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window.loswp.willEdgeCache = false; window.loswp.work = {"work":{"id":81898741,"created_at":"2022-06-20T05:56:40.804-07:00","from_world_paper_id":208880320,"updated_at":"2024-11-22T20:54:36.842-08:00","_data":{"publisher":"Elsevier BV","grobid_abstract":"Background: Focal segmental glomerulosclerosis (FSGS) is a kidney disease that affects patients' functioning and well-being. This study aimed to develop patient-reported outcome questionnaires to measure patient experiences related to FSGS. Study Design: Qualitative patient interviews to identify important symptoms and concepts (concept elicitation) formed the basis for the development of 2 questionnaires, one on symptoms and one on their impact. Additional qualitative interviews were implemented to evaluate/refine the questionnaires (cognitive debriefing). Transcripts of concept elicitation and cognitive debriefing interviews, conducted by telephone, were analyzed for concepts of interest using qualitative text analysis. Setting \u0026 Participants: Patients with FSGS (aged 18-65 years with estimated glomerular filtration rates $ 40 mL/min/1.73 m 2) whose disease remained inadequately controlled after 2 or fewer courses of treatment. Methodology: Qualitative concept elicitation and cognitive debriefing interviews. Analytical Approach: Interview transcripts were analyzed using qualitative software, MAXQDA. Results: 30 patients completed concept elicitation interviews; 9 patients completed cognitive debriefing interviews. Frequently mentioned symptoms included swelling from the waist down/legs/knees/feet/ankles (67%), fatigue (57%), stomach/abdomen swelling (43%), body pain/pressure (30%), and shortness of breath (20%), as well as impacts on physical (52%), emotional (68%), and social functioning (89%). Based on analyses of interview transcripts and clinical input, 2 questionnaires, one on symptoms and one on the impact of the symptom, were drafted. The 23-item FSGS Symptom Diary (assessing the frequency and severity of FSGS symptoms during the past 24 hours) and the FSGS Symptom Impact Questionnaire (17 items assessing interference with activities and emotions during the past 7 days) were iteratively revised based on cognitive debriefing interviews. Limitations: The study was restricted to English-speaking adults located in the United States, and the concept elicitation interview group had a low number of African Americans. Conclusions: The FSGS Symptom Diary and FSGS Symptom Impact Questionnaire are new FSGSspecific patient-reported outcomes measures designed to support a comprehensive assessment of symptoms and symptom impact in adults with FSGS. Future research is needed to evaluate their quantitative measurement properties.","publication_date":"1999,,","publication_name":"American Journal of Kidney Diseases","grobid_abstract_attachment_id":"87781577"},"document_type":"paper","pre_hit_view_count_baseline":null,"quality":"high","language":"en","title":"Development of focal segmental glomerulosclerosis in the renal allograft of a patient with lupus","broadcastable":false,"draft":null,"has_indexable_attachment":true,"indexable":true}}["work"]; window.loswp.workCoauthors = [44516105]; window.loswp.locale = "en"; window.loswp.countryCode = "SG"; window.loswp.cwvAbTestBucket = ""; window.loswp.designVariant = "ds_vanilla"; window.loswp.fullPageMobileSutdModalVariant = "full_page_mobile_sutd_modal"; window.loswp.useOptimizedScribd4genScript = false; window.loswp.appleClientId = 'edu.academia.applesignon';</script><script defer="" src="https://accounts.google.com/gsi/client"></script><div class="ds-loswp-container"><div class="ds-work-card--grid-container"><div class="ds-work-card--container js-loswp-work-card"><div class="ds-work-card--cover"><div class="ds-work-cover--wrapper"><div class="ds-work-cover--container"><button class="ds-work-cover--clickable js-swp-download-button" data-signup-modal="{"location":"swp-splash-paper-cover","attachmentId":87781577,"attachmentType":"pdf"}"><img alt="First page of “Development of focal segmental glomerulosclerosis in the renal allograft of a patient with lupus”" class="ds-work-cover--cover-thumbnail" src="https://0.academia-photos.com/attachment_thumbnails/87781577/mini_magick20220620-12213-slk14s.png?1655729906" /><img alt="PDF Icon" class="ds-work-cover--file-icon" src="//a.academia-assets.com/images/single_work_splash/adobe_icon.svg" /><div class="ds-work-cover--hover-container"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span><p>Download Free PDF</p></div><div class="ds-work-cover--ribbon-container">Download Free