At the present time, from the point of view of clinical management,1 the outpatient clinic is not thought of as an element that merely lends support to the hospitalization setting, but as an autonomous mechanism that enables the orderly flow of patients and guarantees continuity with primary care.

Rheumatology care is mostly centered in the ambulatory area (outpatient clinics and day hospitals). Undoubtedly, at a time in which administrations promote formulas that offer an alternative to hospital admission,2–5 the determination of rheumatology to wager on outpatient activity lends added value to the specialty.

Nevertheless, to a great extent, the health care field continues to measure the relative importance of a clinical discipline on the basis of the work of its professionals in the hospital wards. This is due, to a great extent, to the fact that the indicators of activity and quality of care standards focus on the process of hospital admission and hardly take into account the work done in the ambulatory setting. The availability of indicators and standards that guarantee the quality of the care provided in this area and reveal the true scope of the services it offers is essential to achieve the recognition of the importance of specialties, like rheumatology, that are not necessarily involved in the admission of patients.

In Spain, there are two documents, one drawn up in 2002 by the Society of Rheumatology of the Community of Madrid (SORCOM)6 and the other issued by the Spanish Society of Rheumatology (SER) in 2007,7 that establish the standards for quality in rheumatology care. These documents are highly useful when it comes to organizing and administering rheumatology departments, but they are general in nature, not specific for the outpatient setting. Moreover, they do not evaluate in depth some of the health care dynamics that have been gaining in importance in recent years.

In the ambulatory care setting, a number of articles have been published over the last few years concerning the activity that takes place in rheumatology day hospitals. Their performance has been evaluated in different departments in Spain,8 the situation in the Valencian Community has been analyzed—and proposals for improvement have been put forward9—and, recently, the Working Group on Day Hospitals of the SER defined a set of quality of care standards for this area.10 In contrast, none of the existing documents refer specifically to the activity carried out in the outpatient clinics.

The objective of the strategy we present, the EXTRELLA project, was to establish, by consensus, quality of care standards for rheumatology outpatient clinics. The EXTRELLA project participates in the program of the Plan ICARO for the improvement of the quality of care in rheumatology, a project of the SER (http://www.ser.es/investigacion/Proyectos/Icaro/icaro.php) that works toward the development of quality standards for their implementation in clinical practice.

The work, initiated in January 2013, was carried out with the participation of: (a) a scientific committee made up of 13 rheumatologists (a principal investigator and 12 research collaborators); (b) 5 nominal groups, which included a total of 57 rheumatology professionals (45 rheumatologists and 12 nurses specialized in rheumatology); and (c) a discussion group made up of patients. Methodological and logistic support was provided by the Research Unit of the SER (RU-SER).

Fig. 1 shows the dynamics of the project that led to the generation of the final document.

Figure 1.

Dynamics of the generation of the final document.

(0.15MB).

The project commenced with the constitution of a discussion group of patients, for the purpose of gathering their opinions on the care they received in the rheumatology outpatient clinics and to identify quality of care criteria that could be taken into account in the subsequent work with the professionals. The group consisted of 5 women and 4 men, ranging in age between 40 and 72 years, who had a variety of rheumatic diseases and had been being treated for at least 2 years in different hospitals of the Community of Madrid. A meeting of the group was called, in which the moderator was a methodologist from the RU-SER. The subjects for debate were structured, on the basis of a preestablished outline, in 4 major groups: (a) self-perception of health and disease; (b) access to a specialist, the visit and follow-up; (c) perceived satisfaction with the care received; and (d) suggestions for the improvement of patient care.

After that, the principal investigator drew up a first draft of the document, incorporating the contributions of the patient discussion group and the information provided by a systematic literature search performed by the RU-SER. The remaining members of the scientific committee reviewed this first draft and, with their opinions and suggestions, a second draft was drawn up, which was the version that was discussed in the nominal groups.

