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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

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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.

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OBJECTIVE: The knowledge of HIV serostatus may help the treatment and follow up of those infected people, and change the risky behaviours in those not infected. Epidemiological information from people tested can better address the activities of control and prevention of HIV infection. DESIGN: Collection of demographic and epidemiological information. PARTICIPANTS: People voluntary tested in four alternative test settings in Catalonia. MEASUREMENTS AND MAIN RESULTS: Of 1,733 petitions of voluntary testing, 63 (3.7%) were HIV positive. Overall prevalence in men were two fold than in women (4.6% vs 2.3%). In both years of study, the mean age for women HIV positive were higher than the mean age for women with aids. CONCLUSIONS: The results of this study confirm the age and sex pattern found for the HIV infection in other sentinel populations in Catalonia. Some measures should be taken in order to increase the accessibility of young women to the test.

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OBJECTIVES: To compare the evolution of the principal causes of death in Catalonia, Spain and to assess the impact of AIDS as a contributing factor to the increase of mortality in young people in Catalonia. METHODS: Data from the mortality register of Department of Health in Catalonia has been used. We have compared the principal causes of death in Catalonia for the global population and for the group of 20 to 39 year olds. We have calculated the potential years of life lost (PYLL) between the ages of 13 to 65. RESULTS: Since the first case of AIDS in 1981, AIDS has been the cause of death with the most important increase for the global population in Catalonia. AIDS is the sixth cause of death and the first cause of PYLL. For the young population in Catalonia (aged 20-39) AIDS became, in 1993, the first cause of death. From 1992 to 1993 the PYLL due to AIDS increased 5% in men and 51% in women. CONCLUSIONS: The present situation has led AIDS being the first cause of death among young population. The collaboration between mortality registers and AIDS registers is absolutely essential to assess more accurately the impact of AIDS on the mortality of population.

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OBJECTIVES: To evaluate the mortality pattern observed in relation to the AIDS epidemic, and to estimate the current and future demographic impact of AIDS among the population aged between 20 and 39 years in Catalonia, Spain. DESIGN: Spain has the highest cumulative incidence rate of AIDS in Europe. One-third of Spanish AIDS cases have been consistently reported from Catalonia, an autonomous region in northeastern Spain with a population of 6 million, and with Pattern I HIV transmission. In this study data from the population-based AIDS registry and death certificates in Catalonia were used. METHODS: Since 1981 AIDS data have been collected routinely from all hospitals using an active surveillance system. All causes of death are coded from death certificates (ICD-9). Mortality rates since 1981 were analysed by age and sex. To assess the relative importance of premature mortality due to AIDS, years of potential life lost (YPLL) before age 65 were used. RESULTS: Since 1982 there has been a continuous increase in crude mortality rates, particularly significant for men aged 20-39 years after 1986 (F < 0.001). While AIDS was the fourth most likely cause of death among people aged 20-39 years in 1988, by 1991 it was the second most likely. In 1990 AIDS contributed to 13,213 YPLL (8.7%) for men and 2579 YPLL (4%) for women. During the last few years AIDS-related deaths have had the highest mortality rate progression among young adults. CONCLUSION: According to the current available data, AIDS might become the leading cause of death for the population aged 20-39 years in the near future. AIDS is having an important impact on the demography of European countries with Pattern I transmission and high HIV prevalence rates.

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