Humanistic and economic burden of atopic dermatitis in pediatric patients in Spain: a systematic review.

Atopic dermatitis (AD) is a chronic, inflammatory skin disease affecting all age groups, particularly children. This systematic review provides an overview of the humanistic and economic disease burden in the pediatric population with AD in Spain. The evidence, collected from 11 observational studies published over the past 10 years, exhibits the most common characteristics of the patients, disease burden, patient-reported outcomes, use of resources, and treatment patterns. The burden of AD extends beyond physical symptoms, with associated comorbidities such as asthma and impaired health-related quality of life and mental health disorders, particularly in severe cases. Traditional therapies, primarily topical corticosteroids, face adherence and efficacy challenges. Despite promising innovative treatments and available biological therapies, their use is still limited in the pediatric population. The findings of the present review highlight the scarce scientific evidence on the economic burden of pediatric AD, as well as the most updated humanistic evidence on this disease. At the same time, the need for individualized care and innovative therapeutic interventions to address the multifaceted challenges of pediatric AD in Spain is evident.

Evaluating the Impact of a Training Program in Shared Decision-Making for Neurologists Treating People with Migraine.

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.

Características de las unidades de ictus y equipos de ictus en España en el año 2018. Proyecto Pre2Ictus / Characteristics of stroke units and stroke teams in Spain in 2018. Pre2Ictus project

Introducción: El objetivo del trabajo es describir las características de las unidades y equipos de ictus en España.MétodoEstudio transversal basado en un cuestionario ad hoc, diseñado por 5 expertos y dirigido a los neurólogos responsables de las unidades de ictus (UI) y los equipos de ictus (EI) con al menos un año de funcionamiento.ResultadosParticiparon 43 UI (61% del total) y 14 EI. La media (±DE) de neurólogos adscritos a las UI/EI fue de 4 ± 3. El 98% de las UI frente al 38% de los EI cuentan con neurólogo de guardia 24 h los 365 días. Disponen de enfermería especializada un 98% de las UI frente al 79% de los EI, de médico rehabilitador un 81% frente al 71% y de trabajador social un 86% frente al 71%. La mayoría de las UI (80%) tienen 4-6 camas con monitorización continua no invasiva. El número medio de camas no monitorizadas de las UI es de 14 ± 8 y de 12 ± 7 en los EI. La estancia media de los pacientes en las camas monitorizadas de las UI es de 3 ± 1 días. Todas las UI y el 86% de los EI pueden realizar trombólisis intravenosa; el 81% de las UI y el 21% de los EI pueden realizar trombectomía mecánica y el resto de los centros tiene posibilidad de derivación. El 44% de las UI dispone de un sistema de teleictus, que da servicio a 4 ± 3 centros. La actividad se recoge sistemáticamente en el 77% de las UI y en el 50% de los EI, pero su cumplimentación es < 75% en un 25% de los casos.ConclusionesLa mayoría de las UI y de los EI cumple las recomendaciones actuales. Para seguir mejorando la atención del paciente, resulta necesario optimizar el registro sistemático de su actividad. (AU)

Introduction: The aim of this work is to describe the characteristics of stroke units and stroke teams in Spain.MethodWe performed a cross-sectional study based on an ad hoc questionnaire designed by 5 experts and addressed to neurologists leading stroke units/teams that had been operational for ≥ 1 year.ResultsThe survey was completed by 43 stroke units (61% of units in Spain) and 14 stroke teams. The mean (SD) number of neurologists assigned to each unit/team is 4±3. 98% of stroke units (and 38% of stroke teams) have a neurologist on-call available 24hours, 365 days. 98% of stroke units (79% of stroke teams) have specialised nurse, 95% of units (71% of stroke teams) auxiliary personnel, 86% of units (71% of stroke teams) social worker, 81% of stroke units (71% of stroke teams) have a rehabilitation physician and 81% of stroke units (86% of stroke teams) a physiotherapist. Most stroke units (80%) have 4-6 beds with continuous non-invasive monitoring. The mean number of unmonitored beds is 14 (8) for stroke units and 12 (7) for stroke teams. The mean duration of non-invasive monitoring is 3 (1) days. All stroke units and 86% of stroke teams have intravenous thrombolysis available, and 81% of stroke units and 21% of stroke teams are able to perform mechanical thrombectomy, whereas the remaining centres have referral pathways in place. Telestroke systems are available at 44% of stroke units, providing support to a mean of 4 (3) centres. Activity is recorded in clinical registries by 77% of stroke units and 50% of stroke teams, but less than 75% of data is completed in 25% of cases.ConclusionsMost stroke units/teams comply with the current recommendations. The systematic use of clinical registries should be improved to further improve patient care. (AU)

Characteristics of stroke units and stroke teams in Spain in 2018. Pre2Ictus project.