PDF</div><div class="ds-work-cover--ribbon-triangle"></div></button></div></div></div><div class="ds-work-card--work-information"><h1 class="ds-work-card--work-title">Development of focal segmental glomerulosclerosis in the renal allograft of a patient with lupus</h1><div class="ds-work-card--work-authors ds-work-card--detail"><a class="ds-work-card--author js-wsj-grid-card-author ds2-5-body-md ds2-5-body-link" data-author-id="44516105" href="https://independent.academia.edu/AltonFarris"><img alt="Profile image of Alton Farris" class="ds-work-card--author-avatar" src="//a.academia-assets.com/images/s65_no_pic.png" />Alton Farris</a></div><div class="ds-work-card--detail"><p class="ds-work-card--detail ds2-5-body-sm">1999, American Journal of Kidney Diseases</p></div><p class="ds-work-card--work-abstract ds-work-card--detail ds2-5-body-md">Background: Focal segmental glomerulosclerosis (FSGS) is a kidney disease that affects patients' functioning and well-being. This study aimed to develop patient-reported outcome questionnaires to measure patient experiences related to FSGS. Study Design: Qualitative patient interviews to identify important symptoms and concepts (concept elicitation) formed the basis for the development of 2 questionnaires, one on symptoms and one on their impact. Additional qualitative interviews were implemented to evaluate/refine the questionnaires (cognitive debriefing). Transcripts of concept elicitation and cognitive debriefing interviews, conducted by telephone, were analyzed for concepts of interest using qualitative text analysis. Setting & Participants: Patients with FSGS (aged 18-65 years with estimated glomerular filtration rates $ 40 mL/min/1.73 m 2) whose disease remained inadequately controlled after 2 or fewer courses of treatment. Methodology: Qualitative concept elicitation and cognitive debriefing interviews. Analytical Approach: Interview transcripts were analyzed using qualitative software, MAXQDA. Results: 30 patients completed concept elicitation interviews; 9 patients completed cognitive debriefing interviews. Frequently mentioned symptoms included swelling from the waist down/legs/knees/feet/ankles (67%), fatigue (57%), stomach/abdomen swelling (43%), body pain/pressure (30%), and shortness of breath (20%), as well as impacts on physical (52%), emotional (68%), and social functioning (89%). Based on analyses of interview transcripts and clinical input, 2 questionnaires, one on symptoms and one on the impact of the symptom, were drafted. The 23-item FSGS Symptom Diary (assessing the frequency and severity of FSGS symptoms during the past 24 hours) and the FSGS Symptom Impact Questionnaire (17 items assessing interference with activities and emotions during the past 7 days) were iteratively revised based on cognitive debriefing interviews. Limitations: The study was restricted to English-speaking adults located in the United States, and the concept elicitation interview group had a low number of African Americans. Conclusions: The FSGS Symptom Diary and FSGS Symptom Impact Questionnaire are new FSGSspecific patient-reported outcomes measures designed to support a comprehensive assessment of symptoms and symptom impact in adults with FSGS. Future research is needed to evaluate their quantitative measurement properties.</p><div class="ds-work-card--button-container"><button class="ds2-5-button js-swp-download-button" data-signup-modal="{"location":"continue-reading-button--work-card","attachmentId":87781577,"attachmentType":"pdf","workUrl":"https://www.academia.edu/81898741/Development_of_focal_segmental_glomerulosclerosis_in_the_renal_allograft_of_a_patient_with_lupus"}">See full PDF</button><button class="ds2-5-button ds2-5-button--secondary js-swp-download-button" data-signup-modal="{"location":"download-pdf-button--work-card","attachmentId":87781577,"attachmentType":"pdf","workUrl":"https://www.academia.edu/81898741/Development_of_focal_segmental_glomerulosclerosis_in_the_renal_allograft_of_a_patient_with_lupus"}"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span>Download PDF</button></div></div></div></div><div data-auto_select="false" data-client_id="331998490334-rsn3chp12mbkiqhl6e7lu2q0mlbu0f1b" data-doc_id="87781577" data-landing_url="https://www.academia.edu/81898741/Development_of_focal_segmental_glomerulosclerosis_in_the_renal_allograft_of_a_patient_with_lupus" data-login_uri="https://www.academia.edu/registrations/google_one_tap" data-moment_callback="onGoogleOneTapEvent" id="g_id_onload"></div><div class="ds-top-related-works--grid-container"><div class="ds-related-content--container ds-top-related-works--container"><h2 