Young people with lupus feel their condition is limiting their opportunities, says study
According to a new study, led by the University of Sydney, young people with lupus feel that their condition is limited their opportunities in life.
The researchers examined the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset systemic lupus erythematosus (SLE) from organised focus groups and face-to-face interviews with 26 patients aged between 14 and 26 years old, from five Australian hospitals in 2013 and 2014, which allowed them to identify key themes.
The results were published in Arthritis Care & Research and showed that many patients felt lupus undermined their sense of identity, creating problems of self-consciousness and a sense of isolation. They also felt that their life opportunities were now restricted, in terms of narrower career options and threats to parenthood.
The study found that confusion and uncertainty was often caused by diagnostic delays and a lack of information and many felt resentful of their long-term treatment needs. The fact that may felt they are limited in their physical and social capacities, and restricted in their personal and career goals, underlines the importance of tackling these preconceptions during the treatment process.
The researchers concluded: “Psychosocial and educational interventions targeted at improving confidence, self-efficacy, disease-related knowledge and social support – and at resolving insecurities regarding patients’ capacity for self-management – may alleviate psychosocial distress and improve adherence, and thus optimise health outcomes of adolescents and young adults with SLE.”
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