INTRODUCTION: The aim of this work is to describe the characteristics of stroke units and stroke teams in Spain. METHODS: We performed a cross-sectional study based on an ad-hoc questionnaire designed by 5 experts and addressed to neurologists leading stroke units/teams that had been operational for ≥ 1 year. RESULTS: The survey was completed by 43 stroke units (61% of units in Spain) and 14 stroke teams. A mean (standard deviation) of 4 (3) neurologists were assigned to each stroke unit/team; 98% of stroke units (and 38% of stroke teams) have an on-call neurologist available 24 hours a day, 98% of units (79% of stroke teams) included specialised nurses, 86% of units (71% of stroke teams) included a social worker, and 81% of units (71% of stroke teams) included a rehabilitation physician. Most stroke units (80%) had 4--6 beds with continuous non-invasive monitoring. The mean number of unmonitored beds was 14 (8) for stroke units and 12 (7) for stroke teams. The mean duration of non-invasive monitoring was 3 (1) days. All stroke units and 86% of stroke teams had intravenous thrombolysis available, and 81% of stroke units and 21% of stroke teams were able to perform mechanical thrombectomy, whereas the remaining centres had referral pathways in place. Telestroke systems were in place at 44% of stroke units, providing support to a mean of 4 (3) centres. Activity is recorded in clinical registries by 77% of stroke units and 50% of stroke teams, but less than 75% of data is completed in 25% of cases. CONCLUSIONS: Most stroke units/teams comply with the current recommendations. The systematic use of clinical registries should be improved to further improve patient care.

Medidas de los resultados percibidos por el paciente en estudios de vida real en dermatitis atópica en España: revisión sistemática de la literatura / Patient-Reported Outcome Measures in Real-World Atopic Dermatitis Studies in Spain: A Systematic Review

La dermatitis atópica (DA) es una enfermedad cutánea inflamatoria crónica con síntomas tales como el prurito, que pueden causar una carga significativa en la vida del paciente. Los resultados percibidos por los pacientes (PRO) complementan a los resultados clínicos evaluados en la DA por los médicos. Esta revisión sistemática tiene como objetivo identificar y describir las medidas de los resultados percibidos por los pacientes (PROM) utilizadas en estudios observacionales de DA durante la última década en España. Se identificaron 18 PROM para medir 13 PRO diferentes que evalúan múltiples aspectos de la enfermedad, incluyendo los síntomas y la gravedad de la enfermedad, la interferencia con las actividades diarias, el impacto psicosocial y laboral, el empoderamiento del paciente y la calidad de vida relacionada con la salud (CVRS). La CVRS, los síntomas (principalmente el prurito) y la ansiedad/depresión fueron los PRO más evaluados, siendo el Dermatology Life Quality Index, la Escala Visual Analógica del prurito y la Hospital Anxiety and Depression Scale, las PROM más frecuentemente empleadas, respectivamente. El número creciente de estudios observacionales sobre DA que incluyen PROM en España sugiere un aumento de la importancia de los PRO en el manejo de la DA (AU)

Atopic dermatitis (AD) is a chronic inflammatory skin disease with symptoms such as pruritus that can be a major burden for patients. Patient-reported outcomes (PRO) complement clinician-reported outcomes in AD. This systematic review aims to identify and describe patient-reported outcome measures (PROM) used in observational studies of AD over the last decade in Spain. Eighteen PROM were identified to measure 13 different PRO that assess multiple aspects of the disease, including symptoms and disease severity, impact on daily activities and on work productivity/functioning, psychosocial impact, patient empowerment, and health-related quality of life (HRQoL). HRQoL, symptoms (particularly pruritus), and anxiety/depression were the most frequently assessed PRO, and the Dermatology Quality of Life Index, the Visual Analogue Pruritus Scale, and the Hospital Anxiety and Depression Scale were the most frequently used PROM, respectively. The growing number of observational studies on AD including PROM in Spain suggests that PRO are becoming increasingly important in the management of AD (AU)