class="ds-related-content--heading">Related papers</h2><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="0" data-entity-id="114627766" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/114627766/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study_Preprint_">Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study (Preprint)</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="60029887" href="https://astrazeneca.academia.edu/CathyEmmas">Cathy Emmas</a></div><p class="ds-related-work--metadata ds2-5-body-xs">2020</p><p class="ds-related-work--abstract ds2-5-body-sm">Background: Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective: The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods: Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients' experiences with CKD and its management. Results: The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions: This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study (Preprint)","attachmentId":111275699,"attachmentType":"pdf","work_url":"https://www.academia.edu/114627766/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study_Preprint_","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/114627766/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study_Preprint_"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="1" data-entity-id="65330745" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/65330745/Identifying_Outcomes_Important_to_Patients_with_Glomerular_Disease_and_Their_Caregivers">Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="207153938" href="https://independent.academia.edu/CharlotteLogeman">Charlotte Logeman</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Clinical Journal of the American Society of Nephrology</p><p class="ds-related-work--abstract ds2-5-body-sm">Background and objectivesShared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices.Design, setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically.ResultsAcross 16 focus groups, 134 participants (range, 19–85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), ...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers","attachmentId":76974610,"attachmentType":"pdf","work_url":"https://www.academia.edu/65330745/Identifying_Outcomes_Important_to_Patients_with_Glomerular_Disease_and_Their_Caregivers","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/65330745/Identifying_Outcomes_Important_to_Patients_with_Glomerular_Disease_and_Their_Caregivers"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="2" data-entity-id="20230896" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/20230896/Psychosocial_factors_in_adults_with_chronic_kidney_disease_characteristics_of_pilot_participants_in_the_Tasmanian_Chronic_Kidney_Disease_study">Psychosocial factors in adults with chronic kidney disease: characteristics of pilot participants in the Tasmanian Chronic Kidney Disease study</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="41438064" href="https://independent.academia.edu/MatthewJose1">Matthew Jose</a><span>, </span><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="41564726" href="https://utas.academia.edu/CharlotteMcKercher">Charlotte McKercher</a></div><p class="ds-related-work--metadata ds2-5-body-xs">BMC Nephrology, 2013</p><p class="ds-related-work--abstract ds2-5-body-sm">Psychosocial factors including depression, anxiety and lower social support are common in patients with chronic kidney disease (CKD). However the influence of these potentially modifiable risk factors on morbidity and mortality in this renal population is unknown. The Tasmanian Chronic Kidney Disease study is a prospective cohort study which aims to examine the influence of both biomedical and psychosocial factors on disease progression, decision making and length and quality of life in adults with severe CKD, prior to kidney replacement therapy (KRT). This paper describes the recruitment, baseline characteristics and initial follow-up of pilot participants. Adults aged &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; 18 years with stage 4 CKD (eGFR 15-29 mls/min/1.73 m2) and not receiving dialysis were recruited via treating physicians. Measures included depression (9-item Patient Health Questionnaire), anxiety (Beck Anxiety Inventory) and social support (Multidimensional Scale of Perceived Social Support). Primary outcomes were kidney disease progression, use of KRT and health-related quality of life (Kidney Disease and Quality of Life Short Form and the EQ-5D). Of those invited (n = 105), 49 provided consent and completed baseline assessment. There were no significant