Healthcare and research priorities of adolescents and young adults with systemic lupus erythematosus: A mixed-methods study

Journal of Rheumatology

Volumn 44, Issue 4, 2017, Pages 444-451

  Tunnicliffe, David J ^a,b   Singh Grewal, Davinder ^c,d,e   Craig, Jonathan C ^a,b   Howell, Martin ^a,b   Tugwell, Peter ^f   Mackie, Fiona ^d,e   Lin, Ming Wei ^c,g   O'Neill, Sean G ^h   Ralph, Angelique F ^a,b   Tong, Allison ^a,b  

^a UNIVERSITY OF SYDNEY   (Australia)

^b CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^c UNIVERSITY OF SYDNEY   (Australia)

^d SYDNEY CHILDREN'S HOSPITAL   (Australia)

^e UNIVERSITY OF NEW SOUTH WALES   (Australia)

^f UNIVERSITY OF OTTAWA   (Canada)

^g WESTMEAD HOSPITAL   (Australia)

^h LIVERPOOL HOSPITAL   (Australia)

Author keywords

HEALTH PRIORITIES; PATIENTS; QUALITATIVE RESEARCH; SYSTEMIC LUPUS ERYTHEMATOSUS ADOLESCENT

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; AWARENESS; CLINICAL ARTICLE; COMORBIDITY; CONTROLLED STUDY; COST EFFECTIVENESS ANALYSIS; DISEASE SEVERITY; EMPATHY; FEMALE; HEALTH CARE ACCESS; HEALTH CARE COST; HEALTH CARE PLANNING; HEALTH CARE QUALITY; HIGH RISK PATIENT; HUMAN; LIFESTYLE; MALE; MENTAL HEALTH; MOTIVATION; OCCUPATIONAL THERAPY; PATIENT DECISION MAKING; PATIENT EDUCATION; PHYSIOTHERAPY; PSYCHOSOCIAL CARE; QUALITY OF LIFE; RESEARCH PRIORITY; SOCIAL ACCEPTANCE; SYSTEMIC LUPUS ERYTHEMATOSUS; WELLBEING; ATTITUDE TO HEALTH; AUSTRALIA; COST BENEFIT ANALYSIS; INFORMATION PROCESSING; PSYCHOLOGY; QUALITATIVE RESEARCH; RESEARCH; YOUNG ADULT;

ADOLESCENT; ADULT; AUSTRALIA; COST-BENEFIT ANALYSIS; FEMALE; FOCUS GROUPS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; MENTAL HEALTH; QUALITATIVE RESEARCH; QUALITY OF LIFE; RESEARCH; YOUNG ADULT;

EID: 85017004190     PISSN: 0315162X     EISSN: 14992752     Source Type: Journal    
DOI: 10.3899/jrheum.160720     Document Type: Article

References (50)

1. Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch. Res Involv Engage 2015;1:2.
2. World Health Organization. The WHO strategy on research for health. [Internet. Accessed January 16, 2017.] Available from: www.who.int/phi/WHO-Strategy-on-research-for-health.pdf?ua=1
3. Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. Br Med J 1998;316:463-6.
4. Howrey BT, Thompson BL, Borkan J, Kennedy LB, Hughes LS, Johnson BH, et al. Partnering with patients, families, and communities. Fam Med 2015;47:604-11.
5. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. Lancet 2014;383:156-65.
6. Buchbinder R, Maher C, Harris IA. Setting the research agenda for improving health care in musculoskeletal disorders. Nat Rev Rheumatol 2015;11:597-605.
7. Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic review of involving patients in the planning and development of health care. BMJ 2002;325:1263.
8. Crowe S, Regan S. Description of a process and workshop to set research priorities in hip and knee replacement for osteoarthritis. [Internet. Accessed January 16, 2017.]. Oxford, UK: James Lind Alliance, University of Oxford, 2014. Available from: www.jla.nihr.ac.uk/priority-setting-partnerships/hip-and-kneereplacement- for-osteoarthritis/downloads/Final-Workshop- Report.pdf
9. Kirwan JR, Newman S, Tugwell PS, Wells GA. Patient perspective on outcomes in rheumatology - a position paper for OMERACT 9. J Rheumatol 2009;36:2067-70.
10. Strauss VY, Carter P, Ong BN, Bedson J, Jordan KP, Jinks C, et al; Arthritis Research UK Research Users' Group. Public priorities for joint pain research: results from a general population survey. Rheumatology 2012;51:2075-82.
11. Tallon D, Chard J, Dieppe P. Exploring the priorities of patients with osteoarthritis of the knee. Arthritis Care Res 2000;13:312-9.
12. Brunner HI, Gladman DD, Ibañez D, Urowitz MD, Silverman ED. Difference in disease features between childhood-onset and adult-onset systemic lupus erythematosus. Arthritis Rheum 2008;58:556-62.
13. Mina R, Brunner HI. Pediatric lupus - are there differences in presentation, genetics, response to therapy, and damage accrual compared with adult lupus? Rheum Dis Clin North Am 2010; 36:53-80, vii-viii.
14. Lawson EF, Hersh AO, Trupin L, von Scheven E, Okumura MJ, Yazdany J, et al. Educational and vocational outcomes of adults with childhood- and adult-onset systemic lupus erythematosus: nine years of followup. Arthritis Care Res 2014;66:717-24.
15. Robinson D Jr, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R, et al. Impact of systemic lupus erythematosus on health, family, and work: the patient perspective. Arthritis Care Res 2010;62:266-73.
16. Felsenstein S, Reiff AO, Ramanathan A. Transition of care and health-related outcomes in pediatric-onset systemic lupus erythematosus. Arthritis Care Res 2015;67:1521-8.
17. Falcini F, Nacci F. Review: systemic lupus erythematosus in the young: the importance of a transition clinic. Lupus 2007;16:613-7.
18. Lingard L, Albert M, Levinson W. Grounded theory, mixed methods, and action research. BMJ 2008;337: a567.
19. Lambert SD, Loiselle CG. Combining individual interviews and focus groups to enhance data richness. J Adv Nurs 2008;62:228-37.
20. Frey JH, Fontana A. The group interview in social research. Soc Sci J 1991;28:175-87.
21. Colucci E. "Focus groups can be fun": the use of activity-oriented questions in focus group discussions. Qual Health Res 2007;17:1422-33.
22. Kruegar R. Developing questions for focus groups 3. Thousand Oaks: Sage; 1998.
23. Guyatt G, Rennie D. Users' guides to the medical literature: a manual for evidence-based clinical practice. Chicago: AMA Press; 2002.
24. Morgan TA, Watson L, McCann LJ, Beresford MW. Children and adolescents with SLE: not just little adults. Lupus 2013;22:1309-19.
25. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2014;17:637-50.
26. Liamputtong P. Qualitative research methods, third edition. Victoria: Oxford University Press; 2009.
27. Giacomini MK, Cook DJ. Users' guides to the medical literature: XXIII. Qualitative research in health care B. What are the results and how do they help me care for my patients? Evidence-Based Medicine Working Group. JAMA 2000;284:478-82.
28. Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ 2000;320:114-6.
29. Bertsias G, Ioannidis JP, Boletis J, Bombardieri S, Cervera R, Dostal C, et al; Task Force of the EULAR Standing Committee for International Clinical Studies Including Therapeutics. EULAR recommendations for the management of systemic lupus erythematosus. Report of a Task Force of the EULAR Standing Committee for International Clinical Studies Including Therapeutics. Ann Rheum Dis 2008;67:195-205.
30. van Vollenhoven RF, Mosca M, Bertsias G, Isenberg D, Kuhn A, Lerstrøm K, et al. Treat-to-target in systemic lupus erythematosus: recommendations from an international task force. Ann Rheum Dis 2014;73:958-67.
31. Gladman DD, Urowitz MB. University of Toronto Lupus Clinic turns 40. J Rheumatol 2012;39:1074-7.
32. Golder V, Connelly K, Staples M, Morand E, Hoi A. Association of Asian ethnicity with disease activity in SLE: an observational study from the Monash Lupus Clinic. Lupus 2013;22:1425-30.
33. Hersh AO, Pang S, Curran ML, Milojevic DS, von Scheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol Online J 2009;7:13.
34. Johnson MK, Crosnoe R, Elder GH Jr. Insights on adolescence from a life course perspective. J Res Adolesc 2011;21:273-80.
35. Tunnicliffe DJ, Singh-Grewal D, Chaitow J, Mackie F, Manolios N, Lin MW, et al. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus erythematosus. Arthritis Care Res 2016;68:828-37.
36. Moorthy L, Peterson MG, Hassett A, Baratelli M, Lehman TJ. Impact of lupus on school attendance and performance. Lupus 2010;19:620-7.
37. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548-53.
38. Nikpour M, Bridge JA, Richter S. A systematic review of prevalence, disease characteristics and management of systemic lupus erythematosus in Australia: identifying areas of unmet need. Intern Med J 2014;44:1170-9.
39. Eleftheriou D, Isenberg DA, Wedderburn LR, Ioannou Y. The coming of age of adolescent rheumatology. Nat Rev Rheumatol 2014;10:187-93.
40. U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases. The future directions of lupus research. [Internet. Accessed January 12, 2017.] Available from: www.niams.nih.gov/ About-Us/Mission-and-Purpose/lupus-plan.pdf
41. Ota S, Cron RQ, Schanberg LE, O'Neil K, Mellins ED, Fuhlbrigge RC, et al. Research priorities in pediatric rheumatology: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) consensus. Pediatr Rheumatol Online J 2008;6:5.
42. Partridge N, Scadding J. The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. Lancet 2004;364:1923-4.
43. Jaramillo A, Welch VA, Ueffing E, Gruen RL, Bragge P, Lyddiatt A, et al. Prevention and self-management interventions are top priorities for osteoarthritis systematic reviews. J Clin Epidemiol 2013;66:503-10.e4.
44. Ward V, Hill J, Hale C, Bird H, Quinn H, Thorpe R. Patient priorities of care in rheumatology outpatient clinics: a qualitative study. Musculoskeletal Care 2007;5:216-28.
45. Tong A, Jones J, Speerin R, Filocamo K, Chaitow J, Singh-Grewal D. Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study. J Clin Rheumatol 2013; 19:234-40.
46. 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 2013;65:1752-65.
47. Kitzinger J. Qualitative research. Introducing focus groups. BMJ 1995;311:299-302.
48. Connelly K, Morand E, Hoi A. Asian ethnicity in systemic lupus erythematosus: an Australian perspective. Intern Med J 2013;43:618-24.
49. Mackie FE, Kainer G, Adib N, Boros C, Elliott EJ, Fahy R, et al. The national incidence and clinical picture of SLE in children in Australia - a report from the Australian Paediatric Surveillance Unit. Lupus 2015;24:66-73.
50. Pineles D, Valente A, Warren B, Peterson MG, Lehman TJ, Moorthy LN. Worldwide incidence and prevalence of pediatric onset systemic lupus erythematosus. Lupus 2011;20:1187-92.