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Revista Colombiana de Reumatología
versión impresa ISSN 0121-8123
Resumen
VALENCIA, Paula et al. Analysis of focus groups of Colombian patients with systemic lupus erythematosus: A qualitative look at representations of the disease. Rev.Colomb.Reumatol. [online]. 2017, vol.24, n.1, pp.11-17. ISSN 0121-8123. https://doi.org/10.1016/j.rcreu.2016.11.001.
Systemic lupus erythematosus (SLE) exposes patients to physical, psychological, family, work and social stress factors. The health-related quality of life of these patients is less than that of the general population, and stress is associated with worsening symptoms of SLE. Studying the factors that determine the perceptions of an SLE patient toward their disease would allow understanding the mechanisms by which quality of life is adversely affected, and promote interventions that ensure the well-being of these patients.
Objective:
To gain knowledge of the perceptions that SLE patients have regarding their disease.
Methodology:
A total of 50 patients (11 of them men) participated in 5 focus groups that were guided by a psychiatrist applying a semi-structured interview. The interview transcripts were categorised into the following 3 phases using grounded theory: open, axial and selective coding.
Results:
The results were organised into 7 categories: news of the diagnosis; causes of the disease; functional, social and work consequences; difficulties in establishing a diagnosis; non-pharmacological, alternative treatments, low or non-adherence and rejection of drug treatment; weaknesses in health care identified by the patient; and disease awareness.
Conclusions:
Knowing the perception that SLE patients have of their disease allows the physician, the patient, and the patient's family to take steps toward designing timely and effective interventions for integrated disease management, treatment adherence, and reducing the associated morbidity and costs of medical care.
Palabras clave : Perception; focus groups; systemic lupus erythematosus.
