Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus.

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Tytuł:: Patient Perspective on Using Digital Resources to Address Unmet Needs in Systemic Lupus Erythematosus.
Autorzy:: Ra JH; Washington University School of Medicine, St. Louis, Missouri.
Leung J; Saint Louis University, St. Louis, Missouri.
Baker EA; Saint Louis University, St. Louis, Missouri.
Kim AHJ; Washington University School of Medicine, St. Louis, Missouri.
Źródło:: Arthritis care & research [Arthritis Care Res (Hoboken)] 2021 Nov; Vol. 73 (11), pp. 1568-1576. Date of Electronic Publication: 2021 Sep 08.
Typ publikacji:: Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't
Język:: English
Imprint Name(s):: Original Publication: Hoboken, NJ : John Wiley & Sons
MeSH Terms:: Health Knowledge, Attitudes, Practice*
Health Resources*
Health Services Needs and Demand*
Internet Use*
Patient Education as Topic*
Social Support*
Lupus Erythematosus, Systemic/*therapy
Adult ; Attitude to Computers ; Female ; Humans ; Interviews as Topic ; Lupus Erythematosus, Systemic/diagnosis ; Lupus Erythematosus, Systemic/psychology ; Middle Aged ; Needs Assessment ; Patient Satisfaction ; Qualitative Research ; Washington ; Young Adult
References:: Lupus. 2011 Oct;20(11):1117-25. (PMID: 21828159)
Am J Prev Med. 2016 Nov;51(5):843-851. (PMID: 27745684)
Arthritis Care Res (Hoboken). 2014 May;66(5):778-82. (PMID: 24115761)
Behav Modif. 2002 Jan;26(1):103-16. (PMID: 11799651)
JMIR Res Protoc. 2016 May 30;5(2):e44. (PMID: 27240666)
Arthritis Care Res. 1991 Dec;4(4):158-67. (PMID: 11188603)
Lupus. 2002;11(8):478-84. (PMID: 12220101)
J Rheumatol. 2010 Sep;37(9):1944-52. (PMID: 20595280)
Soc Work Health Care. 2003;37(4):57-72. (PMID: 14620904)
Arthritis Rheum. 2008 Jul 15;59(7):1009-17. (PMID: 18576310)
Behav Med. 2009 Spring;35(1):5-13. (PMID: 19297299)
Arthritis Care Res. 1993 Jun;6(2):97-103. (PMID: 8399433)
Int J Obes Relat Metab Disord. 2002 Sep;26(9):1254-60. (PMID: 12187404)
ACR Open Rheumatol. 2019 May;1(3):135-144. (PMID: 31773100)
Soc Work Health Care. 2014;53(5):435-45. (PMID: 24835088)
Ann Rheum Dis. 1989 Jun;48(6):455-60. (PMID: 2742400)
ANS Adv Nurs Sci. 2003 Oct-Dec;26(4):299-306. (PMID: 14674578)
Lupus. 2014 Feb;23(2):176-82. (PMID: 24335012)
Rheumatology (Oxford). 2001 Jun;40(6):645-51. (PMID: 11426021)
Arthritis Rheum. 2013 Mar;65(3):753-63. (PMID: 23203603)
Lupus. 2013 Jan;22(1):99-105. (PMID: 23042822)
Anthropol Med. 2009 Apr 1;16(1):1-12. (PMID: 27269637)
BMJ Open. 2013 Aug 07;3(8):. (PMID: 23929922)
Soc Sci Med. 2007 May;64(9):1853-62. (PMID: 17328998)
J Med Internet Res. 2004 Nov 10;6(4):e40. (PMID: 15631964)
Arthritis Rheum. 2005 Dec 15;53(6):950-7. (PMID: 16342084)
J Health Psychol. 2014 May;19(5):689-96. (PMID: 23479300)
Curr Rheumatol Rep. 2013 Dec;15(12):380. (PMID: 24178589)
Dtsch Arztebl Int. 2015 Jun 19;112(25):423-32. (PMID: 26179016)
J Med Internet Res. 2015 Jul 07;17(7):e167. (PMID: 26154022)
Medicine (Baltimore). 1996 Mar;75(2):88-98. (PMID: 8606630)
Pain Res Manag. 2016;2016:8714785. (PMID: 27445632)
Lupus. 2012 Dec;21(14):1586-93. (PMID: 22936126)
ACR Open Rheumatol. 2020 Mar;2(3):147-157. (PMID: 32037683)
Grant Information:: Lawren H. Daltroy Health Professional Preceptorship Award; Rheumatology Research Foundation Medical Graduate Student Preceptorship Award; P30 AR073752 United States AR NIAMS NIH HHS; Washington University Summer Undergraduate Research Award; UL1 TR002345 United States TR NCATS NIH HHS; Rheumatology Research Foundation; Gina M. Finzi Summer Student Fellowship by Lupus Foundation of America
Entry Date(s):: Date Created: 20200803 Date Completed: 20211115 Latest Revision: 20221005
Update Code:: 20240104
PubMed Central ID:: PMC7909604
DOI:: 10.1002/acr.24399
PMID:: 32741146
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Objective: The clinical variability of systemic lupus erythematosus (SLE) caused by the unpredictability of flares contributes to patients experiencing a diminished sense of social support. Digital health interventions (DHIs) have the potential to improve patients' social support but have yet to be studied extensively in SLE. Our objective was to assess general and SLE-specific internet usage as well as specific suggestions for SLE-related digital resources and tools among patients with SLE at the Washington University Lupus Clinic.
Methods: Fifty-six participants were recruited from the Washington University Lupus Clinic. Ten-minute structured interviews consisting of multiple choice and open-ended questions were conducted. A descriptive statistical analysis was conducted with the quantitative data, while the qualitative data were analyzed using an open coding approach.
Results: Nearly all respondents indicated having access to the internet (98.2%). Eighty percent currently use the internet for their SLE. The qualitative data indicate that patients with SLE use the internet for understanding flares and changes in their symptoms and/or laboratory results, want an increased variety of SLE information online, have a desire to exchange personal experiences and knowledge of SLE with others, and desire increased diversity in the methods of delivering digital SLE information.
Conclusion: Our findings support the continued use of DHIs for patients with SLE. We believe that these findings will aid the future development of DHIs tailored to patients with SLE.
(© 2020, American College of Rheumatology.)

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