'It is good to have a target in mind': qualitative views of patients and parents informing a treat to target clinical trial in juvenile-onset systemic lupus erythematosus.
juvenile-onset systemic lupus erythematosus
patient perspectives
qualitative
treat to target
Journal
Rheumatology (Oxford, England)
ISSN: 1462-0332
Titre abrégé: Rheumatology (Oxford)
Pays: England
ID NLM: 100883501
Informations de publication
Date de publication:
01 12 2021
01 12 2021
Historique:
received:
01
10
2020
revised:
05
02
2021
pubmed:
26
2
2021
medline:
30
12
2021
entrez:
25
2
2021
Statut:
ppublish
Résumé
We sought to explore patient and parental views on treatment targets, outcome measures and study designs being considered for a future JSLE treat-to-target (T2T) study. We conducted topic-guided, semistructured interviews with JSLE patients and parents and analysed the audio recorded interviews using thematic approaches. Patients and parents differed regarding symptoms they felt would be tolerable, representing 'low disease activity'. Patients often classed symptoms that they had previously experienced, were 'invisible' or had minimal disruption on their life as signs of low disease activity. Parents were more accepting of visible signs but were concerned about potential organ involvement and symptom severity. Overall, patients and parents preferred that children were entirely asymptomatic, with no ongoing treatment side effects. They regarded fatigue as particularly challenging, requiring proper monitoring using a fatigue patient-reported outcome measure. Most families felt that reducing corticosteroids would also be a good treatment target. Overall, families liked the concept of T2T, commenting that it could help to improve disease control, help structure treatment and improve communication with clinicians and treatment compliance. They were concerned that T2T might increase the frequency of hospital visits, thus impacting upon schooling, parental employment and finances. Families made suggestions on how to modify the future trial design to mitigate such effects. This study provides guidance from patients and parents on T2T targets and study designs. Complementary quantitative studies assessing the achievability and impact of different targets (e.g. lupus low disease activity state or remission) are now warranted to inform an international consensus process to develop treatment targets.
Identifiants
pubmed: 33629109
pii: 6149321
doi: 10.1093/rheumatology/keab173
pmc: PMC8645274
doi:
Types de publication
Clinical Trial
Journal Article
Multicenter Study
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
5630-5641Subventions
Organisme : Clinical Seed Corn Competitive Fund
Organisme : University of Liverpool
ID : JXR10500 and JXR12309
Organisme : Faculty of Health and Life Sciences
Organisme : Wellcome Trust
Pays : United Kingdom
Organisme : Wellcome Trust Institutional Strategic Support Fund
ID : 204822/Z/16/Z
Organisme : Versus Arthritis
ID : ARUK-20621
Pays : United Kingdom
Informations de copyright
© The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology.
Références
J Clin Rheumatol. 2021 Sep 1;27(6):232-238
pubmed: 31985721
Rheum Dis Clin North Am. 2010 Feb;36(1):53-80, vii-viii
pubmed: 20202591
Lupus. 2016 Dec;25(14):1542-1550
pubmed: 27147622
Arthritis Rheum. 2009 Jan 15;61(1):13-20
pubmed: 19116979
Arthritis Rheumatol. 2021 Jan;73(1):9-11
pubmed: 32741138
Ann Rheum Dis. 2017 Mar;76(3):554-561
pubmed: 27884822
Arthritis Res Ther. 2017 Mar 20;19(1):62
pubmed: 28320433
Arthritis Care Res (Hoboken). 2017 Jul;69(7):997-1003
pubmed: 27696791
Arthritis Care Res (Hoboken). 2016 Jun;68(6):828-37
pubmed: 26414860
Lupus Sci Med. 2018 Feb 27;5(1):e000234
pubmed: 29531772
Ambul Pediatr. 2003 Nov-Dec;3(6):329-41
pubmed: 14616041
Ann Rheum Dis. 2016 Sep;75(9):1615-21
pubmed: 26458737
Acad Med. 2014 Sep;89(9):1245-51
pubmed: 24979285
J Pediatr. 2008 Apr;152(4):550-6
pubmed: 18346514
J Rheumatol. 2004 Dec;31(12):2494-500
pubmed: 15570657
Ann Rheum Dis. 2018 Jan;77(1):104-110
pubmed: 28970217
Arthritis Rheumatol. 2018 Nov;70(11):1790-1795
pubmed: 29806142
Lupus. 2007;16(8):550-5
pubmed: 17711887
Arthritis Rheum. 2002 Mar;46(3):714-25
pubmed: 11920407
Lupus. 2004;13(4):234-40
pubmed: 15176658
Arthritis Rheum. 2008 Feb;58(2):556-62
pubmed: 18240232
Pediatr Rheumatol Online J. 2018 Sep 10;16(1):56
pubmed: 30201026
RMD Open. 2019 Jun 11;5(2):e000916
pubmed: 31275608
Semin Arthritis Rheum. 2019 Oct;49(2):267-272
pubmed: 31235075
Arthritis Rheum. 2006 Aug;54(8):2550-7
pubmed: 16868977
Ann Rheum Dis. 2014 Jun;73(6):958-67
pubmed: 24739325
J Health Psychol. 2009 May;14(4):611-22
pubmed: 19383661
Lupus. 2012 Nov;21(13):1450-4
pubmed: 23093477
Arthritis Rheum. 2007 Oct 15;57(7):1165-73
pubmed: 17907234
Semin Arthritis Rheum. 2018 Dec;48(3):467-474
pubmed: 29555348
Ann Rheum Dis. 2018 Jun;77(6):819-828
pubmed: 29643108
Ann Rheum Dis. 2017 Mar;76(3):543-546
pubmed: 27474764
Arthritis Res Ther. 2017 Nov 10;19(1):247
pubmed: 29126432
RMD Open. 2019 May 23;5(1):e000955
pubmed: 31245057
Lupus. 2019 Apr;28(5):667-674
pubmed: 30943853
Lupus. 2008 Apr;17(4):314-22
pubmed: 18413413
Ann Rheum Dis. 2010 Apr;69(4):629-30
pubmed: 20237122
Nat Rev Rheumatol. 2014 Sep;10(9):567-71
pubmed: 25048762
J Rheumatol. 2009 Jul;36(7):1536-45
pubmed: 19487266
Arthritis Rheum. 2012 Jul;64(7):2356-65
pubmed: 22294381
Rheumatology (Oxford). 2017 Jan;56(1):121-128
pubmed: 27803306