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A model for the development and implementation of a national plan for the optimal management of early spondyloarthritis: the Esperanza Program
  1. Santiago Muñoz-Fernández1,
  2. Loreto Carmona2,
  3. Eduardo Collantes3,4,
  4. Juan Mulero5,6,
  5. M Jesús García-Yébenes7,
  6. Eugenio de Miguel8,
  7. Raquel Almodovar9,
  8. Cristina Fernández-Carballido10,
  9. José Francisco García Llorente11,
  10. Milena Gobbo12,
  11. the Esperanza Group
  1. 1Rheumatology Unit, Hospital Infanta Sofía, San Sebastián de los Reyes, Madrid, Spain
  2. 2Research Unit, Sociedad Española de Reumatología, Madrid, Spain
  3. 3Rheumatology Department, Hospital Universitario Reina Sofía, Córdoba, Spain
  4. 4School of Medicine, Universidad de Córdoba, Córdoba, Spain
  5. 5Rheumatology Department, Hospital Universitario Puerta de Hierro Majadahonda, Madrid, Spain
  6. 6Universidad Autónoma de Madrid, Madrid, Spain
  7. 7Research Unit, Sociedad Española de Reumatología, Madrid, Spain
  8. 8Rheumatology Department, Hospital Universitario La Paz, Madrid, Spain
  9. 9Rheumatology Department, Hospital Universitario Fundación de Alcorcón, Madrid, Spain
  10. 10Rheumatology Unit, Hospital General de Elda, Elda, Spain
  11. 11Rheumatology Department, Hospital de Basurto, Basurto, Spain
  12. 12Research Unit, Sociedad Española de Reumatología, Madrid, Spain
  1. Correspondence to Milena Gobbo, Research Unit, Sociedad Española de Reumatología, Calle Marqués del Duero, 5, 1, 28001 Madrid, Spain; milena.gobbo{at}ser.es

Abstract

Objectives To evaluate the performance of a healthcare programme in early spondyloarthritis (SpA).

Methods Based on previous analyses and expectations of a nominal group, the following were set: (1) minimum standards to create early SpA units; (2) standard operating procedures; and (3) eight performance indicators that can be measured in real time using a web-based platform.

Results At the end of the evaluation of the programme the expected level of performance was achieved in three of the indicators: ‘referral reliability’ (standard (S) >50%, real value (RV) 92%), ‘accessibility’ (S >90%, RV=91%) and ‘duration of first visit’ (S >50%, RV=53%). The performance in the remaining indicators was inferior: ‘success of referral criteria’ (S >50%, RV=28%), ‘clinical reports issued’ (S >90%, RV=25%), ‘feedback guarantee’ (S >85%, RV=2%), ‘missing data’ (S <10%, RV=24%) and ‘frequency of review’ (S >90%, RV=84%). Explanations for the low performance are provided.

Conclusions It is possible to implement a large-scale programme that is measurable.

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Spondyloarthritis (SpA) comprises a group of diseases affecting mainly young people that are not well recognised at the primary care level in general, and for which there is the widespread notion that no cure exists.1 Until recently the therapeutic options for patients with ankylosing spondylitis and SpA in general were very limited, but this has changed dramatically since the introduction of antitumour necrosis factor therapies.2,,4 Although not completely proven, it is considered that reducing the gap between the onset, diagnosis and treatment of SpA is key to improving the outcome and decreasing the global burden of the disease.

The use of clinics to detect early disease has been proposed as a strategy to improve the diagnosis and treatment of patients in many diseases including rheumatic diseases.5 6 The organisation of such clinics is difficult and subject to many obstacles.7 Furthermore, despite the widespread creation of early arthritis clinics, few have demonstrated whether specific aspects of organisation are associated with better outcomes than in regular clinics, and whether these early clinics are cost-effective.8

Based on the model for improvement of health,9 10 we hypothesised that we can only improve if we first measure. Following this argument and based on previous experience, the Spanish Society of Rheumatology (SER) has developed a national health programme for early SpA by implementing standards and indicators for functional early SpA units that can be measured in real time.