[Translated article] Patient-Reported Outcome Measures in Real-World Atopic Dermatitis Studies in Spain: A Systematic Review / Medidas de los resultados percibidos por el paciente en estudios de vida real en dermatitis atópica en España: revisión sistemática de la literatura

Atopic dermatitis (AD) is a chronic inflammatory skin disease with symptoms such as pruritus that can be a major burden for patients. Patient-reported outcomes (PRO) complement clinician-reported outcomes in AD. This systematic review aims to identify and describe patient-reported outcome measures (PROM) used in observational studies of AD over the last decade in Spain. Eighteen PROM were identified to measure 13 different PRO that assess multiple aspects of the disease, including symptoms and disease severity, impact on daily activities and on work productivity/functioning, psychosocial impact, patient empowerment, and health-related quality of life (HRQoL). HRQoL, symptoms (particularly pruritus), and anxiety/depression were the most frequently assessed PRO, and the Dermatology Quality of Life Index, the Visual Analogue Pruritus Scale, and the Hospital Anxiety and Depression Scale were the most frequently used PROM, respectively. The growing number of observational studies on AD including PROM in Spain suggests that PRO are becoming increasingly important in the management of AD (AU)

La dermatitis atópica (DA) es una enfermedad cutánea inflamatoria crónica con síntomas tales como el prurito, que pueden causar una carga significativa en la vida del paciente. Los resultados percibidos por los pacientes (PRO) complementan a los resultados clínicos evaluados en la DA por los médicos. Esta revisión sistemática tiene como objetivo identificar y describir las medidas de los resultados percibidos por los pacientes (PROM) utilizadas en estudios observacionales de DA durante la última década en España. Se identificaron 18 PROM para medir 13 PRO diferentes que evalúan múltiples aspectos de la enfermedad, incluyendo los síntomas y la gravedad de la enfermedad, la interferencia con las actividades diarias, el impacto psicosocial y laboral, el empoderamiento del paciente y la calidad de vida relacionada con la salud (CVRS). La CVRS, los síntomas (principalmente el prurito) y la ansiedad/depresión fueron los PRO más evaluados, siendo el Dermatology Life Quality Index, la Escala Visual Analógica del prurito y la Hospital Anxiety and Depression Scale, las PROM más frecuentemente empleadas, respectivamente. El número creciente de estudios observacionales sobre DA que incluyen PROM en España sugiere un aumento de la importancia de los PRO en el manejo de la DA (AU)

Patient-Reported Outcome Measures in Real-World Atopic Dermatitis Studies in Spain: A Systematic Review. / Medidas de los resultados percibidos por el paciente en estudios de vida real en dermatitis atópica en España: revisión sistemática de la literatura.

Atopic dermatitis (AD) is a chronic inflammatory skin disease with symptoms such as pruritus that can be a major burden for patients. Patient-reported outcomes (PRO) complement clinician-reported outcomes in AD. This systematic review aims to identify and describe patient-reported outcome measures (PROM) used in observational studies of AD over the last decade in Spain. Eighteen PROM were identified to measure 13 different PRO that assess multiple aspects of the disease, including symptoms and disease severity, impact on daily activities and on work productivity/functioning, psychosocial impact, patient empowerment, and health-related quality of life (HRQoL). HRQoL, symptoms (particularly pruritus), and anxiety/depression were the most frequently assessed PRO, and the Dermatology Quality of Life Index, the Visual Analogue Pruritus Scale, and the Hospital Anxiety and Depression Scale were the most frequently used PROM, respectively. The growing number of observational studies on AD including PROM in Spain suggests that PRO are becoming increasingly important in the management of AD.

Multidisciplinary expert consensus on secondary fracture prevention in Spain.

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.

Characteristics of stroke units and stroke teams in Spain in 2018. Pre2Ictus project. / Características de las unidades de ictus y equipos de ictus en España en el año 2018. Proyecto Pre2Ictus.