differences between responders and non-responders in age, gender and socio-economic status (all p &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt; 0.05). Participants were predominantly male (63.3%) with a mean age of 72.6 ± 10.2 years. Mean serum creatinine was 241 ± 62 μmol/L with mean eGFR 22 ± 5 mls/min/1.73 m2. Prevalence of major depression and moderate to severe anxiety was 10% and 9% respectively. Less severe depression and fewer anxiety symptoms were associated with higher health-related quality of life. Follow-up at 10-months showed CKD progression in 34% of participants (use of KRT in 16%, stage 5 CKD without KRT in 18%), one death, with the remainder stable at CKD stage 3 or 4. Results indicate that a larger prospective study is feasible and has the capacity to examine the influence of biomedical and psychosocial factors on kidney disease progression, use of dialysis and transplantation, and salient personal and economic outcomes. Findings have the potential to provide an evidence base for revising healthcare provision in order to optimize the care of patients with CKD.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Psychosocial factors in adults with chronic kidney disease: characteristics of pilot participants in the Tasmanian Chronic Kidney Disease study","attachmentId":41974882,"attachmentType":"pdf","work_url":"https://www.academia.edu/20230896/Psychosocial_factors_in_adults_with_chronic_kidney_disease_characteristics_of_pilot_participants_in_the_Tasmanian_Chronic_Kidney_Disease_study","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/20230896/Psychosocial_factors_in_adults_with_chronic_kidney_disease_characteristics_of_pilot_participants_in_the_Tasmanian_Chronic_Kidney_Disease_study"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="3" data-entity-id="57776360" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/57776360/Patient_experience_in_systemic_lupus_erythematosus_development_of_novel_patient_reported_symptom_and_patient_reported_impact_measures">Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="42023988" href="https://independent.academia.edu/SusanMathias">Susan Mathias</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Journal of Patient-Reported Outcomes</p><p class="ds-related-work--abstract ds2-5-body-sm">Background: Comprehensive assessment of systemic lupus erythematosus (SLE) and its treatment requires patientreported outcome (PRO) measures to capture impacts and fluctuating symptoms. The objective of this study was to develop PROs, in accordance with the Food and Drug Administration (FDA) PRO Guidance, to assess fluctuations in SLE symptoms and its impact. Methods: Following independent review board approval, six US rheumatology practices recruited patients with SLE to participate in concept elicitation (CE) interviews, in order to identify important SLE symptoms and their impacts. The SLE Symptom Severity Diary (SSD) and SLE Impact Questionnaire (SIQ) were drafted based on CE interview results and clinician input. The PROs were revised based on patient feedback from cognitive debriefing (CD) interviews, clinician feedback, and a translatability assessment. Results: Forty-one patients completed CE interviews. Commonly-reported symptoms included fatigue (98%), joint pain (93%), and rash (88%). The most frequently reported impact was difficulty with chores/housework (61%). Eighteen patients completed CD interviews. The PROs were considered comprehensive, clear, and relevant. The SSD contains 17 items assessing energy/vitality, joint and muscle pain/stiffness/swelling, flu-like symptoms, cognition, numbness/tingling, skin symptoms and hair loss using an 11-point numeric response scale and a 24-h recall period (with the exception of hair loss). It also evaluates steroid status and dose. The SIQ contains 50 items, uses a 5-point Likert scale and a 7-day recall period, to assess disease impacts including patients' ability to make plans, work, and physical/social/emotional functioning. Conclusion: The SSD and SIQ are comprehensive SLE-specific PROs developed in accordance with the FDA PRO Guidance. Following assessment of their measurement properties, they may be useful in clinical studies and clinical practice to measure fluctuations in, and the impact of, symptoms in patients with SLE.