año de vida ganado y 14 271 896,16 pesos chilenos (23 564,59 dólares) por año de vida ajustado por calidad respectivamente. CONCLUSIÓN La lenalidomida/dexametasona representa una alternativa potencialmente costo-efectiva, desde la perspectiva del sistema nacional de salud chileno, para el tratamiento en segunda línea de pacientes con mieloma múltiple no candidatos a trasplante.

La Diabetes es una enfermedad crónica y prevalente, que tiene un desarrollo gradual ypara cuyo control son esenciales el consejo y la guía del personal sanitario, junto conla atención del paciente. Por lo tanto, resulta imprescindible que el paciente conozcay entienda su patología junto con las opciones para su tratamiento, cómo afecta a sucalidad de vida, así como que pueda valorar sus propias preferencias y sepa dónde hade buscar información. Se ha elaborado una herramienta de ayuda con el objetivo deproporcionar información sobre las diferentes opciones de tratamiento, de manera quefacilite la reflexión y la discusión conjunta con el profesional. El resultado ha sido la creaciónde un tríptico. En conclusión, se ha conseguido implementar un instrumento deayuda para que los pacientes conozcan más detalladamente acerca de su patología ypuedan tomar decisiones compartidas con el profesional sanitario según sus preferencias,aumentando la confianza en el sistema de salud y la adherencia al tratamiento. Diabetes is a chronic and prevalent disease, which has a gradual development andfor its control are essential advice and guidance of health personal, together with thepatient’s attention. Therefore, it is imperative that the patient knows and understands their pathology along with the options for their treatment, how it affects their quality oflife, as well as being able to value their own preferences and look for where to look forinformation. An aid tool has been developed with the objective of providing informationon the different treatment options, so as to facilitate reflection and joint discussion withthe professional. The result has been the creation of a triptych. In conclusion, an instrumenthas been implemented to help patients to know more about their pathology andto make decisions that are shared with the healthcare professional according to theirpreferences, increasing confidence in the health system and adherence to treatment.

Introducción: Las herramientas de ayuda para la toma de decisiones compartidas son materiales, con información fiable basada en estudios científicos, sobre una determinada enfermedad o problema de salud en cuestión. Las herramientas son utilizadas para ayudar a las personas a sentirse más informadas y cómodas, para tomar decisiones sobre un tema de salud como el expuesto en el trabajo, teniendo en cuenta sus preferencias y valores. Además, facilitan la relación de las personas afectadas por una enfermedad y los profesionales sanitarios con el objetivo de llegar a una toma de decisiones con junta. Metodología: En este artículo se ha creado una herramienta para la toma de decisiones compartidas, realizándose un análisis y una comparación de los distintos anticoagulantes presentes en la actualidad para la prevención del ictus y la embolia sistémica en pacientes con fibrilación auricular no valvular (FANV). Resultados: La presente herramienta, que consta de un tríptico para poder ser utilizado en Atención Primaria, quiere ser probado dentro de las prácticas que realicemos el próximo curso y de esta manera comprobar su utilidad. Introduction: Shared decision-support tools are materials, with reliable scientific based information, about a given disease or health problem. Tools are used to help people feel more informed and comfortable, Make decisions on a health issue such as the one exposed in the work, taking into account their preferences and values, and facilitate the relationship of people affected by a disease and health professionals with the goal of reaching joint decision-making. Methodology: This article has created a tool for shared decision making, with an analysis and comparison of the different anticoagulants present for the prevention of stroke and systemic embolism in patients with non-valvular atrial fibrillation (FVAC). Results: This tool, which consists of a triptych to be used in Primary Care, wants to be tested within the practices that we perform the next course and thus prove their usefulness.

