scholarly journals Evaluation of PROMIS Preference Scoring System (PROPr) in Patients Undergoing Hemodialysis or Kidney Transplant

2021 ◽  
pp. CJN.01880221
Author(s):  
Jing Zhang ◽  
Barry Dewitt ◽  
Evan Tang ◽  
Daniel Breitner ◽  
Mohammed Saqib ◽  
...  
Keyword(s):  
Construct Validity ◽  
Replacement Therapy ◽  
Kidney Transplant ◽  
Short Form ◽  
Health Condition ◽  
Measurement Information ◽  
Kidney Transplant Recipients ◽  
Cross Sectional ◽  
Patient Reported ◽  
Kidney Replacement Therapy

Background and Objectives A preference-based health utility score (PROPr) can be calculated using Patient-Reported Outcomes Measurement Information System domain scores. We assessed the construct validity of PROPr among patients treated with kidney replacement therapy (hemodialysis or kidney transplant). Design, setting, participants and measurements Secondary analysis of data collected in multicenter, cross-sectional studies of adults treated with kidney replacement therapy, recruited between April 2016 to March 2020 in Toronto, Canada. All participants provided informed consent. The outcome was PROPr score. Co-administered outcome variables included the Short form 6-domain (SF-6D) and EuroQol 5-domain 5-level (EQ-5D-5L) scores. Socioeconomic and clinical variables included age, sex, diabetes, estimated Glomerular Filtration Rate (eGFR), serum albumin, hemoglobin, kidney replacement therapy and Charlson-comorbidity index. Construct validity was assessed through correlations between PROPr and SF-6D or EQ-5D-5L and associations between PROPr and other exposure variables. Health condition impact estimates (coefficients for health conditions compared to a referent category: e.g. dialysis vs kidney transplant) were calculated using multivariable linear regression. Results Mean (SD) age of the 524 participants was 57 (17) years, 58% were male and 45% white. Median (IQR) score was 0.39 (0.24-0.58) for PROPr, 0.69 (0.58-0.86) for SF-6D and 0.85 (0.70-0.91) for EQ-5D-5L. Large correlations were observed between PROPr vs SF-6D (0.79, 95%CI: 0.76 - 0.82) and EQ-5D-5L (0.71, 95%CI: 0.66 - 0.75). Both PROPr and the other utility indices demonstrated health condition impact in the expected direction. For example, the estimate for PROPr was -0.17 (95%CI: -0.13, -0.21) for dialysis (versus kidney transplant), -0.05 (95%CI: -0.11, 0.01, P=0.08) for kidney transplant recipients with eGFR <45 vs ≥45 ml/min/1.73m2 and -0.28 (95%CI: -0.22, -0.33) for moderate/severe versus no/mild depressive symptoms. Conclusions Our results support the validity of PROPr among patients treated with kidney replacement therapy.

scholarly journals Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e047263
Author(s):  
Andrea Gibbons ◽  
Janet Bayfield ◽  
Marco Cinnirella ◽  
Heather Draper ◽  
Rachel J Johnson ◽  
...  
Keyword(s):  
Kidney Transplant ◽  
Outcome Measures ◽  
Deceased Donor ◽  
Patient Reported Outcome Measures ◽  
Transplant Recipients ◽  
Kidney Transplant Recipients ◽  
Structured Interviews ◽  
Cross Sectional ◽  
Post Transplant ◽  
Patient Reported

ObjectiveTo examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation.DesignLongitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach.SettingCompletion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide.Participants101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews.ResultsLD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (p<0.01) pre-transplant to post-transplant. Patients on the WL had worsened health status but no change in QoL. Qualitative analyses revealed transplant recipients’ expectations influenced their recovery and satisfaction with transplant.ConclusionsWhile cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients’ adjustment post-transplant.

scholarly journals FC 028COVID-19 RELATED MORTALITY IN KIDNEY TRANSPLANT AND DIALYSIS PATIENTS: A COMPARATIVE, PROSPECTIVE REGISTRY BASED STUDY

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Alexandre Candellier ◽  
Eric Jean Goffin ◽  
Priya Vart ◽  
Marlies Noordzij ◽  
Miha Arnol ◽  
...  
Keyword(s):  
Kidney Transplantation ◽  
Replacement Therapy ◽  
Kidney Transplant ◽  
Hemodialysis Patients ◽  
Cox Proportional Hazards ◽  
Elderly Subjects ◽  
Transplant Recipients ◽  
Kidney Transplant Recipients ◽  
Kidney Replacement Therapy ◽  
Adjusted Model

