ABSTRACT
Objective:To demonstrate the state of the art and trends on the global status of chronic disease management of patients with systemic lupus erythematosus (SLE) in recent 30 years.Methods:Literature relating to chronic disease management of patients with lupus from 1989 to 2018 was retrieved from Web of Science TM, using Mesh terms "lupus" and "management". CiteSpace was used to analyze countries/institutions, authors/cited authors, cited references and keywords. The information visualization analysis of centrality and counts was used to reveal countries/institutions, active authors, cited references, hot topics and frontiers. Results:A total of 3 328 papers were included, and a year-by-year increase of the number of publications were noticed. Most productive authors were from Europe, who were also open to communication and collaboration. Dr. M Petri is a representative figure in the area of lupus and antiphospholipid syndrome. She was involved in the composition of lupus classification and treatment guidelines, and played important roles in the arena of lupus treatment. Most productive countries/organizations were/from the United States, the United Kingdom, Spain, Italy, since European countries and organizations paid much attention to colaboration. The basis was focused on the treatment and management of lupus nephritis, the classification of lupus, the classification criteria of APS, and the usage as wells efficacy evaluation of belimumab in lupus. According to the time trend, the most popular key words were treatment, classification, antiphospholipid syndrome, disease activity, pregnancy, which could be categorized to 14 clusters. We could predicted that comprehensive evaluation including the clinical efficacy and safety of biological agents, as well as studies on quality of life and psychological state of lupus patients would become the main stream in this area. The research focus shifted from the diagnosis and treatment of lupus to the quality of life of patients.Conclusion:CiteSpace is used to collect the information of the literatures about chronic disease management of lupus. The results have shown that chronic disease management is still a hot topic. CiteSpace could help us to identify authors and institutions that are collaborative, as well as the research subjects that may lead the directions and future development.
ABSTRACT
Objective To explore the illness experience and perspectives of youth patients with systemic lupus erythematosus (SLE) in China. Methods The research was conducted following phenomenological approach of qualitative research. Twelve patients with SLE were selected through purposive sampling method.The interviewer conducted hour-long semi-structured interviews according to the proposed interview outline.Data were analyzed based on Colaizzi phenomenological research method. Results Three themes were identified, including emotional experience since illness, SLE related limitations, and perceived stigma. Conclusions There exists a dynamic variation in disease related experience of young SLE patients.Understanding the feelings of those patients can help eliminate the negative factors so as to provide effective nursing intervention for patients and improve the quality of young patients′life with long-term living.