INTRODUCTION: The aim of this work is to describe the characteristics of stroke units and stroke teams in Spain. METHOD: We performed a cross-sectional study based on an ad hoc questionnaire designed by 5 experts and addressed to neurologists leading stroke units/teams that had been operational for ≥ 1 year. RESULTS: The survey was completed by 43 stroke units (61% of units in Spain) and 14 stroke teams. The mean (SD) number of neurologists assigned to each unit/team is 4±3. 98% of stroke units (and 38% of stroke teams) have a neurologist on-call available 24hours, 365 days. 98% of stroke units (79% of stroke teams) have specialised nurse, 95% of units (71% of stroke teams) auxiliary personnel, 86% of units (71% of stroke teams) social worker, 81% of stroke units (71% of stroke teams) have a rehabilitation physician and 81% of stroke units (86% of stroke teams) a physiotherapist. Most stroke units (80%) have 4-6 beds with continuous non-invasive monitoring. The mean number of unmonitored beds is 14 (8) for stroke units and 12 (7) for stroke teams. The mean duration of non-invasive monitoring is 3 (1) days. All stroke units and 86% of stroke teams have intravenous thrombolysis available, and 81% of stroke units and 21% of stroke teams are able to perform mechanical thrombectomy, whereas the remaining centres have referral pathways in place. Telestroke systems are available at 44% of stroke units, providing support to a mean of 4 (3) centres. Activity is recorded in clinical registries by 77% of stroke units and 50% of stroke teams, but less than 75% of data is completed in 25% of cases. CONCLUSIONS: Most stroke units/teams comply with the current recommendations. The systematic use of clinical registries should be improved to further improve patient care.

Instrumentos para la valoración de los resultados percibidos por el paciente con psoriasis en España: revisión sistemática de la literatura / Patient-reported outcomes assessment tools for use in psoriasis in Spain: A systematic review

Objetivo: Revisar la bibliografía sobre instrumentos específicos de medida de los resultados percibidos por los pacientes (patient reported outcomes, PRO) validados y utilizados en población española con psoriasis, valorar sus propiedades psicométricas y describir los resultados de su aplicación práctica. Materiales y métodos: Revisión sistemática de la literatura científica en bases de datos internacionales (PubMed/Medline) y nacionales (Medes, Ibecs) referente a estudios que validen o implementen instrumentos específicos de valoración de PRO en población española con psoriasis. Se completó la búsqueda en bases de datos específicas de instrumentos para medir PRO (BiblioPRO, PROQOLID). Se incluyeron los estudios publicados en inglés o español hasta el 01/09/2017. Adicionalmente, se revisaron las listas de referencias bibliográficas de las publicaciones clave identificadas. La valoración de la calidad metodológica de los cuestionarios se efectuó con base en sus propiedades psicométricas (constructo, adaptación transcultural, fiabilidad, validez, factibilidad y sensibilidad al cambio). Resultados: Se seleccionaron 18 publicaciones. Seis artículos describieron la validación al español de 5 instrumentos de PRO: 4 cuestionarios de calidad de vida relacionada con la salud (CVRS) específicos de psoriasis/enfermedades dermatológicas y un cuestionario específico de satisfacción con el tratamiento. La valoración psicométrica muestra variabilidad en los criterios alcanzados por cada instrumento; el cuestionario de CVRS PSO-LIFE resultó el más completo. Los 12 artículos restantes correspondían a estudios observacionales que empleaban los instrumentos validados. Su utilización muestra un elevado impacto de la psoriasis en la CVRS, especialmente en pacientes jóvenes, de género femenino y con enfermedad grave. Conclusiones: Se han identificado 5 instrumentos específicos validados en España para valorar los PRO en pacientes con psoriasis. Dada la variedad de sus propiedades psicométricas, resulta esencial conocer las fortalezas y debilidades de cada uno para seleccionar el instrumento apropiado para cada situación. El empleo de estos cuestionarios pone de manifiesto el elevado impacto de la enfermedad en la CVRS de los pacientes. La evaluación de los PRO en el paciente con psoriasis complementa los resultados clínicos tradicionales y puede contribuir a un manejo más óptimo 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

Patient-reported outcomes assessment tools for use in psoriasis in Spain: A systematic review. / Instrumentos para la valoración de los resultados percibidos por el paciente con psoriasis en España: revisión sistemática de la literatura.

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.

The view of experts on initiatives to be undertaken to promote equity in the access to orphan drugs and specialised care for rare diseases in Spain: A Delphi consensus.