Two types of nominal groups were established: (a) with specialists in rheumatology (4 groups) and (b) with nurses specialized in rheumatology (1 group). The rheumatologists were selected taking into consideration gender parity (23 men and 22 women), geographic distribution that was equitable and proportional to the population of each Spanish autonomous community (8 from Andalusia, 7 from Catalonia, 6 from the Community of Madrid, 5 from the Valencian Community, 3 from Galicia, 2 each from the Canary Islands, Castile-La Mancha, Castile and León, and the Basque Country, and 1 each from Aragon, the Principality of Asturias, the Balearic Islands, Cantabria, Extremadura, La Rioja, the Region of Murcia and the Chartered Community of Navarre), type of hospital (15 level 1 or basic hospitals, 15 level 2 or referral hospitals and 15 level 3 or high-technology hospitals), and professional position (31 associate physicians, 9 section heads and 5 department heads). The nurses worked in hospitals in Andalusia (n=2), Aragon (n=1), the Canary Islands (n=1), Catalonia (n=2), the Valencian Community (n=2), the Community of Madrid (n=2), Galicia (n=1) and the Basque Country (n=1); of these, 2 worked in level 1 hospitals, 3 in level 2 hospitals and 7 in level 3 hospitals.

The discussion of the second draft was held in a series of 5 meetings—which required the attendance of the participants—one with each nominal group, in which the principal investigator put forward each of the items of the questionnaire and encouraged debate on them.

Once these sessions with the presence of the participants had been held, and after a period of reflection of approximately 3 weeks, each of the participants rated the interest of each item in the second draft on a scale of 0–10 (0: absolutely no interest; 10: maximum interest), and they also filled out those items that required a numeric expression. They were offered the possibility of not scoring those items in which they considered that they did not have a solidly based opinion on the content.

After that, the scores for each item were analyzed. Those items that received scores of 7 or over from at least 70% of the participants were maintained in the document and the rest were eliminated. Thus was generated a third draft in which new items were included, fruit of the contributions of the nominal groups, and in which the text of some of them were slightly modified.

This third draft was subjected to a first Delphi round, with the participation of the 58 specialists in rheumatology (45 from the nominal groups and 13 from the scientific committee) and the 12 nurses involved in the project. Each participant rated the interest of each item on a scale of 0–10. The mean, standard deviation, coefficient of variation (CV), median, 25th and 75th percentiles and interquartile range were calculated. After the results had been evaluated in the RU-SER, the items with a score of 7 or over from at least 70% of the participants, with an interquartile range of less than 4, went on to form part of the final document.

Those items that did not achieve a score of 7 or over from at least 70% of the participants and those that had an interquartile range greater than 4 were included in a second Delphi round. Subsequently, the items that achieved a score of 7 or over from at least 70% of the participants were added to the final document.

The CV was categorized according to the following cutoff points: (a) CV less than or equal to 25%=very low variability; (b) CV greater than 25% and less than or equal to 50%=low variability; (c) CV greater than 50% and less than or equal to 75%=intermediate variability; d) CV greater than 75% and less than or equal to 100%=high variability; and (e) CV greater than 100%=very high variability.

The consensus document comprises 148 standards distributed in 9 subject areas: (a) structure (n=22), (b) clinical activity and relationship with the patients (n=34), (c) planning (n=7), (d) levels of priority (n=5), (e) relationship with primary care, with the emergency department and with other departments of the hospital (n=20), (f) process (n=26), (g) nursing (n=13), (h) teaching and research (n=13) and (i) calculation of the activity (n=8).

One hundred eight items (73%) received a score of 7 or over from 90% or more of the participants; in 34 (23%), the percentage ranged between 80% and 89%, and in 6 (4%), between 70% and 79%. In 125 standards (84%), the CV was less than or equal to 25%.

Tables 1–9 show the consensus standards in each of the subject areas. The percentage of participants who gave a score of 7 or over is indicated, as are the mean, standard deviation, median and CV of the scores. The hard copy edition includes Tables 1–3; the online edition provides all 9 Tables (Supplementary material).

In the following sections, we summarize the content of each subject area.

The general guidelines for the clinical activity in outpatient clinics are described in the Guía de Gestión de Consultas Externas en Atención Especializada (Guidelines for the Management of Outpatient Clinics in Specialized Care) published by the Subdirectorate General of Specialized Care of the Spanish Ministry of Health.1 These guidelines are useful in terms of procedure, but make few references to quality of care.

