{"Affiliation":[{"label":"Affiliation","value":"Medicine, Faculty of","attrs":{"lang":"en","ns":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","classmap":"vivo:EducationalProcess","property":"vivo:departmentOrSchool"},"iri":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","explain":"VIVO-ISF Ontology V1.6 Property; The department or school name within institution; Not intended to be an institution name."},{"label":"Affiliation","value":"Non UBC","attrs":{"lang":"en","ns":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","classmap":"vivo:EducationalProcess","property":"vivo:departmentOrSchool"},"iri":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","explain":"VIVO-ISF Ontology V1.6 Property; The department or school name within institution; Not intended to be an institution name."},{"label":"Affiliation","value":"Medicine, Department of","attrs":{"lang":"en","ns":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","classmap":"vivo:EducationalProcess","property":"vivo:departmentOrSchool"},"iri":"http:\/\/vivoweb.org\/ontology\/core#departmentOrSchool","explain":"VIVO-ISF Ontology V1.6 Property; 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Local Field; Refers to the publisher or author who holds the copyright."}],"Creator":[{"label":"Creator","value":"Gagliardi, Anna R","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/creator","classmap":"dpla:SourceResource","property":"dcterms:creator"},"iri":"http:\/\/purl.org\/dc\/terms\/creator","explain":"A Dublin Core Terms Property; An entity primarily responsible for making the resource.; Examples of a Contributor include a person, an organization, or a service."},{"label":"Creator","value":"Reich, Heather N","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/creator","classmap":"dpla:SourceResource","property":"dcterms:creator"},"iri":"http:\/\/purl.org\/dc\/terms\/creator","explain":"A Dublin Core Terms Property; An entity primarily responsible for making the resource.; Examples of a Contributor include a person, an organization, or a service."},{"label":"Creator","value":"Cattran, Daniel C","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/creator","classmap":"dpla:SourceResource","property":"dcterms:creator"},"iri":"http:\/\/purl.org\/dc\/terms\/creator","explain":"A Dublin Core Terms Property; An entity primarily responsible for making the resource.; Examples of a Contributor include a person, an organization, or a service."},{"label":"Creator","value":"Barbour, Sean J.","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/creator","classmap":"dpla:SourceResource","property":"dcterms:creator"},"iri":"http:\/\/purl.org\/dc\/terms\/creator","explain":"A Dublin Core Terms Property; An entity primarily responsible for making the resource.; Examples of a Contributor include a person, an organization, or a service."}],"DateAvailable":[{"label":"Date Available","value":"2020-09-18T15:21:39Z","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/issued","classmap":"edm:WebResource","property":"dcterms:issued"},"iri":"http:\/\/purl.org\/dc\/terms\/issued","explain":"A Dublin Core Terms Property; Date of formal issuance (e.g., publication) of the resource."}],"DateIssued":[{"label":"Date Issued","value":"2020-09-16","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/issued","classmap":"oc:SourceResource","property":"dcterms:issued"},"iri":"http:\/\/purl.org\/dc\/terms\/issued","explain":"A Dublin Core Terms Property; Date of formal issuance (e.g., publication) of the resource."}],"Description":[{"label":"Description","value":"Background\r\nIgA 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.\r\n\r\n\r\nMethods\r\nWe 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.\r\n\r\n\r\nResults\r\nThe 5 participants were Caucasian men who varied in age from 35 to 55. The glomerular filtration rate ranged from 29 to 71\u2009mL\/min\/1.73m2, 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.\r\n\r\n\r\nConclusions\r\nPatients 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.","attrs":{"lang":"en","ns":"http:\/\/purl.org\/dc\/terms\/description","classmap":"dpla:SourceResource","property":"dcterms:description"},"iri":"http:\/\/purl.org\/dc\/terms\/description","explain":"A Dublin Core Terms Property; An account of the resource.; Description may include but is not limited to: an abstract, a table of contents, a graphical representation, or a free-text account of the resource."}],"DigitalResourceOriginalRecord":[{"label":"Digital Resource Original Record","value":"https:\/\/circle.library.ubc.ca\/rest\/handle\/2429\/76085?expand=metadata","attrs":{"lang":"en","ns":"http:\/\/www.europeana.eu\/schemas\/edm\/aggregatedCHO","classmap":"ore:Aggregation","property":"edm:aggregatedCHO"},"iri":"http:\/\/www.europeana.eu\/schemas\/edm\/aggregatedCHO","explain":"A Europeana Data Model Property; The identifier of the source object, e.g. the Mona Lisa itself. This could be a full linked open date URI or an internal identifier"}],"FullText":[{"label":"Full Text","value":"RESEARCH ARTICLE Open AccessHow to optimize the design andimplementation of risk prediction tools:focus group with patients with IgAnephropathyAnna R. Gagliardi1* , Heather N. Reich1, Daniel C. Cattran1 and Sean J. Barbour2AbstractBackground: IgA nephropathy (IgAN) is a common type of chronic immune-mediated kidney disease with variablerisk of progression to end-stage kidney disease. Risk stratification helps clinicians weight the potential risks andbenefits of immunosuppressive therapy for individual patients, and can inform patient-centred communication. Noprior research examined barriers of risk predication tools (RPT) specific to IgAN. The purpose of this study was toexplore 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-provenIgAN. We asked about how they would use an IgAN RPT, and how to improve its design and implementation. Weanalyzed the transcript using constant comparison to inductively derive themes, and complied with qualitativeresearch reporting criteria.Results: The 5 participants were Caucasian men who varied in age from 35 to 55. The glomerular filtration rateranged from 29 to 71 mL\/min\/1.73m2, and proteinuria ranged from 0.36 to 1.41 g\/d. Participants identified bothbenefits and harms of the risk score. They said physicians should first ask patients for permission to use it. To makeit more useful, participants offered suggestions to enhance RTP design: visual display, information on how tointerpret the risk score, risk categories, health implications, modifiable risk factors, multiple scenarios, andcomparison with similar patients. They offered additional suggestions to enhance RPT implementation: it shouldnot replace patient-provider discussion, it should be accompanied by self-management education so that patientscan take an active role in their health. Participants appreciated information from members of the multidisciplinaryteam in addition to physicians. Participants