What are the Unmet Needs and Most Relevant Treatment Outcomes According to Patients with Inflammatory Bowel Disease? A Qualitative Patient Preference Study.
Inflammatory bowel disease
centric decision
making
patient
qualitative patient preference study
Journal
Journal of Crohn's & colitis
ISSN: 1876-4479
Titre abrégé: J Crohns Colitis
Pays: England
ID NLM: 101318676
Informations de publication
Date de publication:
03 Apr 2023
03 Apr 2023
Historique:
medline:
5
4
2023
pubmed:
28
9
2022
entrez:
27
9
2022
Statut:
ppublish
Résumé
As more therapeutic options with their own characteristics become available for inflammatory bowel disease [IBD], drug development and individual treatment decision-making needs to be tailored towards patients' preferences and needs. This study aimed to understand patient preferences among IBD patients, and their most important treatment outcomes and unmet needs. This qualitative study consisted of [1] a scoping literature review, [2] two focus group discussions [FGDs] with IBD patients [n = 11] using the nominal group technique, and [3] two expert panel discussions. IBD patients discussed a multitude of unmet needs regarding their symptoms, side-effects, and psychological and social issues for which they would welcome improved outcomes. In particular, IBD patients elaborated on the uncertainties and fears they experienced regarding the possible need for surgery or an ostomy, the effectiveness and onset of action of their medication, and the medication's long-term effects. Furthermore, participants extensively discussed the mental impact of IBD and their need for more psychological guidance, support, and improved information and communication with healthcare workers regarding their disease and emotional wellbeing. The following five characteristics were identified during the attribute grading as most important: prevent surgery, long-term clinical remission, improved quality of life [QoL], occurrence of urgency and improved labour rate. This study suggests that IBD drug development and treatment decision-making are needed to improve IBD symptoms and adverse events that significantly impact IBD patients' QoL. Furthermore, this study underlines patients' need for a shared decision-making process in which their desired treatment outcomes and uncertainties are explicitly discussed and considered.
Sections du résumé
BACKGROUND AND AIMS
OBJECTIVE
As more therapeutic options with their own characteristics become available for inflammatory bowel disease [IBD], drug development and individual treatment decision-making needs to be tailored towards patients' preferences and needs. This study aimed to understand patient preferences among IBD patients, and their most important treatment outcomes and unmet needs.
METHODS
METHODS
This qualitative study consisted of [1] a scoping literature review, [2] two focus group discussions [FGDs] with IBD patients [n = 11] using the nominal group technique, and [3] two expert panel discussions.
RESULTS
RESULTS
IBD patients discussed a multitude of unmet needs regarding their symptoms, side-effects, and psychological and social issues for which they would welcome improved outcomes. In particular, IBD patients elaborated on the uncertainties and fears they experienced regarding the possible need for surgery or an ostomy, the effectiveness and onset of action of their medication, and the medication's long-term effects. Furthermore, participants extensively discussed the mental impact of IBD and their need for more psychological guidance, support, and improved information and communication with healthcare workers regarding their disease and emotional wellbeing. The following five characteristics were identified during the attribute grading as most important: prevent surgery, long-term clinical remission, improved quality of life [QoL], occurrence of urgency and improved labour rate.
CONCLUSIONS
CONCLUSIONS
This study suggests that IBD drug development and treatment decision-making are needed to improve IBD symptoms and adverse events that significantly impact IBD patients' QoL. Furthermore, this study underlines patients' need for a shared decision-making process in which their desired treatment outcomes and uncertainties are explicitly discussed and considered.
Identifiants
pubmed: 36165579
pii: 6722595
doi: 10.1093/ecco-jcc/jjac145
pmc: PMC10069611
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
379-388Informations de copyright
© The Author(s) 2022. Published by Oxford University Press on behalf of European Crohn’s and Colitis Organisation.
Références
J Clin Med. 2022 Apr 27;11(9):
pubmed: 35566580
Value Health. 2011 Jun;14(4):403-13
pubmed: 21669364
Colorectal Dis. 2014 Apr;16(4):285-92
pubmed: 24373392
Front Pharmacol. 2021 Mar 04;12:602112
pubmed: 33746750
Drug Discov Today. 2019 Jan;24(1):57-68
pubmed: 30266656
Rev Recent Clin Trials. 2022 May 31;:
pubmed: 35642115
J Immunol Res. 2019 Dec 1;2019:7247238
pubmed: 31886308
Inflamm Intest Dis. 2018 Nov;3(1):43-51
pubmed: 30505842
Front Pharmacol. 2019 Sep 18;10:1009
pubmed: 31619989
Soc Sci Med. 1997 Mar;44(5):681-92
pubmed: 9032835
Front Med (Lausanne). 2021 Jul 06;8:686165
pubmed: 34295912
BMC Med Res Methodol. 2013 Sep 18;13:117
pubmed: 24047204
Patient. 2020 Feb;13(1):121-136
pubmed: 31840215
Am J Gastroenterol. 2001 May;96(5):1470-9
pubmed: 11374685
Front Public Health. 2021 Feb 05;9:622154
pubmed: 33634069
Fam Med. 2004 Sep;36(8):588-94
pubmed: 15343421
Dis Colon Rectum. 2007 May;50(5):586-97
pubmed: 17380368
N Engl J Med. 2012 Mar 1;366(9):780-1
pubmed: 22375967
BMC Med Inform Decis Mak. 2019 Oct 4;19(1):189
pubmed: 31585538
Inflamm Bowel Dis. 2012 Aug;18(8):1523-30
pubmed: 21987429
World J Gastroenterol. 2019 Mar 7;25(9):1142-1157
pubmed: 30863001
Gastroenterol Nurs. 1996 Mar-Apr;19(2):60-4
pubmed: 8717674
BMJ. 2012 Jan 27;344:e256
pubmed: 22286508
Gut Liver. 2016 May 23;10(3):391-8
pubmed: 26347512
Health Econ. 2012 Jun;21(6):730-41
pubmed: 21557381
Eur J Gastroenterol Hepatol. 2001 May;13(5):567-72
pubmed: 11396538
Am J Gastroenterol. 2018 Jan;113(1):58-71
pubmed: 29206816
Patient. 2021 Jan;14(1):119-128
pubmed: 32856278
Int J Clin Pharm. 2016 Jun;38(3):655-62
pubmed: 26846316
Patient Educ Couns. 2015 Oct;98(10):1172-9
pubmed: 26215573
Patient. 2013;6(4):241-55
pubmed: 24127239
Front Pharmacol. 2019 Dec 03;10:1395
pubmed: 31849657
Curr Opin Gastroenterol. 2021 Jul 1;37(4):357-363
pubmed: 34059604