Improvements in the management of patients with generalized pustular psoriasis in Spain: recommendations from a group of experts. / Mejoras en la atención al paciente con Psoriasis Pustulosa Generalizada en España: recomendaciones de un grupo de expertos.

This consensus document analyzed the management and emotional journey of patients with GPP (generalized pustular psoriasis), and the desirable course of the disease while detecting critical points and translating them into needs and recommendations. This project was conducted in 3 phases with participation from an advisory committee (n = 8), an expert panel (n = 15) and patients with GPP (n = 6). The patients' disease progression was heterogeneous due to disease variations, different health care models implemented and available resources, and the lack of diagnostic and treatment guidelines. A total of 45 different recommendations have been made to optimize management and address the emotional component of these patients. Five of them stand out for their impact and viability. Therefore, a roadmap of priorities has been made generally available to improve the management of patients with GPP.

[Impact of the COVID-19 pandemic: The point of view of patient associations]. / Impacto de la pandemia por COVID-19: El punto de vista de las asociaciones de pacientes.

INTRODUCTION AND OBJECTIVES: The COVID-19 pandemic is causing great social and health impact. We need to involve patients in identifying their new needs in this situation. The aim of this study was to assess the perception of organisations associated with the Spanish Patients' Forum regarding the pandemic. MATERIAL AND METHODS: A descriptive cross-sectional study using an online survey. Organisations associated with the FEP participated over the second half of May 2020. The questionnaire was pre-assessed by professionals and patients. The subject areas were overall effect of the pandemic, impact, the role of patient associations, limitations, and challenges. A descriptive analysis of the quantitative variables and a content analysis of the qualitative information were performed. RESULTS: The participation rate was 88.7%. The respondents highlighted the impact of the pandemic on the quality of life and well-being of patients and their families. They also reported the effect of the baseline disease and delay in treatment and testing. The pandemic has also affected patient associations. CONCLUSIONS: The pandemic has had an impact at the level of healthcare and other spheres of society. Patients' health, quality of life and use of health services have been affected. The need is highlighted to involve patients, their families, and legal representatives in the search for solutions adapted to the current needs of these groups.

Función y respaldo a la asociación de pacientes con psoriasis en España según sus miembros: estudio descriptivo transversal / The Spanish psoriasis patients’ association according to its members: cross-sectional descriptive study of members’ opinions of the association’s functions

INTRODUCCIÓN: Las asociaciones de pacientes son un elemento más del sistema sanitario, sin embargo en España se desconoce la funcionalidad y el respaldo que tienen según sus propios asociados. OBJETIVO: Estudiar la funcionalidad de la principal asociación española de pacientes y familiares afectados por la psoriasis según sus propios socios. MATERIAL Y MÉTODOS: Estudio mediante un cuestionario autoadministrado a una muestra de socios y/o simpatizantes (población total = 26.349 personas). Se estudió la credibilidad, confianza y satisfacción y se comparó con otros agentes sanitarios. El cuestionario de funcionalidad se analizó con un modelo de Rasch, y se examinó si había diferencias entre grupos de participantes con la prueba de ANOVA. RESULTADOS: Participaron 746 socios y/o simpatizantes (tasa de respuesta 2,83%). La credibilidad de la asociación se situó tras la de los especialistas que tratan la psoriasis. El respaldo medio a la función de la asociación fue notable (7,53 en una escala de 0 a 10). Según los socios las funciones mejor puntuadas se relacionaban con acciones colectivas para sensibilizar a la sociedad sobre el problema de la psoriasis, en cambio, tuvieron una menor valoración las acciones relacionadas con los servicios de atención personalizada. Solo hubo diferencias significativas (p < 0,05) en el respaldo a la asociación en función del nivel académico de los participantes. CONCLUSIONES: Las asociaciones son unas instituciones que contribuyen a la difusión de información de la enfermedad, que cuidan y representan a los pacientes. Los profesionales de salud e instituciones deberían tenerlas en cuenta para afrontar la psoriasis y diseñar políticas de salud efectivas

INTRODUCTION: Patient associations form part of health care systems, but little is known about how their members' view the functionality of these associations and whether they endorse their goals and activities. OBJECTIVE: To study how the members of the leading Spanish association of patients with psoriasis and their relatives view the group's functioning. MATERIAL AND METHODS: Survey study using a self-administered questionnaire answered by members of the association (total membership, 26 349 persons). The credibility of the association and respondents' confidence in and satisfaction with it were studied and compared with their attitudes toward other agents in the health care system. A Rasch model was used to analyze respondents' ranking of functions. Analysis of variance was used to study between-group differences. RESULTS: A total of 746 members participated (response rate 2.83%). The association's credibility was rated in second place, after that of specialists who treat psoriasis. Support for the association functions was good (7.53 on a scale of 0 to 10). The function the members rated highest was the raising of societal awareness of psoriasis and its problems. Rated lowest were functions related to personal services for members. Educational level was the only participant factor associated with significant differences in evaluations (P < .05). CONCLUSIONS: The psoriasis association contributes by disseminating information about the disease and patient care, and it serves to represent patients. Health professionals and institutions should take the association into account in their efforts to deal with the disease and in designing effective policies

The Spanish Psoriasis Patients' Association According to Its Members: Cross-Sectional Descriptive Study of Members' Opinions of the Association's Functions. / Función y respaldo a la asociación de pacientes con psoriasis en España según sus miembros: estudio descriptivo transversal.

INTRODUCTION: Patient associations form part of health care systems, but little is known about how their members' view the functionality of these associations and whether they endorse their goals and activities. OBJECTIVE: To study how the members of the leading Spanish association of patients with psoriasis and their relatives view the group's functioning. MATERIAL AND METHODS: Survey study using a self-administered questionnaire answered by members of the association (total membership, 26 349 persons). The credibility of the association and respondents' confidence in and satisfaction with it were studied and compared with their attitudes toward other agents in the health care system. A Rasch model was used to analyze respondents' ranking of functions. Analysis of variance was used to study between-group differences. RESULTS: A total of 746 members participated (response rate 2.83%). The association's credibility was rated in second place, after that of specialists who treat psoriasis. Support for the association functions was good (7.53 on a scale of 0 to 10). The function the members rated highest was the raising of societal awareness of psoriasis and its problems. Rated lowest were functions related to personal services for members. Educational level was the only participant factor associated with significant differences in evaluations (P<.05). CONCLUSIONS: The psoriasis association contributes by disseminating information about the disease and patient care, and it serves to represent patients. Health professionals and institutions should take the association into account in their efforts to deal with the disease and in designing effective policies.