also said that physicians should monitor patient emotions or concernson an ongoing basis.Conclusions: Patients with IgAN identified numerous ways to enhance the design and use of an RPT. Others coulduse 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.Keywords: Chronic kidney disease, IgA nephropathy, Patient-centred care, Patient-provider communication, Riskprediction calculator, User-centred design, Qualitative research\u00a9 The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you giveappropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate ifchanges were made. The images or other third party material in this article are included in the article's Creative Commonslicence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commonslicence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtainpermission directly from the copyright holder. To view a copy of this licence, visit http:\/\/creativecommons.org\/licenses\/by\/4.0\/.The Creative Commons Public Domain Dedication waiver (http:\/\/creativecommons.org\/publicdomain\/zero\/1.0\/) applies to thedata made available in this article, unless otherwise stated in a credit line to the data.* Correspondence: anna.gagliardi@uhnresearch.ca1University Health Network, Toronto, CanadaFull list of author information is available at the end of the articleGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 https:\/\/doi.org\/10.1186\/s12911-020-01253-4BackgroundGlomerulonephritis is a general term for autoimmune-based kidney diseases. The most common type of glom-erulonephritis worldwide is IgA nephropathy (IgAN),with patients diagnosed across the age spectrum, andpresenting at a mean age of 37 years [1]. Disease pro-gression of IgAN to end-stage kidney disease requiringdialysis is a devastating complication for such a youngpatient population. A significant challenge in IgAN isthat individual risk of progression to end-stage kidneydisease is highly variable, ranging between < 10 and >60% at 10 years [2]. Although effective immunosuppres-sive therapies are available, they are highly toxic with se-vere side effects [3]. As such, guidelines recommendeach patient be risk stratified so that treatment can betargeted to high-risk patients most likely to benefit [4].Although clinical risk factors for end-stage kidney dis-ease are well established and readily available, they arevery poor at predicting risk of disease progression, andrelying on them to guide treatment decisions results insignificant patient harm through inappropriate over orunder treatment [5\u20137].To more accurately predict disease progression inIgAN and support better decision-making, leading toimproved care delivery and optimal patient outcomes,our research group developed the International IgANPrediction Tool [8]. This initiative represents a largeinternational collaboration of investigators fromChina, Japan, Europe, North and South America, col-lectively referred to as the International IgAN Net-work, whose goal was to merge research databases inorder to provide the infrastructure necessary to sup-port the development and validation of the PredictionTool. This model uses predictor variables readilyavailable in clinical practice at the time of IgAN diag-nosis, can accurately predict the risk of a 50% declinein kidney function or end-stage kidney disease, andcould be employed as the basis for patient-providercommunication and decision-making [8].Risk prediction tools (RPTs) are one way to supportpatient-centred care (PCC), which is widely advocatedbecause it enhances patient-important and clinical out-comes such as increased knowledge, treatment adher-ence, and quality of life; and reduced anxiety,readmission rates and mortality [9\u201311]. PCC is definedas partnership among practitioners, patients and theirfamilies to ensure that providers and systems delivercare that is attentive to the needs, values and preferencesof patients [12]. By clarifying details about prognosis,RPTs can foster strong patient-provider communicationand care tailored to patient preferences. While the num-ber of available RPTs has considerably increased overthe past decade, particularly for diabetes and cardiovas-cular disease, research shows that they are not used inclinical practice [13\u201316]. As a result, others have arguedfor more research on factors that influence the adoptionand use of RPTs, and how to implement them in orderto maximize benefits and minimize potential harms suchas over-medicalization, false assurances and anxiety [13,14, 17, 18]. Barriers of RPT use are present at the phys-ician (threat to physician decision-making authority, evi-dence not provided on determinants of predicted risk,perceived importance of clinical issue, practicality of in-tegrating tools into practice) and patient (understandingresults, concerns about results) levels [19\u201321].The IgAN Prediction Tool has been integrated intothe Calculate app by QxMD (www.qxmd.com), which isa mobile app calculator that targets physicians as theknowledge users. Because of the complexity of predictorvariable input and the format of risk prediction output,the mobile app is likely not suitable for direct patientuse. To address this limitation, the International IgANNetwork plans to develop a patient-oriented web-basededucation tool that includes the Prediction Tool modelspresented in way specifically designed to meet patientneeds, inform them of their anticipated prognosis, andempower them to engage in informed discussions andshared decision making with their care team.The existing literature suggests that that RPTs requirephysicians to purposefully integrate their clinical experi-ence with probabilistic data, weigh the risks and benefitsfor a given patient, reach a decision, and translate all ofthat for patients to support patient engagement indecision-making, which is complex and challenging [19].However, these barriers were revealed in studies of RPTsfor post-operative nausea [19], diabetes [20], and phys-ical therapy [21], none of which are associated with suchclinically profound implications as IgAN. Given thatthere is no research on factors that influence the adop-tion and use of RPTs by patients with IgAN, and factorsinfluencing patient use of RPTs may differ by disease,there is no evidence to inform the development of thepatient education tool by the International IgAN Net-work. As such, the purpose of this study was to exploredeterminants (barriers\/facilitators) of the use of theIgAN Prediction Tool (henceforth, IgAN RPT) amongpatients with IgAN. This knowledge would offer insighton how to design and implement the IgAN RPT, andwill inform the design of a patient-oriented educationtool that in future research can be pilot tested andtrialed for use in clinical care.MethodsApproachThis research comprised the first step in developing apatient-oriented education tool. The overall approachwas based on two widely-used, complementary ap-proaches to develop and evaluate