Young people with lupus 'feel limited by their condition'

Young people with lupus are troubled by a feeling that their condition is limiting their opportunities in life, according to a new study.The Australian research, led by the University of Sydney, formed this conclusion after examining the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset systemic lupus erythematosus (SLE). The findings could help to inform strategies for improving treatment and health outcomes.The perceived social impact of lupus It is well known that disease activity, organ damage and treatment burden can often have a significant impact on young people with lupus, creating complications in their relationships with parents and peers.To study this further, the team organised focus groups and face-to-face interviews with 26 patients aged 14 to 26 years from five Australian hospitals in 2013 and 2014, allowing them to identify key themes.Results published in the medical journal Arthritis Care & Research showed that many patients felt lupus undermined their sense of identity, creating problems of self-consciousness and a sense of isolation, while it was also common for youngsters to feel their life opportunities were now restricted, in terms of narrower career options or threats to parenthood.Confusion and uncertainty was often caused by diagnostic delays and a lack of information, while many felt resentful of their long-term treatment needs. A desire for independence and self-reliance was key, though this was balanced ...
Source: Arthritis Research UK - Category: Rheumatology Source Type: news