David J Tunnicliffe1, Davinder Singh-Grewal2, Jeffrey Chaitow3, Fiona Mackie4, Nicholas Manolios5, Ming-Wei Lin5, Sean G O'neill6, Angelique F Ralph1, Jonathan C Craig1, Allison Tong1. 1. University of Sydney and Children's Hospital at Westmead, Sydney, New South Wales, Australia. 2. University of Sydney and Sydney Children's Hospital Network and University of New South Wales, Sydney, New South Wales, Australia. 3. Sydney Children's Hospital Network, Sydney, New South Wales, Australia. 4. Sydney Children's Hospital Network and University of New South Wales, Sydney, New South Wales, Australia. 5. University of Sydney and Westmead Hospital, Sydney, New South Wales, Australia. 6. University of New South Wales and Liverpool Hospital, Sydney, New South Wales, Australia.
Abstract
OBJECTIVE: Disease activity, organ damage, and treatment burden are often substantial in children and adolescents with systemic lupus erythematous (SLE), and the complex interplay among the developing child, parents, and peers makes effective management difficult. We aimed to describe the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset SLE to inform strategies for improving treatment and health outcomes. METHODS: Focus groups and face-to-face semistructured interviews were conducted with 26 patients ages 14-26 years, from 5 Australian hospitals in 2013-2014. Focus groups and interview transcripts were thematically analyzed. RESULTS: Five themes were identified: marring identity (misrepresented self, heightened self-consciousness, sense of isolation), restricting major life decisions (narrowed career options, threat to parenthood), multifaceted confusion and uncertainty (frustration at delayed diagnosis or misdiagnosis, needing age and culturally appropriate information, ambiguity about cause of symptoms, prognostic uncertainty, confronting transition to adult care), resentment of long-term treatment (restricting ambition, animosity toward medication use), and gaining resilience and coping capacities (desire for independence, developing self-reliance, recalibrating perceived disease severity, depending on family and friends, trusting physicians). CONCLUSION: Young patients with SLE perceive they have substantially limited physical and social capacities and restricted personal and career goals. 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 optimize health outcomes of adolescents and young adults with SLE.
OBJECTIVE: Disease activity, organ damage, and treatment burden are often substantial in children and adolescents with systemic lupus erythematous (SLE), and the complex interplay among the developing child, parents, and peers makes effective management difficult. We aimed to describe the experiences and perspectives of adolescents and young adults diagnosed with juvenile-onset SLE to inform strategies for improving treatment and health outcomes. METHODS: Focus groups and face-to-face semistructured interviews were conducted with 26 patients ages 14-26 years, from 5 Australian hospitals in 2013-2014. Focus groups and interview transcripts were thematically analyzed. RESULTS: Five themes were identified: marring identity (misrepresented self, heightened self-consciousness, sense of isolation), restricting major life decisions (narrowed career options, threat to parenthood), multifaceted confusion and uncertainty (frustration at delayed diagnosis or misdiagnosis, needing age and culturally appropriate information, ambiguity about cause of symptoms, prognostic uncertainty, confronting transition to adult care), resentment of long-term treatment (restricting ambition, animosity toward medication use), and gaining resilience and coping capacities (desire for independence, developing self-reliance, recalibrating perceived disease severity, depending on family and friends, trusting physicians). CONCLUSION: Young patients with SLE perceive they have substantially limited physical and social capacities and restricted personal and career goals. 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 optimize health outcomes of adolescents and young adults with SLE.
Authors: Andrea Knight; Amy J Kogon; Matthew B Matheson; Bradley A Warady; Susan L Furth; Stephen R Hooper Journal: J Pediatr Date: 2017-07-19 Impact factor: 4.406
Authors: Kaveh Ardalan; Oluwatosin Adeyemi; Dawn M Wahezi; Anne E Caliendo; Megan L Curran; Jessica Neely; Susan Kim; Colleen K Correll; Emily J Brunner; Andrea M Knight Journal: Arthritis Care Res (Hoboken) Date: 2020-11-27 Impact factor: 4.794
Authors: Allison Tong; Susan Samuel; Michael Zappitelli; Allison Dart; Susan Furth; Allison Eddy; Jaap Groothoff; Nicholas J A Webb; Hui-Kim Yap; Detlef Bockenhauer; Aditi Sinha; Stephen I Alexander; Stuart L Goldstein; Debbie S Gipson; Camilla S Hanson; Nicole Evangelidis; Sally Crowe; Tess Harris; Brenda R Hemmelgarn; Braden Manns; John Gill; Peter Tugwell; Wim Van Biesen; David C Wheeler; Wolfgang C Winkelmayer; Jonathan C Craig Journal: Trials Date: 2016-08-12 Impact factor: 2.279