Establishing a home enteral nutrition (HEN) that is adapted to the patient's needs and preferences can improve their quality of life and adherence, contributing to a higher treatment efficiency, better prognosis and cost reduction. As in most cases, patients need total or partial help from their caregivers, and there is a need for evaluating how well do caregivers know their patients' priorities.Exploring patients' preferences for HEN characteristics in Spain, and the concordance between patients and caregivers.A cross-sectional observational study based on the discrete choice experiment methodology. A set of eight choice scenarios generated from six attributes with two levels each was presented along with an ad hoc questionnaire on the importance and satisfaction with HEN. The relative importance (RI) of each attribute and the patient-caregiver concordance was estimated in every question.One hundred and forty-eight patients participated, and in 77 cases both the patient and the caregiver took the survey. The most important attributes (RI) for HEN were adaptation to comorbidities (33%), tolerability (33%), nutrients and calories (26%) and package characteristics (8%). Patients showed a high degree of satisfaction with the assistance received. Concordance between patient and caregiver was found in every question, being it moderate to good.According to patients, an ideal HEN product would be adaptable to comorbidities, easy to tolerate, providing the necessary nutrients and calories, with an easy to handle package. Caregivers know well their patients' preferences.

Introduccion: establecer una nutricion enteral domiciliaria (NED) adaptada a las necesidades y preferencias del paciente puede mejorar la calidad de vida y la adherencia, contribuyendo a una mayor eficiencia del tratamiento, mejor pronostico y reduccion de costes. En muchos casos los pacientes requieren ayuda total o parcial de cuidadores, por lo que es importante evaluar hasta que punto estos conocen sus preferencias. Objetivos: explorar las preferencias de los pacientes por las caracteristicas de la NED en Espana, y la concordancia entre paciente y cuidador. Metodos: estudio observacional, transversal, basado en la metodologia del experimento de eleccion discreta. Se presentaron ocho escenarios de eleccion generados a partir de seis atributos con dos niveles, y un cuestionario ad hocde importancia y satisfaccion con la NED. Se estimo la importancia relativa (IR) de cada atributo y la concordancia paciente-cuidador en todas las cuestiones. Resultados: participaron 148 pacientes; en 77 casos cumplimentaron las cuestiones los pacientes y sus cuidadores. Los atributos mas importantes (IR) en la NED fueron adaptabilidad a comorbilidades (33%), tolerabilidad (33%), aporte de nutrientes y calorias (26%) y caracteristicas del envase (8%). Los pacientes mostraron un elevado grado de satisfaccion con la asistencia recibida. Se encontro concordancia paciente-cuidador en todas las cuestiones, siendo esta de moderada a buena. Conclusiones: segun los pacientes, el producto para NED ideal se adapta a las comorbilidades, es facilmente tolerable, y aporta los nutrientes y calorias necesarios, con un envase de facil manejo. Los cuidadores conocen bien las preferencias del paciente.

Background Home enteral nutrition (HEN) is a therapeutic method used in patients who are unable to ingest the required amounts of nutrients but retain a functional gastrointestinal tract. The objective of this study was to compose a specific questionnaire for measuring health-related quality of life (HRQoL) in HEN patients irrespective of their underlying condition and HEN route of administration. Methods Literature review, focus groups and semi-structured interviews were used to propose an initial version of the questionnaire which was answered by 165 participants. The responses were analyzed using the Rasch methodology. Firstly, the appropriateness of response options was assessed. Then, the differential item functioning (DIF) was evaluated. Finally, the item fit statistics, infit and outfit, were determined. Results Rasch analysis was performed on the responses given to the 43 items included in the initial questionnaire. Four items were excluded because more than 50% of respondents answered that the situation proposed did not apply to them. Seven items that showed overlapping and disordered categories were also removed. Pairwise DIF analysis were performed in subgroups defined by underlying disease and administration route. Eleven items presented DIF and were eliminated from the questionnaire. Finally, four items were deleted after analyzing the fit statistics, three of which did not fit the Rasch model and one did not belong to either of the dimensions. The final version of NutriQoL® includes 17 items. Conclusions NutriQoL® is a useful instrument to assess the HRQoL of HEN patients with any disease and any administration route.