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Patient experience in systemic lupus erythematosus: development of novel patient-reported symptom and patient-reported impact measures","attachmentId":72510517,"attachmentType":"pdf","work_url":"https://www.academia.edu/57776360/Patient_experience_in_systemic_lupus_erythematosus_development_of_novel_patient_reported_symptom_and_patient_reported_impact_measures","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/57776360/Patient_experience_in_systemic_lupus_erythematosus_development_of_novel_patient_reported_symptom_and_patient_reported_impact_measures"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="4" data-entity-id="97701156" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/97701156/Generation_of_evidence_supporting_the_content_validity_of_SF_36_FACIT_F_and_LupusQoL_and_novel_patient_reported_symptom_items_for_use_in_patients_with_systemic_lupus_erythematosus_SLE_and_SLE_with_lupus_nephritis_LN_">Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN)</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="254128719" href="https://independent.academia.edu/MelissaBarclay6">Melissa Barclay</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Lupus Science &amp; Medicine</p><p class="ds-related-work--abstract ds2-5-body-sm">ObjectiveSLE and lupus nephritis (LN) have significant impacts on the health-related quality of life of patients living with the condition, which are important to capture from the patient’s perspective using patient-reported outcomes (PROs). The objectives of this study were to evaluate the content validity of PROs commonly used in SLE and LN (36-Item Short Form Health Survey (SF-36), Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) and Lupus Quality of Life (LupusQoL), as well as novel PRO symptom severity items measuring skin rash, joint pain, joint stiffness and swelling of the legs and/or feet, in both populations.MethodsQualitative, semi-structured, cognitive interviews were conducted with 48 participants (SLE=28, LN=20). Understanding and relevance of symptom and impact PRO concepts from existing PROs were assessed, alongside novel PRO symptom severity items with different recall periods (24 hours vs 7 days) and response scales (Numerical Rating Scale (NRS) v...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN)","attachmentId":99251854,"attachmentType":"pdf","work_url":"https://www.academia.edu/97701156/Generation_of_evidence_supporting_the_content_validity_of_SF_36_FACIT_F_and_LupusQoL_and_novel_patient_reported_symptom_items_for_use_in_patients_with_systemic_lupus_erythematosus_SLE_and_SLE_with_lupus_nephritis_LN_","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/97701156/Generation_of_evidence_supporting_the_content_validity_of_SF_36_FACIT_F_and_LupusQoL_and_novel_patient_reported_symptom_items_for_use_in_patients_with_systemic_lupus_erythematosus_SLE_and_SLE_with_lupus_nephritis_LN_"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="5" data-entity-id="62217711" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/62217711/What_Patients_with_Mild_to_Moderate_Kidney_Disease_Know_Think_and_Feel_about_Their_Disease_An_In_Depth_Interview_Study">What Patients with Mild-to-Moderate Kidney Disease Know, Think, and Feel about Their Disease: An In-Depth Interview Study</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="53087178" href="https://independent.academia.edu/WimdeGrauw">Wim de Grauw</a></div><p class="ds-related-work--metadata ds2-5-body-xs">The Journal of the American Board of Family Medicine</p><p class="ds-related-work--abstract ds2-5-body-sm">It is unknown what patients in primary care with mild-to-moderate chronic kidney disease (CKD) know, think, and feel about their diagnoses and how they value the information provided. The aim of the study was to explore their knowledge, thoughts, and experiences concerning their CKD and the information given to them. Method: Qualitative interview study with patients with mild-to-moderate CKD who know their diagnoses and are treated mainly by family physicians. Results: Four themes arose: CKD literacy, coping with anxiety, prerequisites for self-management, and reciprocity in information provision. The participants filled deficiencies in their CKD knowledge with misconceptions and half-truth about causes, symptoms, and treatment. The anxiety about CKD at the time of diagnosis versus the feeling of irrelevance later on was due to the absence of CKD symptoms and their physicians' minimization of the seriousness of CKD. Participants failed to connect lifestyle and cardiovascular disease with CKD. Not all participants were well informed about the consequences that CKD might have. CKD literacy and willingness to change were both necessary to accept lifestyle changes. Further, the participants felt that it would be helpful when information comes with empathy and is tailored to patients' personal needs. Conclusions: Patients