OBJECTIVES: To reach a consensus amongst experts on the most feasible actions to be undertaken to facilitate patient access to specialised care and orphan drugs (OD) in the public health sector in Spain. METHODS: Two Delphi rounds were completed. The questionnaire was based on a literature review and 2 focus groups. Agreement was sought on the desire (D) and prognosis (P) for the implementation within the next 5 years, on a 5-point Likert scale. Consensus was reached when ≥75% participants chose agreement (1-2) or disagreement options (4-5). RESULTS: 82 experts on rare disease (RD) participated. Agreement on the D and P was reached in 66.07% statements: OD pricing review [absence of clinical effectiveness (D:85.37%; P:85.90%), target population increase (D:79.27%; P:91.03%)]; reference team definition of referral protocols and clinical practice guidelines (D: 97.56%; P: 89.74%); and a unified, usable, etiology-based registry (D:97.56%; P:84.62%). D and P assessment diverged in 32.14% items: creation of a specific funding system for OD (D: 97.56%; P: 60.25%); and a network of medical teams to coordinate the care of RD patients (D: 99%; P: 62%). CONCLUSIONS: The results have shown the need to promote dialogue between stakeholders, introduce European recommendation to national and regional Spanish policies and set up priorities and undertake actions to drive relevant changes in current medical practice in managing RD patients.

Spanish consensus on treat to target for osteoporosis.

To reach a Spanish expert consensus on a treat-to-target strategy in osteoporosis, a Delphi Consensus Study has been developed. Most of the experts (59.8%) were rheumatologist with a mean clinical experience of 21.3 years (SD 8.5). Consensus was achieved for 70% of the items. Therapeutic objectives, patient follow-up scheme, treatment failure criteria, and appropriate treatment choice for use in T2T strategy in Spain have been defined. INTRODUCTION: The paper aims to achieve a Spanish expert consensus on a treat-to-target (T2T) strategy in osteoporosis. METHODS: A scientific committee led the project and was involved in expert panel identification and Delphi questionnaire development. Two Delphi rounds were completed. The first-round questionnaire included 24 items and assessed, using a seven-point Likert scale, the experts' wish (W) and prognosis (P) in 5 years for each topic (applicability, therapeutic objectives, patient follow-up, and possible treatment to be prescribed). Items for which there was no consensus in the first round were included in the second round. Consensus was defined as ≥75% agreement (somewhat/mostly/entirely agree) or disagreement (somewhat/mostly/entirely disagree) responses. RESULTS: Of the experts, 112 and 106 completed the first and second rounds, respectively. 59.8% were rheumatologists with a mean clinical experience of 21.3 years (SD 8.5). Consensus was achieved for 70% of the items, and was established regarding the utility of a T2T strategy to define therapeutic objectives, optimal follow-up, and therapeutic algorithm. Participants agreed on the utility of the bone mineral density (BMD) value (T-score >-2.5 SD for spine and >-2.5/-2.0 SD for femoral neck), lack of fractures, and fracture risk (FRAX) as therapeutic objectives. For measuring BMD changes, consensus was achieved on the suitability of hip and femoral neck locations. Experts agreed to consider treatment failure as when a significant BMD gain could not be achieved, or when a new fracture occurs within 2-3 years. There was consensus that all proposed therapies should achieve a therapeutic target through T2T strategy (treatments with the highest consensus scores were denosumab and teriparatide). CONCLUSION: The therapeutic objectives, patient follow-up scheme, treatment failure criteria, and appropriate treatment choice for use in T2T strategy in Spain have been established by a panel of experts. Some aspects nevertheless still require further analysis.

Análisis costo-efectividad de lenalidomida en combinación con dexametasona frente a bortezomib combinado con dexametasona en el tratamiento en segunda línea del mieloma múltiple en Chile / Cost-effectiveness of lenalidomide in combination with dexamethasone compared to bortezomib in combination with dexamethasone for the second-line treatment of multiple myeloma in Chile

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.

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.