such interventions:Gagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 2 of 11Framework for the Design and Evaluation of ComplexInterventions [22], and user-centred design, which in-volves end-users in all development steps [23]. Step one,concept generation, refers to generating evidence to in-form intervention design, often based on qualitative re-search with a small number of participants. Subsequentsteps, including intervention development, pilot-testingand more definitive trial-based evaluation, then includea broader range of participants. In this case, given thepaucity of prior research on the views of IgAN patientsabout risk prediction, we employed a qualitative designto thoroughly explore patient experiences and sugges-tions related to the value of this information to patients[24]. More specifically, a basic qualitative descriptive ap-proach was used [25]. Unlike other qualitative ap-proaches that employ or generate theory, this techniqueelicits straightforward descriptions of lived experiences.We conducted an in-person focus group rather than in-dividual interviews because interaction amongst partici-pants encourages rich, synergistic discussion aboutcommon and differing views [26]. We complied with the32-item Consolidated Criteria for Reporting QualitativeResearch [27]. We further ensured rigour through inde-pendent coding and review of data by the research team,and assessment of discrepant experiences and sugges-tions [28]. The research team was composed of nephrol-ogists, and a PhD-trained health services research withexpertise in implementation science and qualitative re-search (ARG). The University Health Network ResearchEthics Board approved the study. We informed all par-ticipants about the study\u2019s purpose and provided writteninformed consent prior to the focus group. There wasno prior relationship between the interviewer andparticipants.Sampling and recruitmentWe used convenience sampling to recruit English-speaking adult persons (18+ years) diagnosed withbiopsy-proven IgAN, and with an estimated GFR(eGFR) > =20 ml\/min\/1.73m2 so that the disease was notconsidered so advanced that risk prediction was no lon-ger relevant. We excluded patients with both an eGFR>90ml\/min\/.173m2 and proteinuria< 0.5 g\/day becausethese patients have minimal disease activity and an ex-tremely favourable long-term kidney prognosis such thatrisk prediction is not relevant. We identified and re-cruited eligible persons at the University Health Net-work Glomerular Disease Clinic by a clinic nurseworking with two nephrologists (HR, DC). The clinicnurse obtained written, signed consent and then pro-vided contact details and demographic characteristics forconsenting persons to ARG. Thus, physicians on our re-search team were unaware of who from among theirpractice took part in focus groups. There was no priorrelationship between ARG and focus group participants.We aimed to recruit 6 to 8 persons, a common size forfocus groups [26]. We aimed to recruit persons who var-ied in non-mutually exclusive fashion for demographiccharacteristics that could influence their views and expe-riences such as age, gender, ethnicity, and measures ofdisease severity based on eGFR and proteinuria. Recruit-ment was launched on June 10, 2018 and concluded onJuly 10, 2019.Data collectionARG conducted a single one-hour focus group on Au-gust 13, 2019 in a meeting room at the hospital whereparticipants received care to provide a familiar, access-ible environment. First ARG explained the purpose ofthe study, defined a risk calculator, and showed an on-line version of the IgAN RPT and its output (https:\/\/qxmd.com\/calculate\/calculator_499\/international-igan-prediction-tool). ARG then asked four questions: Howwould you use information about whether you do or donot have a future risk of worsening kidney function? Howcould the risk calculator help you discuss your healthwith your doctor? How could the format and output ofthe risk calculator be improved so that it is more useful?and In addition to the risk calculator, is there anythingelse that would help patients discuss the risk calculatorresults with their nephrologist? The focus group wasaudio-recorded and transcribed by a professionaltranscriptionist.Data analysisARG and SB derived themes inductively from the datausing constant comparison [24]. Each independentlyread the transcript to identify and code all themes, dis-cussed and agreed upon themes, and created a codebookof themes and corresponding quotes in Microsoft Word.The research team reviewed themes and exemplarquotes to assist with interpretation of the findings.ResultsParticipantsIn total, 5 persons participated in the focus group. Theyvaried by age (range 35 to 55) and health status(Table 1).Themes by PCC domainThemes and exemplar quotes by PCC domain are in-cluded in Table 2 and discussed here.Need for risk scoreParticipants expressed two discrepant views about thevalue of a risk score. While they agreed that \u201cmore infor-mation is better\u201d, they also questioned the need for therisk score when they already actively tracked their labGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 3 of 11results through the hospital patient portal to monitordisease progression.Did we need the risk calculator to get us on trackand just have more self-awareness? No, I think wejust need the right communication with our phys-ician and the right information on how to interpretresults from the labPotential benefit of risk scoreParticipants identified several benefits of the risk score:it could give them a sense of their health status and,given their prognosis, the score could influence lifechoices.I certainly would make different life choices basedon any percentage chance of having a significantrisk of dialysis or even a transplant. It would accel-erate travel choices, lifestyle choices, job choicesand frankly would lead to quite a significant set ofchanges based on that informationParticipants thought that, upon diagnosis, the riskscore could function as a brief, simple summary of theircondition that could then inform more detailed and on-going patient-provider discussions to educate patientsabout the metrics that would be monitored over time toassess progression.It is definitely overwhelming, the number of metricsyou have to understand and learn about. It may be agood tool to just summarize because it is a reallyoverwhelming and as soon as you get that diagnosis,it would be simple enough to have a numberParticipants thought that the risk score was particu-larly important as a \u201cconversation starter\u201d for patientswhose physicians might not be ideal communicators.If it acts as a conversation starter, or someone ask-ing questions, then that\u2019s good. When I was first di-agnosed I had a doctor who basically said, this issomething you\u2019re gonna have to live with. Youknow, there are a couple of other treatments, butyou don\u2019t want to do those and