Doctors, pharmacists, healthcare management officials, and people with lupus have reached a national and multidisciplinary consensus through the VITALES Project, in order to establish homogeneous criteria for evaluating health outcomes for those suffering from systemic lupus erythematosus (SLE).
This initiative, in which patients have participated through the Spanish Federation of Lupus (FELUPUS) and AstraZeneca, aims to advance towards a more comprehensive control of the pathology and provide useful tools that facilitate its monitoring in daily consultations.
SLE is an autoimmune, systemic, and very heterogeneous disease, with a changing clinical course that can cause permanent damage to multiple organs. Currently, the existing standardized instruments to assess lupus activity have mostly been designed for clinical trials, which complicates their routine use in healthcare practice.
"Due to the very nature of lupus and its variable and heterogeneous manifestations, it is complex, but necessary, to monitor the manifestations of the disease in a standardized and objective manner through validated instruments that determine the degree of activity and the damage associated with the disease. This has been our main purpose with VITALES," said José Luis Andreu, from the Rheumatology Service of the Puerta de Hierro University Hospital in Madrid and spokesperson for the project's coordinating committee.
For her part, Silvia Pérez Ortega, president of FELUPUS, states that: "For patients, for the medical community to officially recognize that pain, fatigue, and emotional state are vital indicators is a fundamental advance in the humanization of care. The complexity of lupus must also encompass in its care the symptoms or signs that are not visible, nor measurable; and in most cases, not addressable. The patient suffers from it and is not to blame for the lack of measures to assess and address it; what prevents a person from carrying out a 'normal' routine and limits them in their day-to-day life should not be underestimated."
With the aim of addressing these shortcomings, the VITALES Project has defined, through working groups and the Delphi methodology, that the comprehensive approach to the patient must be supported by three pillars: the level of lupus activity (clinical parameters, analytical data, and treatment response), the disease burden (accumulated damage and adverse effects of therapies), and quality of life.
As a practical application, the consensus proposes a new simplified scale to assess the activity of SLE, whose incorporation into the electronic medical record has received the support of 97 percent of the participants. Likewise, specialists advise periodically reviewing quality of life through validated questionnaires and quantifying accumulated damage annually.
"The implementation of the measures developed in VITALES in routine clinical practice can improve disease control, optimize therapeutic decisions, and generate useful information for both the clinical field and for research and health management. With this type of initiative, we achieve measures to improve care for lupus patients across the country," highlighted Carlos Marras from the Rheumatology Service of the Virgen de la Arrixaca Hospital in Murcia.