Circuitos de atención médica de la paciente con osteoporosis postmenopáusica en España / Medical care circuits for postmenopausal patients in Spain

Objetivos: Alcanzar un consenso sobre los circuitos de atención médica de la paciente con osteoporosis postmenopáusica (OPM), incluyendo los circuitos de derivación y manejo (herramientas de evaluación y pruebas médicas), identificando perfiles de acuerdo con la opinión de expertos en metabolismo óseo pertenecientes al Sistema de Salud Español. Material y métodos: Se empleó la técnica Delphi con dos rondas de consulta sucesivas. Participaron 38 expertos en el manejo de OPM pertenecientes a 14 sociedades científicas. La revisión de la literatura y la opinión del comité científico nutrieron el cuestionario. Los expertos expresaron su "deseo" (1=rechazo total; 9=deseo más fuerte) y "pronóstico" (1=no ocurrirá en absoluto; 9=ocurrirá con máxima probabilidad) acerca de las cuestiones planteadas. Se alcanzó consenso cuando el 75% o más de los participantes puntuaron 1-3 (desacuerdo) o 7-9 (acuerdo). Adicionalmente, los expertos se dividieron en 3 grupos de discusión para complementar la información según los perfiles de pacientes previamente hallados en el método Delphi. Resultados: Se alcanzó 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, así como los recursos diagnósticos y terapéuticos que conviene emplear en estas pacientes. La paciente sin fractura debería ser manejada por Atención Primaria o Reumatología y se utilizarán escalas para valorar el riesgo de fractura en fases tempranas de la enfermedad. La paciente con fractura vertebral crónica debería referirse a Reumatología y Rehabilitación, y se derivará a Reumatología; mientras que la paciente con fractura vertebral aguda debería ser tratada por Cirugía Ortopédica, y así es como posiblemente ocurrirá. El diagnóstico de la paciente con fractura vertebral estará basado principalmente en la radiografía. Para la evaluación de la progresión se deberían utilizar cuestionarios sobre la capacidad funcional y escalas del dolor. Sin embargo, no se utilizarán en la práctica habitual debido a la falta de tiempo. La paciente con fractura no vertebral debería ser y será referida a Cirugía Ortopédica, recomendando realizar 3-4 radiografías anuales para asegurar la consolidación de la fractura. Conclusiones: Los resultados del método Delphi muestran los circuitos de derivación de la paciente con OPM, que se concentran en Atención Primaria y Reumatología, cuando no existe fractura, y Cirugía Ortopédica, en caso de fractura (AU)

Objectives: 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 (AU)

Adherence, satisfaction and preferences for treatment in patients with psoriasis in the European Union: a systematic review of the literature.

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.

Impacto económico de las exacerbaciones agudas en EPOC / No disponible

Objetivo: Sintetizar la información disponible acerca de estudios económicos relacionados con las exacerbaciones agudas asociadas a la EPOC publicados en España durante los últimos 5 años. Material y Métodos: Revisión ordenada de la literatura (MedLine/Pubmed, Cochrane Library, ISI WOK y Google Scholar) sobre estudios económicos referentes a la EPOC y las exacerbaciones agudas (EA-EPOC) en los últimos 5 años (2011-2015). Se incluyeron artículos originales y revisiones de costes directos, uso de recursos o evaluaciones económicas desde la perspectiva del SNS español. Los costes fueron actualizados a €, 2016. Resultados: Se identificaron 8 artículos de costes y uso de recursos, además de evaluaciones económicas de la EPOC y exacerbaciones realizados en España. La presencia de EA-EPOC se asoció a unos peores resultados clínicos, mayor uso de recursos, así como a un mayor coste medio anual por paciente (3.200,4 €vs. 1.403,1 €). El coste directo anual por exacerbación osciló entre 347,7 € y 482,8 €, de los cuales, más del 70% estaban asociados a las hospitalizaciones. Asimismo, existe una tendencia al aumento en el coste directo en pacientes de EPOC en España en los últimos años (2006-2010), por aumento de costes por paciente ingresado (p<0,001). Conclusiones: En nuestro país, el manejo de las EA-EPOC, y más específicamente, de las hospitalizaciones asociadas, constituye la mayor parte de los costes directos y uso de recursos atribuibles a la EPOC. La introducción de estrategias preventivas podría reducir de manera considerable los costes directos y el uso de recursos asociadas a las EA-EPOC en España