we\u2019ll just put youon the ACE inhibitors. And I felt dismissed. Iwanted to know more and I wanted to know whatwas possible.Through repeated use, participants said the risk scorecould provide patients with information about the im-pact of treatment.Knowing at the beginning and then repeating, toshow we are making progress, or we are at leastmanaging the condition would be a great indicatorfor me. It would show the efficacy of the treatmentthat I\u2019m receiving.They also emphasized that the health care professionalproviding information and education need not be aphysician, and the risk calculator could equip non-physicians to assist with patient support.I was very fortunate to have, like a team, the phys-ician and the research scientist or technician, I\u2019mnot sure, help me interpret these things. So it wasn\u2019talways a physician.Potential harm of risk scoreParticipants also identified potential harm of the riskscore, which could cause concern or anxiety. They notedthat persons differ in their desire for information, andthat physicians should first ask patients if they want riskdata.It all depends on the patient. Some people mightreact in negative ways to that information or beovercome with anxiety. And so I think it\u2019s importantto ask the patient if they want to know.Participants said that, given surprise or shock uponfirst learning of their diagnosis, they experienced a de-layed emotional reaction. Hence, they said physiciansshould schedule a follow-up meeting soon after diagno-sis to address concerns or emotions, and that physiciansshould inquire about those feelings in subsequent peri-odic check-ups. This suggests that physicians should notTable 1 Focus group participant characteristicsGender Age Race eGFR(mL\/min\/1.73m2)Proteinuria(g\/d)KidneybiopsyEver treated withimmuno-suppressionCurrently onimmuno-suppressionOn renin-angiotensinsystem blockerMale 55 Caucasian 29 0.40 Sept 2009 Yes Yes YesMale 41 Caucasian 60 0.63 Apr 1998 No No YesMale 47 Caucasian 55 0.36 Oct 2014 Yes Yes YesMale 35 Caucasian 71 1.41 Sept 2011 Yes No YesMale 54 Caucasian 56 0.65 Oct 2016 Yes No YesGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 4 of 11Table 2 Themes and exemplar quotesThemes Sub-themes and exemplar quotesValue of risk score Advantage over current self-monitoring\u2022 The information isn\u2019t of use to me, speaking personally. I get the copies of the lab results. I track them onmy cell to see how progression is. I think they\u2019re moving away from the old model whereby you know thedoctor has the information, tells the patient what to do\u2022 did we need the risk calculator to get us on track and just have more self awareness? No, I think we just hadthe right communication with our physician and the right information on how to interpret results from the lab\u2022 for me the number is a very small part of the story and I want to know what I can control and what\u2019spotentially controllable because that\u2019s what I can act on. If I\u2019m just given a number, I mean the number itselfdoesn\u2019t really do anything to help me practically. It just gives you an idea of the statistical likelihood ofsomething happeningAny information is useful\u2022 I think it\u2019s useful for a patient to have that information as well\u2022 More information is better. I like to know as much as possible.\u2022 I don\u2019t see any disadvantages; I see many positives to sharing this information with patientsBenefits of risk score Understand health status\u2022 it just gives you a sense of direction or piece of mind I guess, knowing what your numbers are. When youget diagnosed, you want to know more, you want to know, \u2018Okay, what the hell, what am I doing? Wheream I going? What\u2019s my direction here?\u2019 So a little bit more of that is always a positive\u2022 it reflects on what the status is and the prognosis; it\u2019s a fairly measurable quantitative assessment of whereyou are right nowPeriodic use could show changes or improvements\u2022 my early diagnosis would have had a very high score of potential failure within a short period of time;treatment began and we levelled off. And I would suggest that if we were to repeat that, my score wouldnow be lower than it was. So I think knowing at the beginning and then repeating the, to show we aremaking progress or we are at least managing the condition would be a great indicator for me. It wouldshow the efficacy of the treatment that I\u2019m receiving\u2022 What is the frequency that we do this calculator? If I do it every week am I gonna benefit? And thenplotting the outcome of this over a five year period where I\u2019ve done it every three months or every sixmonths and now I can see the curve changing to flatter or zero. If it changes to zero or if it goes negative,and I growing new kidneys? So anything like that to give me a clue?Influence life choices\u2022 certainly would make different life choices based on any percentage chance if I thought of having asignificant risk of dialysis for \u2026 even a transplants \u2026 accelerate travel choices, the lifestyle choices, jobchoices and frankly would be quite a significant set of changes based on that information\u2022 So renal failure within 10-years, I\u2019d probably die of something else. Renal failure within 15 or 16 or 18months,I\u2019m gonna maybe make some choices, changesBasis for patient-provider discussions\u2022 These are the kinds of conversations that the physician and the patient need to have in the early stages ofdiagnosis because an education, the education curve is steep to try and understand renal diseases, not asimple thing and to try and get your head around all the metrics that we all track is a considerablycomplicated activity to learn to manage. So in the initial conversations, keep it simple, and let\u2019s graduallyadd complexity over time to help me better adapt to the onslaught of information that you get on the firstday of diagnosis.\u2022 it is definitely overwhelming, the number of metrics you have to understand and learn about. It maybe agood tool to just summarize because it is a really overwhelming and as soon as you get that diagnosis, itwould be simple enough to have a number\u2022 I was very fortunate to have somebody, like a team, the physician and the research scientist or technician,I\u2019m not sure, help me interpret these things. So it wasn\u2019t always a physicianPrompts discussion when physicians not forthcoming with information\u2022 I would imagine that there is some unevenness throughout the province; this could be a way of goingabout standardizing it, simplifying it as necessary to deal with the amount of information. But also to makethe information as available\u2022 if it acts as a conversation starter, or someone asking questions, then that\u2019s good. I guess a patient askingquestions is good because when I was first diagnosed, I feel very well taken care of at this hospital. When Iwas first diagnosed I had a doctor who basically said, this is something you\u2019re gonna have to live with. Youknow there are a couple of other treatments but you don\u2019t want to do those and we\u2019ll just put you on theACE inhibitors you know. And I felt dismissed. I wanted to know more and I wanted to know what waspossible.Harms of risk score Risk score could cause concern or anxiety\u2022 If there was a very high reading, what does that do to you mentally?