Methods

The SER appointed a Scientific Committee composed of six experts in SpA, an expert in quality and two methodologists who were responsible for the development and monitoring of the programme. The objectives of the Esperanza Program were: (1) to promote and enable the establishment of early SpA units; (2) to facilitate early diagnosis; (3) to reduce variability in the clinical management of SpA; and (4) to improve the knowledge and practical skills of general practitioners (GPs) and specialists in SpA. With these objectives, the Committee carried out a state analysis and, on the basis of the findings, they established a list of minimum standards for early SpA clinics and standard operating procedures for the clinics, and developed a set of quality indicators and their standards.

State analysis: supportive data for the plan

The data sources for this analysis were: (1) a pilot study in early SpA, the ESPIDEP study11; (2) previous experience of the SER with a national programme in early arthritis (the SERAP program)12; and (3) a focus group study which addressed the beliefs, needs and barriers of GPs for a programme in SpA.1 The methods used in the different studies and their detailed results are available in the online supplement. The results of the analyses and their effect on the design of the programme are shown in table 1.

Table 1

Summary of results and effects of the state analysis on the Esperanza Program

Minimum standards for early SpA clinics

Based on the previous analyses, the Committee developed a set of minimum standards for an early SpA clinic to be accepted and feasible (box 1). In winter 2007–8 the Committee made a competitive public call for 25 units to join the programme. In order to be admitted to the programme a centre had to fulfil all the standards in time and form.

Box 1 Standards for an early spondyloarthritis clinic: requirements to enter the programme as a participating unit (all must be fulfilled completely)

  • The referral area should be ≥250 000.

  • The primary care authorities (director of primary care or others) must sign approval of the programme and provide a list of the general practitioners who will be involved in it.

  • The director of the hospital in which the rheumatology unit will be ascribed must sign approval the plan.

  • The rheumatologist in the clinic must adhere (signed consent) to the use of standardised measures to treat and follow-up according to a dossier provided by the Scientific Committee and based on the highest level of evidence available at each point in time.

  • The head of department must approve the opening of a specific early spondyloarthritis clinic with details of the schedule and staff allocated.

  • Internet access should be guaranteed in all facilities involved in the programme (clinic and GP offices).

  • The rheumatologists running the clinics must facilitate communication with the GPs, detailing emails, mobile telephone or other means.

  • A pre-established calendar of meetings (teaching, standardisation, consultation) with the GPs of the health area should be made.

  • All involved should commit to use good clinical practices, especially those referred to data security (archives with key, computer with access control, etc).

  • The availability of appropriate technical equipment for correctly attending the patients should be guaranteed.

Standard operating procedures of clinics

Training process

The Committee developed an online course divided into four modules of 3 h each which provided 1.7 continuing medical education (CME) credits upon completion and evaluation. Slides could also be presented on the site by the rheumatologists to the GPs as a means of keeping in contact and to give an update of the programme at each training session. The rheumatologists attended an annual meeting at which specific topics were covered including research methodology and standardisation of measures, new criteria and therapeutic advances.

Referral process

The referral criteria were: (1) age <45 years; (2) symptom duration 3–24 months; and (3) at least one of the following: (a) inflammatory back pain (defined as two of the following: insidious onset, spinal morning stiffness for ≥30 min, improvement with exercise but not with rest); (b) asymmetrical arthritis, preferably in the lower limbs; (c) the presence of spinal or joint pain plus at least one of the following: psoriasis, inflammatory bowel disease (IBD), anterior uveitis, radiographic sacroiliitis, HLA-B27 positive, or a family history of spondylitis, psoriasis, IBD or anterior uveitis.

As the GP checked in the platform the criteria that were present, an ordered list of appointment times available at the SpA clinic was produced and the patient was given an appointment with the rheumatologist. Once at the clinic, the rheumatologist had to confirm the presence or absence of each referral criterion and act accordingly.

Diagnostic and follow-up procedures

The patients gave written informed consent at the first visit to the clinic. All procedures were applied to the patients who fulfilled the referral criteria whatever the diagnosis (see detailed list in online supplement).

