Lupus Diagnosis Means Sacrifices for Youth

Teens and young adults with systemic lupus erythematosus view the disease as constraining their choices and forcing them to make sacrifices, new research finds.  A qualitative study of lupus patients at Australian hospitals, all diagnosed before age 18, reveals uncertainty and resentment in response to the disease's global effects. Young patients could benefit from increased social support - perhaps in moderated online forums - and from transition clinics to ease the move from pediatric to adult care, researchers report in the Sept. 28 online issue of Arthritis Care & Research.[[{"type":"media","view_mode":"media_crop","fid":"41913","attributes":{"alt":"©DragonImages/Shutterstock.com","class":"media-image media-image-right","id":"media_crop_6513439039699","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"4491","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; line-height: 20.0063px; float: right;","title":" ","typeof":"foaf:Image"}}]] "Our findings confirm a critical clinical practice gap – the provision of social support networks to improve optimism and empowerment in adolescents and young adults with (systemic lupus erythematosus)," the researchers wrote.  The emotional and psychological strain of lupus is well-known. The disease carries a particularly heavy economic burden, given that it often strikes in the productive years of early or middle adulthood, according to a 2012 review of research published in the journal Best Practice & Research Clinical Rheumatology. Career worries were echoed in the new study, with teens and young adults describing narrowed options and fear of discrimination. "If I ever go for a job, like, it's a very high chance that they might say no because there’s a high chance that you might have an issue with your health," one 20-year-old patient said in the study. "That's just the ugly truth." Though some quantitative research on young lupus patients has found lowered self-esteem and strong feelings of uncertainty and stigma, David Tunnicliffe of The Children's Hospital at Westmead in Australia and his colleagues wanted to conduct qualitative research to get a deeper look at typical patient concerns. The researchers recruited 26 14- to 26-year-old people with systemic lupus erythematosus from five Australian hospitals. Each patient was offered the chance to share their thoughts about the disease in either a focus group or a one-on-one semi-structured interview.  Five major themes emerged from these discussions. The first centered on the ways lupus threatened young peoples' sense of self. Many felt that their symptoms made them perceive themselves as sick and incapacitated, the researchers reported. Others felt stereotyped as sick by outsiders. Isolation was another common complaint.  Many felt self-conscious, often because of side effects from treatment.  "It brought a lot of insecurity, since you gain a lot of weight with the prednisone," one 18-year-old said.  In a second theme, patients felt that lupus restricted their life choices, particularly their career options and chance of having children. A third theme was confusion and uncertainty, both over the past (frustration over delayed diagnosis, for example) and for the future (when the next flare-up might occur, or how to handle the transition to adult care).  The fourth theme was resentment at the need for long-term treatment. One patient reported feeling like a "guinea pig" trying new drug combinations. "For me, lupus means sacrifices," said another.  However, the final theme that emerged was one of resilience and coping. Many young patients reported a desire for independence and a feeling that they were developing self-reliance. Coping skills included leaning on family, friends and trusted doctors for support. Some reported feeling lucky that their lupus was not more severe.  â€‹Moderated message boards and forums are one option for alleviating the stigma and isolation for young lupus patients, Tunnicliffe and his colleagues wrote. Doctors and specialist nurses may also help by providing patients with clear information on lupus and lupus-related services; some young people in the study reported that their doctors communicated with their parents first, leaving them out of the loop in their own treatment. Another route to social support - and to improved care - is the establishment of transition clinics, the authors wrote. These clinics, involving both pediatric and adult staff, can support teens and young adults and help them take the reins in their own care. Transition clinics "provide the opportunity for adolescents to achieve independence, develop rapport with the new specialist, establish support networks outside the family, and receive relevant education that address specific health concerns," the researchers wrote. 

References:

Tunnicliffe, D, Singh-Grewal D, et al.

Lupus means sacrifices" - the perspectives of adolescents and young adult with systemic lupus erythematosus.

Arthritis Care & Research

2015; Accepted Article, doi: 10.1002/acr.22749. Panopalis P, Clarke AE, Yelin E.

The economic burden of systemic lupus erythematosus

.

Best Pract Res Clin Rheumatol.

2012 Oct;26(5):695-704. doi: 10.1016/j.berh.2012.08.006.