\u2022 What about the situation where you log in and see the data and it\u2019s like 99%, what is there for people likethat with a mental reaction?Should ask patient if they want to know the risk score\u2022 it all depends on the patient. Some people might react in negative ways to that information or beovercome with anxiety. And so I think it\u2019s important to ask the patient if they want to know\u2022 that\u2019s a discussion between your physician and yourself, do you want to know? If something\u2019s going wrong,I want to know. But it might not be the same with everybody elseGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 5 of 11Table 2 Themes and exemplar quotes (Continued)Themes Sub-themes and exemplar quotesPhysicians should check emotions on an ongoing basis\u2022 when you have the meeting and you get your diagnosis; there\u2019s a lot to process. I processed my ownemotion slowly and so the impact didn\u2019t really hit until a few days later. But if I had known there\u2019s a follow-up appointment in a week or two to go back with questions and ask my doctor, maybe and that would bea good time to say, how are you feeling? But in that diagnosis meeting, of course there might be an imme-diate reaction but it\u2019s the long term reaction or the slower reaction that\u2019s gonna affect you for a longer time\u2022 depending on the physician, patient relationship, getting over that hurdle of how should we approach thepsychological impact of being diagnosed with something that we can\u2019t do much for you other than renalreplacement. The whole concept of renal replacement as a treatment option, it just sounds horrible. Thatdoesn\u2019t look like a really great treatment option. I don\u2019t know if other people feel the same way. I hate thethought of begging for a kidney. I hate the thought of using any kind of dialysis. Dirt nap sounds a little better.Desired adjunct information orformat of risk scoreOn it\u2019s own, risk score not useful\u2022 Narrowing it down to one number, one percentage seems like an oversimplification. It\u2019s nice to have that, anidea of sort of where you sit statistically, but it doesn\u2019t give you an idea of how you can change your lifestyle\u2022 You get a number, what does that mean? Is there a little report that comes with it?Discussion with physician essential\u2022 one caveat is if there was a little percentage chance that it could be a false negative. That this is somethingthat could be addressed through doctor-patient counselling to reassure, just because it\u2019s a low percentchance, you\u2019re not out of the woods\u2022 this is supplementary rather than a replacement as part of the overall communicationsClarifying purpose and timing\u2022 Is this a tool to find out if you have kidney problems? Not because you already had them and you\u2019remonitoring?\u2022 So it\u2019s not necessarily a tool that\u2019s used after you have already been through a few years of it?How different variables influence risk score\u2022 Some questions about some of the metrics, it\u2019s not clear if a change in proteinuria of 1.5 to 1.6 affects thepotential number that I get scored at by a factor of 1 or 10 or 100. So the rating or the impact of thevariations in values, is age increase by one year going to increase my risk by 10%, or does age increase byone year a very insignificant factor. So the ranking or the weighting of the individual metrics themselveswould make it easier to better interpret the actual score\u2022 What is the scientific background, the interpretation of these numbers? What is the behind the scenescalculations? I would like to know a little bit more about how they came up with all this information, morethan just a percentage\u2022 Some of the other metrics that I don\u2019t think I have any control over are the MBST scores. Your biopsy resultsare created as a result of your test. I personally don\u2019t ever want to have to go through that again. So I\u2019verepeating the biopsy to get a MEST score, no thank you; unless absolutely necessary and it\u2019s a pretty highrisk procedure anyway. So I don\u2019t think I can change the outcome by asking for more biopsies, I actuallymake it worse. But the things I can do something about or changing my immunosuppressant medicationlevels, changing my diet, changing my coffee consumption or my alcohol consumption, whatever it takesReport score as a category\u2022 if it\u2019s over a certain percentage, it\u2019s flagged as very high rather than trying to grade between 50 and 99 or100\u2022 a translation table of what the different percentage ranges means to me directly. So a score of 0\u20135%, a scoreof 5\u201315%, a score of 15\u201325 indicates renal failure within one year, five years, ten years would be a betterindicator for me than a number. So a correlation table of what this percentage could mean to me withrespect to a need for renal replacement therapy.\u2022 I\u2019m thinking of a green, yellow. If you\u2019ve had lab work done. on a lab work result, you\u2019ll get a green, yellow,red bar and it indicates you know if you\u2019re in the yellow area that\u2019s a sort of timeframeReport multiple scenarios based on differing variables\u2022 If my predication is 10-perecent with a five year forecast; is my prediction going to be 2% of the one yearforecast? Is it linear or is it? So I\u2019d like to know. I don\u2019t want to know five years from now. I want to know 12months from now is my decline immediate or is my decline longer term?\u2022 Can you play with numbers maybe? Have it like the loan thing where you\u2019re trying to figure out yourmonthly payments, and you want a $500 amount payment. One year I get this, at two years I get this, atfour years I get this.Report individual data in comparison with population\u2022 Some kind of a scale to know where you\u2019re at with that number\u2022 Is there any way of knowing the rest of the population as a comparison?