{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T10:57:30Z","timestamp":1740135450230,"version":"3.37.3"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2020,9,16]],"date-time":"2020-09-16T00:00:00Z","timestamp":1600214400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,9,16]],"date-time":"2020-09-16T00:00:00Z","timestamp":1600214400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n<jats:title>Background<\/jats:title>\n<jats:p>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.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>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.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>The 5 participants were Caucasian men who varied in age from 35 to 55. The glomerular filtration rate ranged from 29 to 71\u2009mL\/min\/1.73m<jats:sup>2<\/jats:sup>, and proteinuria ranged from 0.36 to 1.41\u2009g\/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.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>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.<\/jats:p>\n<\/jats:sec>","DOI":"10.1186\/s12911-020-01253-4","type":"journal-article","created":{"date-parts":[[2020,9,16]],"date-time":"2020-09-16T11:05:01Z","timestamp":1600254301000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["How to optimize the design and implementation of risk prediction tools: focus group with patients with IgA nephropathy"],"prefix":"10.1186","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5721-809X","authenticated-orcid":false,"given":"Anna R.","family":"Gagliardi","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heather N.","family":"Reich","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daniel C.","family":"Cattran","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sean J.","family":"Barbour","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,9,16]]},"reference":[{"key":"1253_CR1","doi-asserted-by":"crossref","first-page":"865","DOI":"10.1053\/j.ajkd.2012.02.326","volume":"59","author":"SJ Barbour","year":"2012","unstructured":"Barbour SJ, Reich HN. Risk stratification of patients with IgA nephropathy. Am J Kidney Dis. 2012;59:865\u201373.","journal-title":"Am J Kidney Dis"},{"key":"1253_CR2","doi-asserted-by":"crossref","first-page":"728","DOI":"10.1053\/ajkd.2001.27689","volume":"38","author":"LP Bartosik","year":"2001","unstructured":"Bartosik LP, Lajoie G, Sugar L, Cattran DC. Predicting progression in IgA nephropathy. Am J Kidney Dis. 2001;38:728\u201335.","journal-title":"Am J Kidney Dis"},{"key":"1253_CR3","doi-asserted-by":"crossref","first-page":"c148","DOI":"10.1159\/000145458","volume":"109","author":"B Mackinnon","year":"2008","unstructured":"Mackinnon B, Fraser EP, Cattran DC, Fox JG, Geddes CC. Validation of the Toronto formula to predict progression in IgA nephropathy. Nephron Clin Pract. 2008;109:c148\u201353.","journal-title":"Nephron Clin Pract"},{"key":"1253_CR4","doi-asserted-by":"crossref","first-page":"e38904","DOI":"10.1371\/journal.pone.0038904","volume":"7","author":"J Xie","year":"2012","unstructured":"Xie J, Kiryluk K, Wang W, Wang Z, Guo S, Shen P, Ren H, Pan X, Chen X, Zhang W, et al. Predicting progression of IgA nephropathy: new clinical progression risk score. PLoS One. 2012;7:e38904.","journal-title":"PLoS One"},{"key":"1253_CR5","doi-asserted-by":"crossref","first-page":"883","DOI":"10.1016\/S0140-6736(98)03563-6","volume":"353","author":"C Pozzi","year":"1999","unstructured":"Pozzi C, Bolasco PG, Fogazzi GB, Andrulli S, Altieri P, Ponticelli C, Locatelli F. Corticosteroids in IgA nephropathy: a randomised controlled trial. Lancet. 1999;353:883\u20137.","journal-title":"Lancet."},{"key":"1253_CR6","doi-asserted-by":"crossref","first-page":"3694","DOI":"10.1093\/ndt\/gfp356","volume":"24","author":"C Manno","year":"2009","unstructured":"Manno C, Torres DD, Rossini M, Pesce F, Schena FP. Randomized controlled clinical trial of corticosteroids plus ACE-inhibitors with long-term follow-up in proteinuric IgA nephropathy. Nephrol Dial Transplant. 