The morbidity of systemic lupus erythematosus (SLE) is particularly concerning to young adults and adolescents, as younger age at disease onset generally portends higher disease activity and organ involvement. Some concerns young adults have include lifestyle restrictions resulting from SLE that may restrict personal and career development.
Children and adolescents also have different physical and psychosocial needs that need to be addressed and supported while undergoing steroid and immunosuppressive therapy. Thus far, research into the burden of SLE on young adults has been limited to topics of physical health, self-esteem, and academic performance.
To assess the perspectives of young adults with SLE and better understand attitudes related to treatment burden and disease self-management, researchers affiliated with the University of Sydney and Children’s Hospital at Westmead in New South Wales, Australia organized focus groups and face-to-face structured interviews.1
Twenty-six participants, recruited from patients databases in 5 hospitals in New South Wales, Australia, were included in the study. Study eligibility included fluency in English, age between 14-30 years, and diagnosis of SLE prior to the age of 10. They had the option of attending focus groups or in-person semistructured interviews.
Study participants had a mean age of 18 years, 92% were female, with 62% identified self-identifying as being of Asian ethnicity. The median ± SD disease duration for participants was 6 ± 3.7 years. The manifestations of SLE reported by these subjected included arthritis (65%), skin lesions (42%), and kidney disease (35%).
Content for the guides used in the questionnaires and interviews were developed from a recent systemic review analyzing perspectives and experiences of patients dealing with morbidity related to SLE.2
Themes that were identified as important to these adolescents were:
1. Identity (misrepresented self, heightened self-consciousness, sense of isolation)
2. Restriction of major life decisions (narrowed career options, threat to parenthood)
3. Confusion and Uncertainty regarding diagnosis
4. Feelings related to resentment of necessity for long-term treatment, that may potentially restrict ambition and goals
5. Interest in acquiring coping strategies to gain resilience
In this group, kidney disease, neurologic SLE, and hematologic disease were perceived by patients as the most cumbersome SLE disease manifestations.
Summary and Clinical Applicability
For younger patients with SLE, a desire to independently manage SLE disease exists, however some patients expressed doubts on their ability to self-manage medication. Strategies to increase confidence in self-managing disease include ongoing active involvement in health decision making and receiving culturally appropriate information.
Limitations and Disclosures
Response rates and attendance in the study groups were low. The majority of young adults included were female and of Asian descent thus limiting generalizability to other groups.
1. Tunnicliffe DJ, Singh-grewal D, Chaitow J, et al. Lupus Means Sacrifices: Perspectives of Adolescents and Young Adults With Systemic Lupus Erythematosus. Arthritis Care Res (Hoboken). 2016;68(6):828-37.
2. Sutanto B, Singh-Grewal D, McNeil HP, O’Neill S, Craig JC, Jones J, et al. Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken) 2013;65:1752–65.