Objective: To review and synthesize the available information on economic evaluations related to acute exacerbations of COPD published in Spain during the last 5 years. Material and Method: A comprehensive review of the literature (MedLine/Pubmed, Cochrane Library, ISI WOK y Google Scholar) on economic evaluations related to COPD and acute exacerbations in Spain between 2011 and 2015 was performed. Original articles and reviews of the literature on direct cost, resource use and economic evaluations from the Spanish NHS perspective were included. Costs were update to Spanish €, 2016. Results: A total of 8 studies regarding direct cost, use of resources and economic evaluations of COPD published in Spain during the last 5 years were identified. The presence of exacerbations in COPD patients was associated with worse clinic outcomes together with an increase in use of resources and mean cost per COPD patient and year (3,200.4 € vs. 1,403.1 €) compared with patients without exacerbations. The average direct cost of an exacerbation ranged from 347.7 € and 482.8 €. The highest proportion of this cost (70%) was attributable to hospitalizations. In addition, there is a trend towards an increase in the mean cost per COPD patient in Spain during the last years (2006-2010), as the mean cost per hospitalized patient has risen during this period (p<0.001). Conclusion: In Spain, exacerbations-associated hospitalizations account for the largest portion of COPD expenses. The introduction of preventive strategies may reduce considerably healthcare costs and resource use related to COPD exacerbations

Uso de la alitretinoína oral para el tratamiento del eczema crónico de manos grave y refractario al tratamiento en el sistema sanitario público español: descripción y análisis de la práctica clínica actual / Oral Alitretinoin in the Treatment of Severe Refractory Chronic Hand Eczema in the Spanish National Health System: Description and Analysis of Current Clinical Practice

INTRODUCCIÓN: El eczema de manos (ECM) afecta a cerca del 10% de la población, presentándose entre el 5 y el 7% de los casos como una enfermedad crónica grave y siendo refractario al tratamiento con corticoides tópicos entre el 2 y el 4% de las veces. El propósito del artículo es describir el uso de la alitretinoína oral en pacientes con ECM refractario a corticoides tópicos potentes en el ámbito sanitario público español. MATERIAL Y MÉTODOS: Estudio observacional descriptivo, exploratorio, transversal, basado en la revisión retrospectiva de historias clínicas de pacientes con ECM en tratamiento con alitretinoína en el ámbito sanitario público español. RESULTADOS: Se revisaron 62 historias clínicas de pacientes de 13 centros distribuidos en 5 comunidades autónomas del territorio español. Alitretinoína se utilizó predominantemente a dosis de 30mg/día, principalmente en un único ciclo, tras el cual la mayoría de pacientes lograron una respuesta clínica satisfactoria según el juicio médico. Los eventos adversos fueron todos previsibles y en línea con los tratamientos sistémicos con retinoides. Los dermatólogos estuvieron de acuerdo en que los beneficios clínicos logrados con alitretinoína favorecían la adherencia al tratamiento y una reincorporación más rápida de los pacientes al trabajo. CONCLUSIÓN: Los resultados muestran un uso de alitretinoína oral en línea con las recomendaciones establecidas así como la buena respuesta al tratamiento asociado y los pocos efectos adversos. Los dermatólogos coinciden que los beneficios alcanzados favorecen la adherencia al tratamiento y mejoran la calidad de vida relacionada con la salud de los pacientes

BACKGROUND AND OBJECTIVE: Hand eczema affects nearly 10% of the population. The condition becomes severe and chronic in 5% to 7% of cases and is refractory to topical corticosteroids in 2% to 4%. This study aimed to describe the current use of oral alitretinoin in treating Spanish national health system patients with hand eczema that is refractory to potent topical corticosteroids. MATERIALS AND METHODS: Observational, descriptive, exploratory, cross-sectional study based on the retrospective analysis of records for patients with hand eczema treated with alitretinoin in the Spanish national health system. RESULTS: We reviewed the records for 62 patients in 13 hospitals in 5 different administrative areas (autonomous communities) of Spain. Alitretinoin was usually used at a dosage of 30mg/d. In most cases the physician judged the clinical response to be satisfactory after a single cycle. The recorded adverse effects were foreseeable and of the type reported for systemic retinoids. The dermatologists agreed that the clinical benefits achieved with alitretinoin favored adherence to treatment and an early return to work. CONCLUSIONS: The results show that oral alitretinoin is being used according to established recommendations and that response is good, with few adverse effects. The dermatologists agreed that the benefits favored adherence and improved the patients' health related quality of life

Oral Alitretinoin in the Treatment of Severe Refractory Chronic Hand Eczema in the Spanish National Health System: Description and Analysis of Current Clinical Practice.