I Belinchón,1 R Rivera,2 C Blanch,3 M Comellas,4 L Lizán4,5 1Department of Dermatology, Hospital General Universitario de Alicante, Alicante, 2Department of Dermatology, Hospital Universitario 12 de Octubre, Madrid, 3Novartis Farmacéutica S.A., Barcelona, 4Outcomes’10, Castellón, Spain; 5Medical Department, University Jaime I, Castellón, Spain Background and objective: Adherence to treatment in patients with psoriasis is often poor. An investigation of patient preferences and satisfaction with treatment may be important, based on the expected correlation with therapy compliance. This paper aims to examine and describe the current literature on patient preferences, satisfaction and adherence to treatment for psoriasis in the European Union (EU).Methods: Electronic searches were conducted using PubMed, ISI Web of Knowledge, Scopus, Spanish databases and Google Scholar. European studies published in English or Spanish between January 1, 2009 and December 31, 2014 regarding patient-reported outcomes in psoriatic patients were included. Studies conducted in non-EU countries, letters to the editor, editorials, experts’ opinions, case studies, congress proceedings, publications that did not differentiate between patients with psoriasis and psoriatic arthritis or studies related to specific treatment were excluded.Results: A total of 1,769 titles were identified, of which 1,636 were excluded as they were duplicates or did not provide any relevant information. After a full-text reading and application of the inclusion/exclusion criteria, 46 publications were included. This paper will describe publications on adherence (n=4), preferences (n=5) and satisfaction with treatment (n=7). Results related to health-related quality of life articles (n=30) have been published elsewhere. Adherence rates are generally low in psoriasis patients regardless of the type of treatment, severity of disease or methods used to measure adherence. Biologic therapy is associated with greater clinical improvement. There is a direct association between physician recommendations, patient preferences and several domains of treatment satisfaction. Conclusion: The results of this review support the conclusion that adherence rates in patients with psoriasis are suboptimal and highlight the need to improve patient compliance and satisfaction with treatment. Patients’ preferences should be taken into account in the treatment decision-making process in order to improve patients’ clinical outcomes by ensuring satisfaction and adherence. Keywords: psoriasis, patient preference, adherence, satisfaction, systematic review, patient-reported outcomes, European Union

Purpose To define importance values assigned to attributes of biological agents (BAs) by Spanish patients with rheumatic diseases (rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis) and rheumatologists. Patients and methods This was an observational, cross-sectional design based upon a rank-based full-profile conjoint analysis. A literature review and four focus groups were undertaken to identify attributes and levels. An orthogonal matrix, combining the selected levels of attributes, was used to define scenarios. Participants ranked eight scenarios from 1 (most preferred) to 8 (least preferred). The relative importance (RI) of attributes was calculated. Multivariate regression analysis was performed to identify the characteristics that influenced the values of RI. A total of 488 patients (male 50.9%, mean age 50.6 [standard deviation {SD} 12.06] years, rheumatoid arthritis 33.8%, ankylosing spondylitis 32.4%, psoriatic arthritis 33.8%; mean time since diagnosis 12.6 [SD 8.2] years) and 136 rheumatologists (male 50.4%, mean age 46.4 [SD 9.1] years, mean time of practice 16.7 [SD 8.8] years) participated. Results The ideal BAs for patients and physicians, respectively, should allow pain relief and improvement of functional capacity (RI 39% and 44.7%), with low risk of adverse events (RI 24.9% and 30.5%), a long time prior to perceiving the need for a new dose (RI 16.4% and 12.4%), and self-administration at home (RI 19.7% and 12.5%), as identified through their preferences. Conclusion Although efficacy and safety are paramount for patients and rheumatologists to make a choice regarding BAs, the need for a low frequency of administration and the administration method also play a role as preference attributes for BAs.