have various perceptions about their CKD. Exploring these perceptions could help match their needs with better-tailored information. Doctors should be aware that they can deliver inaccurate signals about CKD severity, so that patients fail to realize the potential impact of CKD. This makes them less open to lifestyle changes and improving their self-management. (</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"What Patients with Mild-to-Moderate Kidney Disease Know, Think, and Feel about Their Disease: An In-Depth Interview Study","attachmentId":75051253,"attachmentType":"pdf","work_url":"https://www.academia.edu/62217711/What_Patients_with_Mild_to_Moderate_Kidney_Disease_Know_Think_and_Feel_about_Their_Disease_An_In_Depth_Interview_Study","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/62217711/What_Patients_with_Mild_to_Moderate_Kidney_Disease_Know_Think_and_Feel_about_Their_Disease_An_In_Depth_Interview_Study"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="6" data-entity-id="41797897" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/41797897/Patient_reported_outcome_measures_selection_of_a_valid_questionnaire_for_routine_symptom_assessment_in_patients_with_advanced_chronic_kidney_disease_a_four_phase_mixed_methods_study">Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease -a four-phase mixed methods study</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="3148817" href="https://leidenuni.academia.edu/YvetteMeuleman">Yvette Meuleman</a><span>, </span><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="145405609" href="https://independent.academia.edu/EWillik">Esmee van der Willik</a></div><p class="ds-related-work--metadata ds2-5-body-xs">BMC Nephrology, 2019</p><p class="ds-related-work--abstract ds2-5-body-sm">Background: Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease -a four-phase mixed methods study","attachmentId":61948008,"attachmentType":"pdf","work_url":"https://www.academia.edu/41797897/Patient_reported_outcome_measures_selection_of_a_valid_questionnaire_for_routine_symptom_assessment_in_patients_with_advanced_chronic_kidney_disease_a_four_phase_mixed_methods_study","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/41797897/Patient_reported_outcome_measures_selection_of_a_valid_questionnaire_for_routine_symptom_assessment_in_patients_with_advanced_chronic_kidney_disease_a_four_phase_mixed_methods_study"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="7" data-entity-id="111555807" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/111555807/Understanding_Health_Related_Quality_of_Life_in_Kidney_Transplant_Recipients_The_Role_of_Symptom_Experience_and_Illness_Perceptions">Understanding Health-Related Quality of Life in Kidney Transplant Recipients: The Role of Symptom Experience and Illness Perceptions</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="3148817" href="https://leidenuni.academia.edu/YvetteMeuleman">Yvette Meuleman</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Transplant International, 2023</p><p class="ds-related-work--abstract ds2-5-body-sm">To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design: Cross-sectional survey data collected through an online data capture platform. Setting: A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center. Participants: Caregivers (NZ560) of civilians (nZ344) and service member/veterans (SMVs) (nZ216) with TBI. Intervention: Not applicable. Main Outcome Measures: PROMIS sleep and fatigue measures administered as both computerized adaptive tests (CATs) and 4-item short forms (SFs). Results: For both samples, floor and ceiling effects for the PROMIS measures were low (<11%), internal consistency was very good (all a!0.80), and test-retest reliability was acceptable (all r!0.70 except for the fatigue CAT in the SMV sample rZ0.63). Convergent validity was supported by moderate correlations between the PROMIS and related measures. Discriminant validity was supported by low correlations between PROMIS measures and measures of dissimilar constructs. PROMIS scores indicated significantly worse sleep and fatigue for those caring for someone with high levels versus low levels of impairment. Conclusions: Findings support the reliability and validity of the PROMIS CAT and SF measures of sleep disturbance and fatigue in caregivers of civilians and SMVs with TBI.