title: Healthcare and Research Priorities of Adolescents and Young Adults with Systemic Lupus Erythematosus: A Mixed-methods Study.
abstract: Managing juvenile-onset systemic lupus erythematosus (SLE) is particularly challenging. The disease may be severe, adolescent patients have complex medical and psychosocial needs, and patients must navigate the transition to adult services. To inform patient-centered care, we aimed to identify the healthcare and research priorities of young patients with SLE and describe the reasons underpinning their priorities.
  
  
  
  Face-to-face, semistructured interviews and focus groups were conducted with patients with SLE, aged from 14 to 26 years, from 5 centers in Australia. For each of the 5 allocation exercises, participants allocated 10 votes to (1) research topics; research questions on (2) medical management, (3) prevention and diagnosis, (4) lifestyle and psychosocial; and (5) healthcare specialties, and discussed the reasons for their choices. Descriptive statistics were calculated for votes and qualitative data were analyzed thematically.
  
  
  
  The 26 participants prioritized research that alleviated the psychological burden of SLE. They allocated their votes toward medical and mental health specialties in the management of SLE, while fewer votes were given to physiotherapy/occupational therapy and dietetics. The following 7 themes underpinned the participants' priorities: improving service shortfalls, strengthening well-being, ensuring cost efficiency, minimizing family/community burden, severity of comorbidity or complications, reducing lifestyle disruption, and fulfilling future goals.
  
  
  
  Young patients with SLE value comprehensive care with greater coordination among specialties. They prioritized research focused on alleviating poor psychological outcomes. The healthcare and research agenda for patients with SLE should include everyone involved, to ensure that the agenda aligns with patient priorities, needs, and values.
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada. david.tunnicliffe@health.nsw.gov.au.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead. david.tunnicliffe@health.nsw.gov.au.
authors.forename: David J
authors.initials: DJ
authors.lastname: Tunnicliffe
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Davinder
authors.initials: D
authors.lastname: Singh-Grewal
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Martin
authors.initials: M
authors.lastname: Howell
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Peter
authors.initials: P
authors.lastname: Tugwell
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Fiona
authors.initials: F
authors.lastname: Mackie
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Ming-Wei
authors.initials: MW
authors.lastname: Lin
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Sean G
authors.initials: SG
authors.lastname: O'Neill
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Angelique F
authors.initials: AF
authors.lastname: Ralph
authors.affiliation: From the Sydney School of Public Health, and Sydney Medical School, The University of Sydney; Centre for Kidney Research, The Children's Hospital at Westmead; Department of Rheumatology, The Sydney Children's Hospital Network; Faculty of Medicine, and School of Women's and Children's Health, The University of New South Wales; Department of Nephrology, Sydney Children's Hospital Randwick; Department of Immunology, Westmead Hospital; Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research, Sydney, Australia; Centre for Global Health, University of Ottawa, Ottawa, Ontario, Canada.|D.J. Tunnicliffe, PhD candidate, MIPH, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; D. Singh-Grewal, PhD, Clinical Senior Lecturer, Pediatric Rheumatologist, Sydney Medical School, The University of Sydney, and Department of Rheumatology, The Sydney Children's Hospital Network, and Faculty of Medicine, The University of New South Wales; J.C. Craig, PhD, Professor of Clinical Epidemiology, Pediatric Nephrologist, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; M. Howell, PhD, Research Associate, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; P. Tugwell, MD, Director, Centre for Global Health, University of Ottawa; F. Mackie, PhD, Conjoint Senior Lecturer, Pediatric Nephrologist, School of Women's and Children's Health, The University of New South Wales, and Department of Nephrology, Sydney Children's Hospital Randwick; M.W. Lin, MBBS, Clinical lecturer, Immunologist, Sydney Medical School, The University of Sydney, and Department of Immunology, Westmead Hospital; S.G. O'Neill, PhD, FRACP, Rheumatologist, Department of Rheumatology, Liverpool Hospital, South Western Sydney Clinical School, University of New South Wales, Ingham Institute for Applied Medical Research; A.F. Ralph, PhD Candidate, BPsych(Hons), Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead; A. Tong, PhD, National Health Medical Research Council Career Development Fellow, Sydney School of Public Health, The University of Sydney, and the Centre for Kidney Research, The Children's Hospital at Westmead.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D003362:Cost-Benefit Analysis; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008603:Mental Health; D036301:Qualitative Research; D011788:Quality of Life; D012106:Research; D055815:Young Adult
keywords: ADOLESCENT; HEALTH PRIORITIES; PATIENTS; QUALITATIVE RESEARCH; SYSTEMIC LUPUS ERYTHEMATOSUS