With the present project, we have generated what, to our knowledge, is the first document of quality of care standards specifically designed to be applied in rheumatology outpatient clinics. Its major strengths lie in the utilization of a consensus methodology, in the large number of participants and in the inclusion of the perspective of the patient. Moreover, the document makes reference to all the activity carried out in the area of outpatient clinics, a circumstance that differentiates it from other previously published documents, which focus on quality of care standards for certain types of clinics, like those dealing with nursing in rheumatology11 and with early arthritis.12

The review of the literature carried out yielded no experience similar to that described here. In fact, the majority of the quality of care standards published focus on the management of specific diseases13–15 or on the regulation of the activity of specific functional units.16–18

The immediate reference of the EXTRELLA project is the document on quality of care standards drawn up by Alonso et al. and sponsored by the SER,7 in which the authors defined certain criteria for quality of care and for minimum time periods in rheumatology, both in patient and in training and research. The number of participants was very similar in both cases and consensus building was also achieved with 2 Delphi rounds. The differences between the 2 projects lie in that, in this one: (a) the participants who were not on the scientific committee were able to express, in the nominal groups, their opinion on the content of the questionnaire and propose changes; (b) the view of the patients was gathered through a discussion group; and (3) we listened to the opinions of nurses specialized in rheumatology (21% of all the participants).

Special care was taken to achieve a proportional territorial distribution of the participants, as well as stratification by hospital level, elements that are important since the aim was to obtain quality standards that would be valid regardless of the degree of complexity of the center and the health care model of the moment.

A considerable number of standards has been generated, classified according to 9 subject areas; the largest number correspond to areas with important content in terms of clinical care, such as “clinical activity and relationship with the patients” and “process”. Overall, the degree of agreement achieved can be considered very high. In fact, 90% of the participants gave scores of 7 or over in practically 3 fourths of the items. Nevertheless, there are differences by virtue of the different standards considered. The highest percentages were obtained for the standards for “calculation of the activity” and for “relationship with primary care, with the emergency department and with other departments of the hospital”, whereas the lowest percentages were obtained for the standards for “structure” and for “clinical activity and relationship with the patients”.

In the document, we advocate equipping the outpatient clinical with an adequate structure in terms of the physical dimension, as well as the clinical furnishings and electronic resources, we stress the need for easy and rapid communication between the patients and the department, and for patient care activities to be carried out in accordance with protocols. It is assumed that both the planning and management of the agendas correspond to the rheumatology department, that all the activity be computerized and that it is necessary to establish minimum times for patient care.

We also promote the creation of new modalities of care such as multidisciplinary clinics,19 one-stop clinics (rapid diagnosis units)2 and virtual consultation in which the patient and physician are not face-to-face,20–22 and we underscore the need to establish a functional connection with primary care, with the emergency department and with other departments of the hospital, in order to improve efficiency in the referral of those patients who, given their disease processes, will benefit the most from specialized care.12,23–25 Moreover, we reinforce the importance of the role of specialized nurses,26 who should have their own office and agenda, and we call attention to the fact that outpatient clinics are spaces in which teaching activity and clinical research are being carried out.

Finally, we maintain that the opinion of the patients should be gathered periodically so that we can measure the degree of satisfaction with the care received. This an important question, especially when increases in the overall perceived quality appear to depend more on improvements in aspects related to the structure and process than on the outcome.27

In conclusion, with the EXTRELLA project, consensus has been reached, with a high degree of agreement, on a set of quality of care standards that we consider may prove to be useful for the organization and management of the activity of the outpatient clinics of rheumatology departments.

Undoubtedly, at this moment in time, although it does not mean a decline in the care provided, in many centers in Spain, it is not possible to meet the standards presented here. In those cases, the document, far from being discouraging, can be considered a horizon to be reached, an objective to be attained, in short, as a reference framework when it comes to submitting proposals for improvements to the hospital management or to other levels of the administration.

This project was promoted by the Spanish Rheumatology Foundation with financial support from Roche. The company did not participate in the design of the project or intervene in the conclusions or writing of the final report or the present manuscript.

The authors declare they have no conflicts of interest involving the purpose of this study.