2009;24:3694\u2013701.","journal-title":"Nephrol Dial Transplant"},{"key":"1253_CR7","doi-asserted-by":"crossref","first-page":"414","DOI":"10.1093\/ndt\/gfq665","volume":"26","author":"A McGrogan","year":"2011","unstructured":"McGrogan A, Franssen CF, de Vries CS. The incidence of primary glomerulonephritis worldwide: a systematic review of the literature. Nephrol Dial Transplant. 2011;26:414\u201330.","journal-title":"Nephrol Dial Transplant"},{"key":"1253_CR8","doi-asserted-by":"crossref","first-page":"942","DOI":"10.1001\/jamainternmed.2019.0600","volume":"179","author":"SJ Barbour","year":"2019","unstructured":"Barbour SJ, Coppo R, Zhang H, Liu ZH, Suzuki Y, Matsuzaki K, Katafuchi R, Er L, Espino-Hernandez G, Kim SJ, et al. Evaluating a new international risk-prediction tool in IgA nephropathy. JAMA Intern Med. 2019;179:942\u201352.","journal-title":"JAMA Intern Med"},{"key":"1253_CR9","doi-asserted-by":"crossref","first-page":"351","DOI":"10.1177\/1077558712465774","volume":"70","author":"C Rathert","year":"2013","unstructured":"Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev. 2013;70:351\u201379.","journal-title":"Med Care Res Rev"},{"key":"1253_CR10","doi-asserted-by":"crossref","first-page":"e001570","DOI":"10.1136\/bmjopen-2012-001570","volume":"3","author":"C Doyle","year":"2012","unstructured":"Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2012;3:e001570.","journal-title":"BMJ Open"},{"key":"1253_CR11","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1186\/1472-6963-14-271","volume":"14","author":"MK Constand","year":"2014","unstructured":"Constand MK, MacDermid JC, Dal Bello-Haas V, Law M. Scoping review of patient-centered care approaches in healthcare. BMC Health Serv Res. 2014;14:271.","journal-title":"BMC Health Serv Res"},{"key":"1253_CR12","unstructured":"Institute of Medicine. Crossing the Quality Chasm. A New Health System for the 21st Century. Washington DC: National Academy Press, 2001. Available from: http:\/\/www.nationalacademies.org\/hmd\/~\/media\/Files\/Report%20Files\/2001\/Crossing-the-Quality-Chasm\/Quality%20Chasm%202001%20%20report%20brief.pdf Cited February 6 2019."},{"key":"1253_CR13","doi-asserted-by":"crossref","first-page":"1645","DOI":"10.1038\/bjc.2015.409","volume":"113","author":"J Usher-Smith","year":"2015","unstructured":"Usher-Smith J, Emery J, Hamilton W, Giffin SJ, Walter FM. Risk prediction tools for cancer in primary care. Br J Cancer. 2015;113:1645\u201350.","journal-title":"Br J Cancer"},{"key":"1253_CR14","doi-asserted-by":"crossref","first-page":"d7167","DOI":"10.1136\/bmj.d7167","volume":"343","author":"D Noble","year":"2011","unstructured":"Noble D, Mathur R, Dent T, Meads C, Greenhalgh T. Risk models and scores for type 2 diabetes: systematic review. BMJ. 2011;343:d7167.","journal-title":"BMJ."},{"key":"1253_CR15","doi-asserted-by":"crossref","first-page":"98","DOI":"10.1159\/000334436","volume":"15","author":"TH Dent","year":"2012","unstructured":"Dent TH, Wright CF, Stephan BC, Brayne C, Janssens AC. Risk prediction models: a framework for assessment. Public Health Genomics. 2012;15:98\u2013105.","journal-title":"Public Health Genomics"},{"key":"1253_CR16","doi-asserted-by":"crossref","first-page":"691","DOI":"10.1136\/heartjnl-2011-301247","volume":"98","author":"KG Moons","year":"2012","unstructured":"Moons KG, Kengne AP, Grobbee DE, Royston P, Vergouwe Y, Altman DG, Woodward M. Risk prediction models: II. External validation, model updating and impact assessment. Heart. 2012;98:691\u20138.","journal-title":"Heart."},{"key":"1253_CR17","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3109\/10408363.2013.853025","volume":"51","author":"AP Kengne","year":"2014","unstructured":"Kengne AP, Masconi K, Mbanya VN, Lekoubou A, Echouffo-Tcheugui JB, Matsha TE. Risk predictive modeling for diabetes and cardiovascular disease. Crit Rev Clin Lab Sci. 2014;51:1\u201312.","journal-title":"Crit Rev Clin Lab Sci"},{"key":"1253_CR18","doi-asserted-by":"crossref","first-page":"361","DOI":"10.3109\/0284186X.2014.964810","volume":"54","author":"EG Engelhardt","year":"2015","unstructured":"Engelhardt EG, Pieterse AH, van Duijn-Bakker N, Kroep JR, de Haes HC, Smets EM, Stiggelbout AM. Breast cancer specialists\u2019 views on and use of risk prediction models in clinical practice: a mixed methods approach. Acta Oncol. 