\u2022 knowing some statistics about people in my situation and my age with these scores. For a patient wholooks like me, what is the likelihood that this treatment plan will be successful?Other related desired information Which factors influence disease even minimally that they could control\u2022 I had asked to see a dietician and then saw a naturopath as well, just to understand some other things thatcould help. If you know some of the things that we consume and some of the things that we shouldn\u2019t beconsuming. I don\u2019t think what was communicated enough, I had to actually get the information\u2022 overall fitness I think was one of the suggestions about how I might be able to prolong but I don\u2019t think Iwas given a whole lot of indicators of what can I do? What can I actually have an effect on? Is it nutrition? Isit weight? Is it exercise?Gagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 6 of 11rely on the risk calculator as the basis for a single,discrete conversation about prognosis.Supplementary informationParticipants felt that the risk score, a single number on itsown, was not terribly useful, and offered several sugges-tions for supplemental information that should accom-pany the risk score to make it more useful for patients.However, they also said the risk score and accompanyinginformation should be supplementary to, rather than a re-placement for patient-provider discussion.You get a number, what does that mean? Is there alittle report that comes with it?Participants wanted more information about how tointerpret the risk score, and the weight of the variablesthat gave rise to the risk score. In large part, this was be-cause they wanted to know which factors they couldmodify to improve their score, further emphasizing theirdesire for active involvement in their own health careand seeking to gain control.It\u2019s not clear if a change in proteinuria of 1.5 to 1.6 af-fects the potential number that I get scored at by afactor of 1 or 10 or 100. So the rating or the impactof the variations in values. Is age increase by one yeargoing to increase my risk by 10%, or is age increaseby one year a very insignificant factor. So the rankingor the weighting of the individual metrics wouldmake it easier to better interpret the actual score.Participants offered suggestions for alternative outputsto the single number risk score. They recommended arisk category along with a definition or explanation ofthe categories and associated health implications, par-ticularly for higher risk scores. Participants also thoughtthat a visual display would be more informative and ap-pealing way to convey risk categories; for example, byusing the green, yellow and red rubric.So a score of 0 to 5%, a score of 5 to 15%, a score of15 to 25% indicates renal failure within one year,five years, ten years would be a better indicator forme than a number. So a correlation table of whatthis percentage could mean to me with respect to aneed for renal replacement therapy.If it\u2019s over a certain percentage, it\u2019s flagged as very highrather than trying to grade between 50 and 99 or 100They also agreed that seeing multiple scenarios basedon different variables, for example, differing timeline,would be more useful than seeing only one risk scorebased on a single set of variables, likening this to mort-gage amortization.If my prediction is 10% with a five year forecast, ismy prediction going to be 2% of the one year fore-cast? Is it linear? I don\u2019t want to know five yearsfrom now. I want to know 12 months from now, ismy decline immediate or is my decline longer term?Another suggestion was to report individual risk datain comparison with similar patients as a way to gaugetheir own health status or progression.Is there any way of knowing the rest of the popula-tion as a comparison? Knowing some statisticsTable 2 Themes and exemplar quotes (Continued)Themes Sub-themes and exemplar quotes\u2022 what else should we measure or what other factors that aren\u2019t being taken into consideration with the tooltoday, could be that might be useful. So lifestyle choices I think is an indicator of prognosis if you havegood or poor lifestyle choices and again, whether your obesity is a factor. It doesn\u2019t appear to be anywherein the metrics gathered. Is a patient who is extremely obese at a greater risk than somebody\u2019s who weighsless? But if there\u2019s an indicator that obesity is being taken into consideration, I think that might besomething that at least would give patients an opportunity to say there\u2019s something I can try and dosomething about. Even if it\u2019s not a 100% on the weight scale [for the risk score], maybe it\u2019s only a 1% or 2%impact, but it\u2019s something the patient could use. So that would be another measure that I would thinkshould be something to considerInformational\/educational material\u2022 A huge part of it is education for the patient and actually trying to be able to understand what it is thatthey\u2019re telling you. Because for some reason you start talking about creatinine and all these other values thatyou really don\u2019t have a clue what they\u2019re talking about and it\u2019s very difficult to make any kind of decisions.Gauging the comprehension levels of the patient is very difficult for the physician in a 20-min consultationto actually determine if I understand what he\u2019s telling me\u2022 when you first get your diagnosis you really don\u2019t know anything about it. So the first thing you do, you try tolook it up. And when you try to look it up, most of the websites are just like way over your head at first, right?Because you don\u2019t understand what this means, what this number means or whatever, you\u2019re just inundated. Soif they had like a simplified, okay this is what this means like in laymen terms about all the aspects, reallyaccessible \u2026 info, like on the website or something like that? It probably be a lot easier on someoneGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 7 of 11about people in my situation and my age with thesescores. For a patient who looks like me, what is thelikelihood that this treatment plan will besuccessful?Other desired informationApart from information to explain and supplement therisk score, participants also desired information onwhich lifestyle factors could prevent or reverse diseaseprogression, even if they were not variables included inthe risk score. They said that, even if the impact weresmall, they would want to do anything they could to im-prove their health status.Is there anything at all that an individual can actu-ally do to affect that number?What other factors, that aren\u2019t being taken into consider-ation with the tool today, might be useful. So lifestylechoices I think is an indicator of prognosis \u2026 It doesn\u2019tappear to be anywhere in the metrics gathered \u2026 I thinkthat might be something that at least would give patientsan opportunity to say there\u2019s something I can try and dosomething about. Even if it\u2019s not a 100% on the weightscale [for the risk score], maybe it\u2019s only a 1% or 2% im-pact, but it\u2019s something the patient could use.Participants also said there is a need for easy-to-understand information to read on their own, given thatit was difficult to absorb the large amount of complexinformation conveyed to them during a clinicalconsultation.A huge part of it is education for the patient and ac-tually trying