Performance indicators for early SpA clinics

The indicators and their standards were generated by the Scientific Committee using nominal group methodology based on the supportive data and on guidelines.13 The indicators were chosen from a much larger list that was subsequently prioritised. The standards of indicators were set by the expert panel by consensus based on the expectations of the programme. The indicators used to monitor the programme together with their objectives and standard values (table 2) were embedded in a web-based platform that keeps together all processes and informs about evolution in real time. Full utilities of the platform are listed in the online supplement.

Table 2

Performance indicators of the Esperanza Program: description, standards and actual values at 15 October 2009

Results

The programme was evaluated in 25 units from April 2008 to 15 October 2009. At the time of the last report, 1812 GPs were participating in the programme and 792 patients had been referred by their GPs. A description of the patients is given in the online supplement.

The value of the performance indicators at 15 October 2009 is shown in table 2. The mean±SD delay between the primary care visit and an appointment with a rheumatologist in the participating areas was 11±28 days. In a survey of the participating areas prior to implementation of the programme the mean±SD delay was 40±25 days (range 15–120).

Discussion

Our results show that the functional implementation of a large-scale programme in early SpA is feasible and measurable. The standards, procedures and indicators were based on previous analyses of data from various sources, as well as on expectations and guidelines. In addition, all indicators and procedures were embedded in a web-based platform that permitted evaluation in real time and instant feedback between GPs, rheumatologists, patients and health policy makers. All indicators are reviewed periodically and specific training actions directed to improve those that are significantly below the expected standards. In addition, the standards need to be reassessed as some are too pessimistic and others over-optimistic.

We want to stress the importance of providing a good basis to any early clinic programme as this will be the key to success and to later efficiency. Size is important—after a year's experience, we consider that a medium size area of 250 000 will need a half-day clinic a week—but it is crucial also to understand the expectations, needs and barriers of GPs for a programme in early SpA as the delay in diagnosis14 15 was deemed to be clearly related to these. The need for training in SpA and in low back pain, the relevance of feedback from specialised care in order to support any referral protocol and a clear statement on the need to be endorsed by their superiors1 were key issues that shaped the programme. The poor response to the online course and the low utilisation of the automatic patient reports were disappointing. However, based on informal feedback from the units and from the GPs we ascertained that many GPs had attended the live course given by their consultant rheumatologists (standard 8) and had then found the CME credits to be unnecessary, and that feedback from the rheumatologists was optimal so that there was no need to browse the patients’ reports. As a result, the Committee is revising the course and will survey the satisfaction of GPs using less formal feedback. Also, the indicators need to be revised.

One difficulty with the programme is translating the indicators into computerised algorithms and formulae. For example, in order to measure the time from visiting the GP to attendance at the clinic (‘accessibility’), the system calculates the time from the date the GP browses the clinic appointments to the first available hour in the rheumatologist's diary and not to the date of the first visit as the delay is often related to inconvenience rather than to availability. Also, it is difficult to measure the actual time taken for a first visit so the system collates the times scheduled for first visit appointments.

Our experience with referral was good; most patients fulfilled the criteria as confirmed by the rheumatologists and were included in the programme with a time lag that was considered reasonable. This adherence to the protocol may reflect indirect satisfaction with the programme and we consider it a very important indicator as, in our previous experience with early arthritis clinics,12 16 many GPs used the programme to clear the backlog of patients even if they did not fulfil the referral criteria.

In conclusion, Esperanza may be used as a model programme for implementing early SpA units in a standardised and measurable way.

Acknowledgments

The Scientific Committee acknowledges the support of Drs Juan C López Robledillo and Javier Rivera and the excellent technological support by the Spanish Society of Rheumatology's programmers Francisco Javier Quesada and Juan Manuel Barrio.

References

View Abstract

Supplementary materials

Footnotes

  • Funding Pfizer (previously Wyeth) sponsored the Spanish Foundation of Rheumatology to run the Program Esperanza. The sponsor had no role in the study design; in the collection, analysis, or interpretation of data; in the writing of the report; or in the decision to submit the article for publication. Researchers were independent from funders. This work was partially supported by RETICS Program, RD08/0075 (RIER) from Instituto de Salud Carlos III (ISCIII), within the VI PN de I+D+I 2008-2011 (FEDER).

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the CEIC Hospital Universitario Reína Sofía, Córdoba.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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