A qualitative study with two focus groups of patients and rheumatologists was conducted. Typologies were used to identify the participating patient profiles in order to guarantee their representation (those associated and those not, different age groups, gender, with short and long disease progression). Similarly, another specific typology was designed for the rheumatologists (different ages, gender, with new technology and communication channel skills).

The focus groups took place within a month, in viewing facilities in possession of the standard requirements for this type of group, with a structurally and symbolically neutral ambience. The discussion was transcribed in literal format and analysis was semiological.

The group moderators were experts in qualitative techniques.

We contacted the Spanish coordinator of the Spondylitis Associations (CEDE) and Action Psoriasis to invite them to participate in the project. They were sent the typologies for selection of associated patients. Nonassociated patients were selected from a hospital centre with equal compliance of typologies. Finally, we contacted the rheumatologist participants directly coming from hospitals with different characteristics, from different cities and with different levels of experience in axial SpA and PA patient management.

Information on the following aspects was collected: (a) current knowledge of patients about the disease; (b) Information sources and channels (healthcare professionals, patient associations, internet, social networks, etc.); (c) confidence level, satisfaction and usefulness of the information received/requested/sought; (d) search chain/request for information (depending on the subject, the situation of the patient, their disease status, etc.); (e) information provision barriers and facilitators and (f) information which could be given to patients (type, form, format, time etc.).

A description of the focus group discussion was carried out.

In one focus group nine patients belonging to an association participated, five with axial SpA and four with PA. Six non-associated patients attended the other focus group, three with axial SpA, three with PA. The age range of the 15 patients varied from 19 to almost 80, 68% of whom were male and 20% with a disease of recent onset. All participants resided in the autonomous community of Madrid. Since the main findings were similar, we will describe them jointly below. All patients agreed that information on their disease is essential and that in general a high level of information is currently available to them.

The first source of information is the rheumatologist (both for associated and non-associated patients), but due to the amount and quality of it, the associated patients consider patient associations as a highly relevant alternative source. “I really discovered the disease and a whole lot of day to day living things when I went to one of the groups in the association”. Information they gain from family members/friends is not relevant. The use of other sources (internet, written press, television, social networks, forums, blogs, etc.) depends enormously on the patient profile but they are clearly less important information sources.

In general, the level of satisfaction with the information received is acceptable, but could be greatly optimised, particularly that provided by healthcare professionals. Regarding its veracity, for the majority this depends on the source: if it comes from a doctor or an association it is taken for granted that it is true. However, they are more critical opinions which defend that, regardless of the source, one has to search for systems to analyse veracity and particularly in written information (reference it, etc.). The veracity of internet information is doubtful (except the association and scientific society webs, etc.).

Great variability exists on the usefulness of the information received/sought. In general, patients find useful what the doctor or nurse tells them but the information obtained from the patient associations is particularly useful, since it is much more in keeping with what they are looking for/need.

The issues on which they demand more information (out of importance) for the patients are: disease progression, disease prognosis (the most important, particularly at the beginning), causal and trigger factors, pharmacological and non-pharmacological treatments, psychological aspects to the disease. As this advances, other concerns or needs appear such as issues relating to the world of employment, adaptations, administrative-legal issues and in the case of pregnancy, the mother–child impact, etc.

Regarding timing and when best to gain information, all patients say always, even if it is only to recap. One of the principal barriers to this that they mention is the lack of time in the doctor's surgery.

Patients unanimously agree too, that all information offered must be objective, updated and adapted to the patient (traits, time: it is not the same at diagnosis as long-term) in a positive and constructive tone.

Finally, to improve this situation, the patients proposed a series of actions which are summarised in Table 1.

A total of 11 rheumatologists participated, with favourable gender and age distribution.

Participants consider that the rheumatologist should be the main source of information. Nurses and other healthcare professionals, together with patient associations, from an informative viewpoint, would be complementary/reinforcements to the rheumatologist.

They consider that the patients with axial SpA and PA demand information on different aspects of their disease, and particularly on evolution, prognosis and treatments. They also demand information on alternative medicine, although it is believed that they later made little use of it. They do not usually demand information on additional tests. This usually increases over time and in some way demonstrates that patients actively seek information. They do not perceive of many differences with regard to information demands between patients with axial SpA and those with PA.

The demand for information is greater from younger people and varies if it is the first visit or successive visits. On disease diagnosis, patients are asked about genetic issues and fertility, treatments and disease prognosis to a greater extent. As time passes, information on sport and nutrition become more important. It also depends on other factors such as gender (more for women who also ask about specific issues such as fertility, or diet and nutrition) or educational level.

In the opinion of the rheumatologists, apart from the characteristics, cause and treatments, patients should be aware of other aspects which are presented in Table 2, where other proposals which arose in this group are listed.

They also believe it is pertinent to measure out the information, adapting it to the patient characteristics and needs and always avoiding catastrophic messages. Several special patient profiles were identified, where provision of information was more sensitive: patients of child-bearing age, older people, those with poor prognosis markers or with comorbidity or certain personalities traits (avoidance tactics, hypochondriacs, etc.). Verbal information continues to be key for the rheumatologists although other avenues should be explored, such as written information (leaflets), videos and technological applications.

Another series of proposals for improving patient information is suggested (Table 2).

The authors declare that no experiments using human beings or animals have been carried out for this research study.

The authors declare they have followed the protocols of their centre of work on patient data publication.

The authors declare that no patient data appear in this article.