to be able to understand what it is thatthey\u2019re telling you \u2026 Gauging the comprehensionlevels of the patient is very difficult for the physicianin a 20-minute consultationWhen you first get your diagnosis you really don\u2019tknow anything about it. So the first thing you do,you try to look it up. And when you try to look itup, most of the websites are way over your head atfirst, right? Because you don\u2019t understand what thisnumber means, you\u2019re just inundated. So if they hada simplified, in layman terms, about all the aspects,really accessible, like on the website, it would prob-ably be a lot easierDiscussionUsing a focus group of IgAN patients who varied by ageand disease severity, we identified both benefits andharms of implementing the IgAN RPT. Participants saidphysicians should first ask patients for permission to usethe risk score, and that when used, it should be supple-mental to, and not a replacement for patient-providerdiscussion. To make it more useful, they offered sugges-tions for information that should be provided along withthe risk score to explain how the score was derived, howit will be used, and how to interpret the score. They alsooffered suggestions for alternative, possibly visual for-mats to more readily convey information about the riskscore and its implications. Participants desired additionalactionable information, potentially not included in therisk score, about what they could change or improve,even if impact on the risk score was small. These resultswill be used by the International IgAN Network to de-sign and subsequently test a patient-oriented educationtool specific to IgAN and that addresses the benefits andharms of the RPT that were identified in this study.Prior research on RPTs examined the perspective ofphysicians pertaining to diabetes, cardiovascular disease,post-operative nausea, and physical therapy [13\u201316, 19\u201321]. While some of those studies identified potential pa-tient barriers (i.e. understanding results), they were iden-tified by physicians and not by patients. Hence, thisstudy is unique in that it directly elicited views aboutRPTs from patients, and for a condition such as IgANthat has not been previously studied. Furthermore, byusing a qualitative approach, we gathered rich, detailedinformation about a wide variety of factors that may in-fluence whether and how physicians employ RPTs inIgAN. Overall, this suggests that if RPTs are not de-signed to meet patient needs, they may be rejected bypatients, or contribute to concern and anxiety amongpatients. This finding potentially explains prior researchshowing that RPTs were not used in practice [13\u201316],and confirms prior research showing that condition-specific communication tools were more likely to beadopted and offered greater benefit when aimed at bothpatients and clinicians [27].This study provides useful insight on how to enhancethe implementation of RPTs in IgAN by designing themso that they are easy to understand and apply by pa-tients. In this study, patients said that the single riskscore would be more useful if visually displayed and ac-companied by information on how to interpret the riskscore, risk categories, health implications, and modifiablerisk factors, with the provision of multiple scenarios thatvary by variables such as timeline, and with comparisonto similar patients. Although the results of this study willbe used to design a patient-oriented education tool spe-cific to IgAN, it is not known if these preferences alsoapply to RPTs for patients with other conditions. Assuch, those who create RPTs should employ a user-centred design approach, which engages end-users in allGagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 8 of 11development stages including design, pilot-testing andtrialing [23]. Patients in this study emphasized that phy-sicians should not rely on the RPT as the basis for a sin-gle, discrete conversation and should instead use theRPT to inform additional, ongoing communication. Thispertained to the emotional reaction to a diagnosis ofIgAN, which patients described as delayed. This findingunderscores that physicians must address the multidi-mensional nature of PCC, conceptualized as 28 elementsorganized in six domains: foster patient-clinician rela-tionship, exchange information, recognize and respondto patient emotions, manage uncertainty, make shareddecisions, and enable patient self-management [29, 30].Patients desired more information and education on life-style factors they could modify, thereby taking an activerole in their illness, and assuming control for at leastsome part of it. A meta-review of self-management forindividuals with chronic kidney disease revealed that pa-tients perceived a shallow relationship with health careproviders and desired greater educational and emotionalsupport so that they could optimize self-managementand quality of life [31].Patients in the current study also highlighted that othermembers of the multidisciplinary team could assist physi-cians in providing information and education. Multidiscip-linary care for chronic kidney disease often involvesnephrologists, nurses, dieticians, social workers, and phar-macists, and has been associated with improved health-related quality of life and patient self-care abilities [32, 33].Still, research has identified numerous physician-specificbarriers of RPT use, which in turn, may limit use by othermembers of the multidisciplinary team or by patients.Therefore, in addition to studying patient uptake of RPTs,ongoing research must in parallel investigate how tooptimize the design and implementation of RPTs from thephysician perspective. Given divergent physician barriers(e.g. views about strength or validity of underlying evidence,logistics of incorporating RPTs into practice), multiplestrategies may be needed to promote physician adoption ofRPTs. Of note, the Kidney Disease Improving Global Out-comes recent 2020 update to the international guidelinesfor the management of patient with IgAN now specificallyrecommend that physicians use the RPT to risk stratify allpatients with IgAN (https:\/\/kdigo.org\/guidelines\/gn\/). Weanticipate that this guideline will encourage and facilitatephysician use of the RPT in clinical practice.Similar to prior research, our results show that pa-tients desire and benefit from supplementary informa-tion and visual aids in additional to risk statistics [34,35]. However, much of that prior research did not elicitviews directly from patients, or about the design of anRPT or accompanying information. Such examples in-clude a review of issues pertaining to communicatingnumerical data in general, and not specifically risk data[34]; consensus generated by a panel of 14 researcherson how to communicate risk [35]; and interviews with15 patients about the acceptability and use of an RPTfor colorectal cancer screening in which their expressedviews pertained to value for the RPT