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Understanding Health-Related Quality of Life in Kidney Transplant Recipients: The Role of Symptom Experience and Illness Perceptions","attachmentId":109060754,"attachmentType":"pdf","work_url":"https://www.academia.edu/111555807/Understanding_Health_Related_Quality_of_Life_in_Kidney_Transplant_Recipients_The_Role_of_Symptom_Experience_and_Illness_Perceptions","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/111555807/Understanding_Health_Related_Quality_of_Life_in_Kidney_Transplant_Recipients_The_Role_of_Symptom_Experience_and_Illness_Perceptions"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="8" data-entity-id="77854890" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/77854890/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study">Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="222133964" href="https://independent.academia.edu/KatarinaHedman">Katarina Hedman</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Journal of Medical Internet Research, 2020</p><p class="ds-related-work--abstract ds2-5-body-sm">Background Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were c...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study","attachmentId":85103729,"attachmentType":"pdf","work_url":"https://www.academia.edu/77854890/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/77854890/Characteristics_Symptom_Severity_and_Experiences_of_Patients_Reporting_Chronic_Kidney_Disease_in_the_PatientsLikeMe_Online_Health_Community_Retrospective_and_Qualitative_Study"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="9" data-entity-id="22993503" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/22993503/Interviewing_to_develop_Patient_Reported_Outcome_PRO_measures_for_clinical_research_eliciting_patients_experience">Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="5235450" href="https://independent.academia.edu/CatherineAcquadro">Catherine Acquadro</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Health and Quality of Life Outcomes, 2014</p><p class="ds-related-work--abstract ds2-5-body-sm">Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients' experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. A clear definition of what is a qualitative research interview is given as well as information about the form and content of qualitative interviews required for developing PRO measures. Particular attention is paid to the description of interviewing approaches (e.g., semi-structured and in-depth interviews, individual vs. focus group interviews). Information about how to get prepared for a qualitative interview is provided with the description of how to develop discussion guides for exploratory or cognitive interviews. Interviewing patients to obtain knowledge regarding their illness experience requires interpersonal and communication skills to facilitate patients' expression. Those skills are described in details, as well as the skills needed to facilitate focus groups and to interview children, adolescents and the elderly. Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience","attachmentId":43509607,"attachmentType":"pdf","work_url":"https://www.academia.edu/22993503/Interviewing_to_develop_Patient_Reported_Outcome_PRO_measures_for_clinical_research_eliciting_patients_experience","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/22993503/Interviewing_to_develop_Patient_Reported_Outcome_PRO_measures_for_clinical_research_eliciting_patients_experience"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div></div></div><div class="ds-sticky-ctas--wrapper js-loswp-sticky-ctas hidden"><div class="ds-sticky-ctas--grid-container"><div class="ds-sticky-ctas--container"><button class="ds2-5-button js-swp-download-button" data-signup-modal="{"location":"continue-reading-button--sticky-ctas","attachmentId":87781577,"attachmentType":"pdf","workUrl":null}">See full PDF</button><button class="ds2-5-button ds2-5-button--secondary js-swp-download-button" data-signup-modal="{"location":"download-pdf-button--sticky-ctas","attachmentId":87781577,"attachmentType":"pdf","workUrl":null}"><span class="material-symbols-outlined" style="font-size: 20px" translate="no">download</span>Download PDF</button></div></div></div><div class="ds-below-fold--grid-container"><div class="ds-work--container js-loswp-embedded-document"><div class="attachment_preview" data-attachment="Attachment_87781577" style="display: none"><div class="js-scribd-document-container"><div class="scribd--document-loading js-scribd-document-loader" style="display: block;"><img alt="Loading..." src="//a.academia-assets.com/images/loaders/paper-load.gif" /><p>Loading Preview</p></div></div><div style="text-align: center;"><div class="scribd--no-preview-alert js-preview-unavailable"><p>Sorry, preview is currently unavailable. 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