Patient associations are nonprofit groups that represent individuals with a health problem or specific disease. The only association for people with psoriasis in Spain that is affiliated with the International Federation of Psoriasis Associations is Acción Psoriasis. Founded in 1993, Acción Psoriasis currently has 36000 members (patients with the disease or interested relatives) and stands among the largest patient associations in Europe.1 The group's objectives are to improve medical care for patients with psoriasis, reduce the social stigma associated with the disease, and increase the number of scientific studies that serve to improve quality of life for those affected.2

The functions of patient associations have evolved over time. They initially served as support groups, providing mutual aid and encouragement. However, the needs patients themselves identified led them to organize additional services to provide support for families.3 Grants for research and arrangements for contact with institutions on behalf of those affected by a condition were other functions that were eventually added.4 In countries like the United States and the United Kingdom, these groups currently stand alongside health professionals and institutions when pushing for changes in policies and strategies.5 In Spain, however, the functions of groups like Acción Psoriasis have not been studied, and no hard data is available to confirm that members feel their activities truly help those affected by the disease. Members and friends of Acción Psoriasis were surveyed in 2014 in order to study how they view the association's functioning. Thus, the aim of this study was to analyze members’ perceptions of the association's societal role and determine whether or not they endorsed its functions.

A total of 26349 persons registered in the association's database were invited to respond; 854 (3.24%) at least partially completed questionnaires were returned and 746 could be analyzed, for a response rate of 2.83%. Questionnaires were excluded mainly because they were filled in by a patient's relative or others (health care professionals or administrative personnel). We also excluded returns from registered persons who did not reside in Spain.

A majority of the respondents (485 [65.0%]) only had cutaneous psoriasis, and 91 (12.2%) had been diagnosed within the past 5 years. Table 2 shows the descriptive statistics. Most respondents (460 [61.7%]) learned about the association on the Internet (from web pages or social networks) (Table 3). Table 3 also shows how the respondents ranked the credibility of information received from various sources and their confidence in those sources or satisfaction. In both cases (credibility and confidence/satisfaction), respondents awarded the highest rank to specialists; next came the association. Pharmacists and nurses ranked lowest.

The Rasch model analysis of opinions about functionality showed that items 1, 2, and 3 had outfit values outside the expected range. The scarce goodness of fit of these items in the model was attributable to their inclusion of 2 concepts in the wording. In accordance with the criteria established, they were eliminated from further analysis.

The high mean (SD) score of 7.53 (2.03) on the 10-point scale indicated strong support for the 13 association functions that could be analyzed. Item 11 (regarding participation in medical, scientific, health care, and political discussion forums) had the lowest difficulty score (4.36 on the 10-point scale), and 95.2% of the respondents considered that the association performed this function. Six other items (15, 8, 10, 14, 6, 16 in ascending order of perceived difficulty) had the support of 93.2% of the participants. These functions concern the association's representation of patients and interaction with groups and institutions. Items 13, 5, 4, and 12 were perceived to be the most problematic, or difficult, achieving scores higher than 5 on the scale. These items mainly refer to the association's personal services to members. However, even these activities or roles had the support of a majority, as they were endorsed by 81.4%. Item 9 (stating that the association speaks for patients with psoriasis in Spain) was perceived as the most problematic, or difficult; it received a score of 5.80 and was endorsed by 77.3% of the respondents. Table 4 shows the results for each item and the adjusted statistics.

Participants with lower levels of formal education tended to endorse the societal functions of Acción Psoriasis more firmly. However, even though the differences were statistically significant, they were not large in magnitude: the difference of 1.60 points on the 10-point scale between respondents with lower and higher levels of formal education cannot be considered important in practical terms. Neither age (r, 0.053; P=.146) nor other variables were associated with differences of opinion about the association's performance (Table 5).

This is the first study to evaluate perceptions about the functioning of the main Spanish association for people with psoriasis and their families. The results show that the performance of Acción Psoriasis is good and it enjoys considerable support from its members. A finding that particularly stands out is the credibility of and satisfaction with the information members receive from the association.

The functions the respondents endorsed most were related to activities to raise societal awareness of psoriasis and build bridges with other agents in the health care sector. Such functions are necessary for designing strategies for societal change that favor people with psoriasis. Patient associations in the United States explain patients’ points of view in debates, thus helping health care institutions and professionals, the pharmaceutical industry, and scientific associations to improve their efficiency.9,10 Functions whose performance received less support from the respondents were those that provided psychological or social support for members. Such functions are usually performed by professionals in health care centers in Spain, although patient associations become involved in other countries without leading to duplication of services.11 Closer ties between professionals and associations benefit patients directly, facilitating information transfer and improved management of the feelings that arise in relation to the stigma of psoriasis.12

The high opinions regarding the credibility of, confidence in, and satisfaction with the association expressed by large percentages of respondents suggest that our survey is robust. An unexpected finding was the relatively low assessment of the credibility of and satisfaction with family practitioners, pharmacists and nurses as sources of information; these groups were ranked below web pages and other patients. This finding suggests that although psoriasis is a highly prevalent disease—affecting 2.30% of the Spanish population13—these sources may not be providing the type of information about treatment and disease management that patients need. We think that nurses could take on a more active role in health care centers. In contexts where patient care is given by multidisciplinary teams, nurses can help patients approach psoriasis treatments effectively.14,15 An example of this type of program can be found in an intervention organized by the care team of Acción Psoriasis.16

A limitation of this study is the low response rate. From a total population of 26349, we received 746 responses that could be analyzed (2.83%), potentially affecting the accuracy of our estimates. However, the Rasch model has been shown to be very robust in simulations with small samples; although estimates of difficulty and endorsement might vary somewhat, their ranking does not.17 We therefore believe that if we had received a larger number of responses, the ordering of functions considered difficult to achieve would have remained the same. The results of this study can be applied to persons (patients and sympathizers) who are registered in the Acción Psoriasis database, not to all people with psoriasis. We believe the results reflect the true opinions of this group toward the functions performed by the association.

Luis González-de Paz has received fees related to research from Acción Psoriasis.

Miquel Ribera has received grants and payments related to research, consulting, and training from the following companies: Abbvie, Gebro Pharma, Janssen, Leo Pharma, MSD, Novartis, and Pfizer. He is currently a scientific consultant for Acción Psoriasis.

Jordi Gratacós-Masmitjà has received grants and payments related to research, consulting, and training from the following companies: Abbvie, Janssen, MSD, Novartis, and Pfizer. He is currently a scientific consultant for Acción Psoriasis.

Sandra Ros has received grants and payments related to research from Abbvie, Pfizer, Janssen, and Novartis. She is currently a scientific consultant for Acción Psoriasis.

Carles Blanch Mur is a full-time employee of Novartis Farmacéutica S.A.

Santiago Alfonso-Zamora is the manager of Acción Psoriasis.