if it steered themto the fecal immunochemical test, which they preferredover colonoscopy [36]. Tang et al. interviewed 15 strokepatients about an RPT for post-stroke dementia, inwhich patients identified several benefits (timely diagno-sis, time to prepare, reassurance) and challenges (anxietyabout a dementia diagnosis) but did not describe how todesign or implement the RPT [37]. Thus, our study isunique in that we employed a qualitative approach tothoroughly understand how to optimize the design andimplementation of an RPT, in our case, specifically forIgAN. Still, future research is warranted to synthesizepublished research similar to Tang et al. [37] and ourstudy on patient views or experiences with RPTs, infor-mation of use to those developing and\/or implementingRPTs or accompany patient information or education.Several themes also suggest that, when implementingthe RPT in IgAN, physicians or other members of themultidisciplinary team should provide patients with briefeducation about the purpose of the RPT. For example,patients initially questioned why an RPT was needed ifthey themselves could follow lab test results via onlinepatient portals, signaling confusion about short-termchanges in lab tests versus the long-term scenario of-fered by the RPT. Patients also perceived that they couldrepeat the RPT after changes in diet or lifestyle; hence,brief education may be needed to explain that RPT datais based on similar patients, and it may not reflect indi-vidual reduction in risk based on lifestyle changes.This study featured both strengths and limitations. Weemployed rigorous qualitative methods that compliedwith reporting standards [24\u201328]. In so doing, we gener-ated thorough insight on how to enhance the design ofan RPT for IgAN patients, which may lead to improvedimplementation in practice, and associated benefits forpatients. Although IgAN is a common type of auto-immune kidney disease, it is still rare with an incidencerate 30-fold less than more usual non-immune types ofkidney disease such as diabetes and hypertension [7].This likely contributed to the small sample size of ourstudy. While the participants varied in age and repre-sented a spectrum of disease severity (e.g. eGFR, protein-uria), other patient characteristics that could influenceviews were uniform (i.e. all Caucasian and male). Also,given the volunteer nature of this research, the partici-pants may have represented those who are proactiveabout seeking and using health information. As we con-ducted a single focus group, thematic saturation couldnot be assessed with a different group of participants.However, this study comprised the first step in a widely-Gagliardi et al. BMC Medical Informatics and Decision Making          (2020) 20:231 Page 9 of 11used process for developing and evaluating interven-tions, concept generation, typically involving brief con-sultation with a small group of end-users to gatherpreliminary feedback that is used to refine the interven-tion prior to engaging end-users in its further testingand evaluation [22, 23]. Furthermore, the key to samplesize in qualitative research is \u201cinformation power\u201d: whenthe study goal is narrow, the questions few and specific,and the dialogue rich, as was the case in this study, thefewer participants are needed [38]. Despite these limita-tions, the insights generated several implications for pol-icy and practice, which raise some issues that warrantongoing research including: explore views among pa-tients with diverse characteristics, assess views aboutRPT use among nephrologists, and develop and imple-ment the IgAN RPT with the features suggested by pa-tients and evaluate its impact on a range out outcomessuch as patient-provider communication, satisfactionwith the care experience, confidence to self-manage, andquality of life. Future development and evaluation ofpatient-oriented information or education pertaining toan IgAN RPT should engage patients and family with di-verse characteristics across multiple countries includingChina, Japan, and other countries in South and East Asiawhere IgAN is a common cause of kidney disease.ConclusionsPatients with IgAN who participated in a single qualitativefocus group identified numerous preferences for the de-sign of an IgAN RPT (visual display, information on howto interpret the risk score, risk categories, health implica-tions, modifiable risk factors, multiple scenarios, and com-parison with similar patients). They also providedimportant suggestions on how it should be implementedin practice (physicians should ask permission to use it, itshould not replace patient-provider discussion, it shouldbe accompanied by self-management education so thatpatients can take an active role, patients appreciate infor-mation from members of the multidisciplinary team inaddition to physicians, and physicians should monitoremotions or concerns on an ongoing basis). We will usethis knowledge to refine the design of a patient educationtool to support use of the IgAN RPT. We suggest this ap-proach and the findings can be used to design RPTs forpatients with kidney conditions other than IgAN and withother organ progressive disease conditions.Supplementary informationSupplementary information accompanies this paper at https:\/\/doi.org\/10.1186\/s12911-020-01253-4.Additional file 1. Focus group guide. Lists questions used and timeallotted for each questions during the focus group.Additional file 2. Consolidated Criteria for Reporting QualitativeResearchAbbreviationsIgAN: IgA nepropathy; PCC: Patient-centred care; RPT: Risk prediction toolAcknowledgementsWe thank Claire Kim and Ping Lam for assisting with recruitment and datacollection.Authors\u2019 contributionsSB acquired funding. ARG, SB, HR and DC conceptualized the study. ARGcoordinated the study, and collected and analyzed data. HR and DC assistedwith data collection. ARG, HR, DC and SB interpreted study findings. ARGdrafted the manuscript. HR, DC and SB edited the manuscript. All authorsread and approved the final manuscript.FundingThis research was undertaken with funding from the Canadian Institutes ofHealth Research, who took not part in study design; data collection, analysisor interpretation; or in writing the manuscript.Availability of data and materialsAll data generated or analysed during this study are included in thispublished article [and its supplementary information files].Ethics approval and consent to participateThe University Health Network Research Ethics Board approved this studyand all participants provided informed consent prior to the focus group.Consent for publicationNot applicable.Competing interestsThe authors declare that they have no competing interests.Author details1University Health Network, Toronto, Canada. 2University of British Columbia,Vancouver, Canada.Received: 24 January 2020 Accepted: 9 September 2020References1. Barbour SJ, Reich HN. 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