2015;54:361\u20137.","journal-title":"Acta Oncol"},{"key":"1253_CR19","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1016\/j.jclinepi.2015.09.008","volume":"70","author":"TH Kappen","year":"2016","unstructured":"Kappen TH, van Loon K, Kappen MA, van Wolfswinkel L, Vergouwe Y, van Klei WA, Moons KG, Kalkman CJ. Barriers and facilitators perceived by physicians when using prediction models in practice. J Clin Epidemiol. 2016;70:136\u201345.","journal-title":"J Clin Epidemiol"},{"key":"1253_CR20","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1016\/j.diabres.2014.01.008","volume":"104","author":"T Dhippayom","year":"2014","unstructured":"Dhippayom T, Chaiyakunapruk N, Krass I. How diabetes risk assessment tools are implemented in practice: a systematic review. Diabetes Res Clin Pract. 2014;104:329\u201342.","journal-title":"Diabetes Res Clin Pract"},{"key":"1253_CR21","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1016\/j.jmpt.2013.09.008","volume":"37","author":"L Van Oort","year":"2014","unstructured":"Van Oort L, Verhagen A, Koes B, de vet Anema HR, Heymans M. Evaluation of the usefulness of 2 clinical prediction models in physical therapy: a qualitative process evaluation. J Manip Physiol Ther. 2014;37:334\u201341.","journal-title":"J Manip Physiol Ther"},{"key":"1253_CR22","doi-asserted-by":"crossref","first-page":"694","DOI":"10.1136\/bmj.321.7262.694","volume":"321","author":"M Campbell","year":"2000","unstructured":"Campbell M, Fitzpatrick R, Haines A, Kinmouth AL, Sandercock P, Spiegelhalter D, Tyrer P. Framework for design and evaluation of complex interventions to improve health. BMJ. 2000;321:694\u20136.","journal-title":"BMJ."},{"key":"1253_CR23","doi-asserted-by":"crossref","first-page":"49","DOI":"10.2345\/0899-8205-46.s2.49","volume":"46","author":"T McCurdie","year":"2012","unstructured":"McCurdie T, Taneva S, Casselman M, Yeung M, McDaniel C, Ho W, et al. mHealth consumer apps : the case for user-centered design. Biomed Instrument Technol. 2012;46:49\u201356.","journal-title":"Biomed Instrument Technol"},{"key":"1253_CR24","volume-title":"Qualitative data: an introduction to coding and analysis","author":"C Auerbach","year":"2003","unstructured":"Auerbach C, Silverstein LB. Qualitative data: an introduction to coding and analysis. New York: NYU Press; 2003."},{"key":"1253_CR25","doi-asserted-by":"crossref","first-page":"334","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G","volume":"23","author":"M Sandelowski","year":"2000","unstructured":"Sandelowski M. Focus on research methods: whatever happened to qualitative description? Res Nurs Health. 2000;23:334\u201340.","journal-title":"Res Nurs Health"},{"key":"1253_CR26","doi-asserted-by":"crossref","unstructured":"Morgan LM, Krueger RA. Planning focus groups. Thousand Oaks: Sage Publications; 1997.","DOI":"10.4135\/9781483328171"},{"key":"1253_CR27","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349\u201357.","journal-title":"Int J Qual Health Care"},{"key":"1253_CR28","doi-asserted-by":"crossref","first-page":"1115","DOI":"10.1136\/bmj.322.7294.1115","volume":"322","author":"RS Barbour","year":"2001","unstructured":"Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ. 2001;322:1115.","journal-title":"BMJ."},{"key":"1253_CR29","volume":"12","author":"F Dwamena","year":"2012","unstructured":"Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorski A, et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev. 2012;12:CD003267.","journal-title":"Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev."},{"key":"1253_CR30","doi-asserted-by":"crossref","first-page":"1085","DOI":"10.1016\/j.socscimed.2011.01.020","volume":"72","author":"LA McCormack","year":"2011","unstructured":"McCormack LA, Treiman K, Rupert D, et al. Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach. Soc Sci Med. 2011;72:1085\u201395.","journal-title":"Soc Sci Med"},{"key":"1253_CR31","volume-title":"A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS\u2014practical systematic review of self-management support for long-term conditions","author":"SJC Taylor","year":"2014","unstructured":"Taylor SJC, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A, Purushotham N, Jacob S, Griffiths CJ, Greenhalgh T, Sheikh A. