title: The Spanish Psoriasis Patients' Association According to Its Members: Cross-Sectional Descriptive Study of Members' Opinions of the Association's Functions.
abstract: BACKGROUND
  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.
  
  
  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.
authors.affiliation: Área de Salud Pública y Epidemiología, Universitat Internacional de Catalunya, Sant Cugat del Vallés, Barcelona, España; Consorci Atenció Primària de l'Eixample, Transversal Group for Research in Primary Care, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, España. Electronic address: gonzalezdepaz@hotmail.com.
authors.forename: L
authors.initials: L
authors.lastname: González-de Paz
authors.affiliation: Servicio de Dermatología, Hospital Universitari Parc Taulí de Sabadell, Barcelona, España.
authors.forename: M
authors.initials: M
authors.lastname: Ribera
authors.affiliation: Servicio de Reumatología, Hospital Universitari Parc Taulí de Sabadell, Barcelona, España.
authors.forename: J
authors.initials: J
authors.lastname: Gratacós-Masmitjà
authors.affiliation: Servicio de Dermatología, Hospital de la Santa Creu i Sant Pau, Barcelona, España.
authors.forename: S
authors.initials: S
authors.lastname: Ros
authors.affiliation: Early Access & Health Economics, Novartis Farmacéutica, Barcelona, España.
authors.forename: C
authors.initials: C
authors.lastname: Blanch Mur
authors.affiliation: Acción Psoriasis, Barcelona, España.
authors.forename: S
authors.initials: S
authors.lastname: Alfonso-Zamora
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D015397:Program Evaluation; D011565:Psoriasis / Q000523:psychology; D011788:Quality of Life; D012657:Self-Help Groups / Q000458:organization & administration; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
keywords: Apoyo al paciente; Encuestas y cuestionarios; Modelo de Rasch; Pacientes; Patient advocacy; Patients; Psoriasis; Rasch model; Surveys and questionnaires