NDLI: How to optimize the design and implementation of risk prediction tools: focus group with patients with IgA nephropathy

Content Provider	Springer Nature : BioMed Central
Author	Gagliardi, Anna R. Reich, Heather N. Cattran, Daniel C. Barbour, Sean J.
Abstract	Background IgA nephropathy (IgAN) is a common type of chronic immune-mediated kidney disease with variable risk of progression to end-stage kidney disease. Risk stratification helps clinicians weight the potential risks and benefits of immunosuppressive therapy for individual patients, and can inform patient-centred communication. No prior research examined barriers of risk predication tools (RPT) specific to IgAN. The purpose of this study was to explore determinants (facilitators, barriers) of RPT use from the patient perspective. Methods We conducted a single focus group with English-speaking adults aged 18 or older with biopsy-proven IgAN. We asked about how they would use an IgAN RPT, and how to improve its design and implementation. We analyzed the transcript using constant comparison to inductively derive themes, and complied with qualitative research reporting criteria. Results The 5 participants were Caucasian men who varied in age from 35 to 55. The glomerular filtration rate ranged from 29 to 71 mL/min/1.73m2, and proteinuria ranged from 0.36 to 1.41 g/d. Participants identified both benefits and harms of the risk score. They said physicians should first ask patients for permission to use it. To make it more useful, participants offered suggestions to enhance RTP design: visual display, information on how to interpret the risk score, risk categories, health implications, modifiable risk factors, multiple scenarios, and comparison with similar patients. They offered additional suggestions to enhance RPT implementation: it should not replace patient-provider discussion, it should be accompanied by self-management education so that patients can take an active role in their health. Participants appreciated information from members of the multidisciplinary team in addition to physicians. Participants also said that physicians should monitor patient emotions or concerns on an ongoing basis. Conclusions Patients with IgAN identified numerous ways to enhance the design and use of an RPT. Others could use this information to design and implement RPTs for patients with other conditions, but should employ user-centred design to develop RPTs that address patient preferences.
Related Links	https://bmcmedinformdecismak.biomedcentral.com/counter/pdf/10.1186/s12911-020-01253-4.pdf
Ending Page	11
Page Count	11
Starting Page	1
File Format	HTM / HTML
ISSN	14726947
DOI	10.1186/s12911-020-01253-4
Journal	BMC Medical Informatics and Decision Making
Issue Number	1
Volume Number	20
Language	English
Publisher	BioMed Central
Publisher Date	2020-09-16
Access Restriction	Open
Subject Keyword	Health Informatics Information Systems and Communication Service Management of Computing and Information Systems Chronic kidney disease IgA nephropathy Patient-centred care Patient-provider communication Risk prediction calculator User-centred design Qualitative research
Content Type	Text
Resource Type	Article
Subject	Health Informatics Computer Science Applications Health Policy
Journal Impact Factor	3.3/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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