BACKGROUND AND OBJECTIVE: Hand eczema affects nearly 10% of the population. The condition becomes severe and chronic in 5% to 7% of cases and is refractory to topical corticosteroids in 2% to 4%. This study aimed to describe the current use of oral alitretinoin in treating Spanish national health system patients with hand eczema that is refractory to potent topical corticosteroids. MATERIALS AND METHODS: Observational, descriptive, exploratory, cross-sectional study based on the retrospective analysis of records for patients with hand eczema treated with alitretinoin in the Spanish national health system. RESULTS: We reviewed the records for 62 patients in 13 hospitals in 5 different administrative areas (autonomous communities) of Spain. Alitretinoin was usually used at a dosage of 30mg/d. In most cases the physician judged the clinical response to be satisfactory after a single cycle. The recorded adverse effects were foreseeable and of the type reported for systemic retinoids. The dermatologists agreed that the clinical benefits achieved with alitretinoin favored adherence to treatment and an early return to work. CONCLUSIONS: The results show that oral alitretinoin is being used according to established recommendations and that response is good, with few adverse effects. The dermatologists agreed that the benefits favored adherence and improved the patients' health related quality of life.

Coste directo de la Enfermedad Pulmonar Obstructiva Crónica asociado a variaciones en adherencia y persistencia / No disponible

Objetivo: Estimar los costes evitables por paciente/año como consecuencia de mejorar la adherencia y persistencia a los tratamientos de la EPOC en el ámbito sanitario público español. Material y Método: Revisión ordenada de la literatura (MedLine/PubMed, Cochrane Library, ISI WOK, MEDES, IBECS, CSIC y Google Académico) sobre adherencia y persistencia relacionadas con costes directos de la EPOC en España entre 2002 y 2012. Se incluyeron artículos originales y revisiones de costes directos y uso de recursos asociados a la gravedad de EPOC, adherencia y persistencia. Se calculó la diferencia en el coste directo anual/paciente según la adherencia o no al tratamiento y estadio de la EPOC. Los costes fueron actualizados en Euros, 2012. Resultados: Se identificaron 6 artículos referidos a costes directos de la EPOC en España. No se encontraron artículos que relacionaran la adherencia y persistencia con costes de la enfermedad. La diferencia del coste directo anual entre el paciente adherente/no adherente, dependiendo de la fuente utilizada, varió entre 43 Euros y 601 Euros, alcanzando una reducción de entre 89 Euros y 1.674 Euros por paciente en la población con EPOC grave. La diferencia en costes directos anuales entre el paciente persistente/ no persistente fue de entre 47 Euros y 666 Euros, reduciéndose estos valores entre 99 Euros y 1.855 Euros por paciente en los casos graves. Conclusiones: Favorecer la adherencia y persistencia a los tratamientos de la EPOC mediante la indicación de terapias de seguimiento sencillo por el paciente se traduciría en una reducción en los costes directos de la patología

Objective: To assess the influence that changes in the rates of adherence and persistence to medications can exert over the estimated direct costs of COPD in the Spanish Public National Health System. Material and Method: A comprehensive review of the literature (MedLine/PubMed, Cochrane Library, ISI WOK, MEDES, IBECS, CSIC y Google Scholar) on adherence and persistence in relation with direct COPD costs in Spain between 2002 and 2012 was performed. Original articles reviews of the literature on direct cost, use of resources associated with COPD severity, adherence and persistence were included. The difference between mean annual direct cost per patient according to the adherence to treatment and COPD severity was estimated. Costs were update to spanish Euros, 2012. Results: 6 studies regarding direct costs of COPD in Spain were identified. Articles relating adherence and persistence with costs were not available. Differences of mean annual direct costs per patient amongst adherent/non adherent subjects ranged from 43 Euros to 601 Euros, depending on the source utilized, increasing this difference up to €89 - 1,674 per patient in severe cases. Differences of mean annual direct costs per patient between persistent/non persistent subjects ranged from 47 Euros to 666 Euros, incrementing from 99 Euros to 1,855 per patient in severe COPD. Conclusion: Increasing the adherence and persistence to COPD treatments by prescribing easy to follow treatments to patients could traduce into a reduction of COPD direct costs