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS\u2014practical systematic review of self-management support for long-term conditions. Southampton: NIHR Journals Library; 2014."},{"key":"1253_CR32","doi-asserted-by":"publisher","unstructured":"Collister D, Pyne L, Cunningham J, Donald M, Molnar A, Beaulieu M, Levin A, Brimble KS. Multidisciplinary chronic kidney disease clinic practices: a scoping review. Can J Kidney Health Dis. 2019. https:\/\/doi.org\/10.1177\/2054358119882667.","DOI":"10.1177\/2054358119882667"},{"key":"1253_CR33","doi-asserted-by":"crossref","first-page":"169","DOI":"10.11124\/JBISRIR-2016-003011","volume":"14","author":"N Helou","year":"2016","unstructured":"Helou N, Dwyer A, Shaha M, Zanchi A. Multidisciplinary management of diabetic kidney disease: a systematic review and meta-analysis. JBI Database System Rev Implement Rep. 2016;14:169\u2013207.","journal-title":"JBI Database System Rev Implement Rep"},{"key":"1253_CR34","doi-asserted-by":"crossref","first-page":"562637","DOI":"10.1100\/2012\/562637","volume":"2012","author":"R Garcia-Retamero","year":"2012","unstructured":"Garcia-Retamero R, Okan Y, Cokely ET. Using visual aids to improve communication of risks about health: a review. Sci World J. 2012;2012:562637.","journal-title":"Sci World J"},{"issue":"Suppl 2","key":"1253_CR35","doi-asserted-by":"crossref","first-page":"S7","DOI":"10.1186\/1472-6947-13-S2-S7","volume":"13","author":"LJ Trevena","year":"2013","unstructured":"Trevena LJ, Zikmund-Fisher BJ, Edwards A, Gaissmaier W, Galesic M, Han PKJ, et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Med Inform Decis Mak. 2013;13(Suppl 2):S7.","journal-title":"BMC Med Inform Decis Mak"},{"key":"1253_CR36","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1186\/s12875-020-01113-0","volume":"21","author":"MS Matthias","year":"2020","unstructured":"Matthias MS, Imperiale TF. A risk prediction tool for colorectal cancer screening: a qualitative study of patient and provider facilitators and barriers. BMC Fam Pract. 2020;21:43.","journal-title":"BMC Fam Pract"},{"key":"1253_CR37","doi-asserted-by":"crossref","first-page":"e025586","DOI":"10.1136\/bmjopen-2018-025586","volume":"9","author":"E Tang","year":"2019","unstructured":"Tang E, Exley C, Price C, Stephan B, Robinson L. The views of public and clinician stakeholders on risk assessment tools for post-stroke dementia: a qualitative study. BMJ Open. 2019;9:e025586.","journal-title":"BMJ Open"},{"key":"1253_CR38","doi-asserted-by":"crossref","unstructured":"Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016:1753\u201360.","DOI":"10.1177\/1049732315617444"}],"container-title":["BMC Medical Informatics and Decision Making"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12911-020-01253-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12911-020-01253-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12911-020-01253-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,9,15]],"date-time":"2021-09-15T23:27:51Z","timestamp":1631748471000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcmedinformdecismak.biomedcentral.com\/articles\/10.1186\/s12911-020-01253-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9,16]]},"references-count":38,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2020,12]]}},"alternative-id":["1253"],"URL":"https:\/\/doi.org\/10.1186\/s12911-020-01253-4","relation":{},"ISSN":["1472-6947"],"issn-type":[{"type":"electronic","value":"1472-6947"}],"subject":[],"published":{"date-parts":[[2020,9,16]]},"assertion":[{"value":"24 January 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 September 2020","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"16 September 2020","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The University Health Network Research Ethics Board approved this study and all participants provided informed consent prior to the focus group.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"231"}}