Abstract Background and Aims Studies examining kidney failure patients with COVID-19 reported higher mortality in hemodialysis patients than in kidney transplant recipients. However, hemodialysis patients are often older and have more comorbidities. This study investigated the association of type of kidney replacement therapy with COVID-19 severity adjusting for differences in characteristics. Method Data were retrieved from the European Renal Association COVID-19 Database (ERACODA), which includes kidney replacement therapy patients diagnosed with COVID-19 from all over Europe. We included all kidney transplant recipients and hemodialysis patients who presented between February 1st and December 1st 2020 and had complete information reason for COVID-19 screening and vital status at day 28. The diagnosis of COVID-19 was made based on a PCR of a nasal or pharyngeal swab specimens and/or COVID-19 compatible findings on a lung CT scan. The association of kidney transplantation or hemodialysis with 28-day mortality was examined using Cox proportional-hazards regression models adjusted for age, sex, frailty and comorbidities. Additionally, this association was investigated in the subsets of patients that were screened because of symptoms or have had routine screening. Results A total of 1,670 patients (496 functional kidney transplant recipients and 1,174 hemodialysis patients) were examined. 16.9% of kidney transplant recipients and 23.9% of hemodialysis patients died within 28 days of presentation. In an unadjusted model, the risk of 28-day mortality was 33% lower in kidney transplant recipients compared with hemodialysis patients (hazard ratio (HR): 0.67, 95% CI: 0.52, 0.85). However, in an age, sex and frailty adjusted model, the risk of 28-day mortality was 29% higher in kidney transplant recipients (HR=1.29, 95% CI: 1.00, 1.68), whereas in a fully adjusted model the risk was even 43% higher (HR=1.43, 95% CI: 1.06, 1.93). This association in patients who were screened because of symptoms (n=1,145) was similar (fully adjusted model HR=1.46, 95% CI: 1.05, 2.04). Results were similar when other endpoints were studied (e.g. risk for hospitalization, ICU admission or mortality beyond 28 days) as well as across subgroups. Only age was found to interact significantly, suggesting that the increased mortality risk associated with kidney transplantation was especially present in elderly subjects. Conclusion In this study, kidney transplant recipients had a greater risk of a more severe course of COVID-19 compared with hemodialysis patients when adjusted for age, sex and comorbidities.

Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis

2017 ◽  
Vol 2 (3) ◽  
pp. 188-195 ◽  
Author(s):  
Kathleen Morrisroe ◽  
Wendy Stevens ◽  
Molla Huq ◽  
Joanne Sahhar ◽  
Gene-Siew Ngian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Good Alternative ◽  
Measurement Information ◽  
Internal Reliability ◽  
Sf 36 ◽  
Patient Reported

Background We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) in Australian systemic sclerosis (SSc) patients. Methods SSc patients, identified through the Australian Scleroderma Cohort Study database, completed two quality-of-life instruments concurrently, the PROMIS-29 and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). The construct validity of the PROMIS-29 was assessed by the correlations between the PROMIS-29 and the SF-36 and Health Assessment Questionnaire Disability Index (HAQ-DI). Cronbach's alpha was used to test the internal reliability of all instruments in Australian SSc patients and non-parametric correlation, including Spearman's correlation, was used to test the construct validity of PROMIS-29 against the SF-36 and HAQ-DI. Results A total of 477 completed questionnaires were returned, equating to a response rate of 59.6%. The mean (±SD) age of respondents at the time of the survey was 64.1 (±11.1) years. They were predominantly female (87.4%), with limited disease subtype (lcSSc) (77.8%) and long disease duration from onset of first non-Raynaud's phenomenon symptom at the time of survey (10.9 ± 11.1 years). For the correlation analysis between the PROMIS-29 and the legacy instruments, all Spearman correlation coefficients were in the logical direction and highly significant suggesting that the PROMIS-29 is a good alternative to other validated measures of disease burden. Conclusions Our study indicates that the PROMIS-29 questionnaire is a valid instrument for measuring health-related quality of life in Australian females with lcSSc of long duration.

scholarly journals Measuring Outcomes in Psoriatic Arthritis: Comparing Routine Assessment of Patient Index Data and Psoriatic Arthritis Impact of Disease

2019 ◽  
Vol 47 (10) ◽  
pp. 1496-1505 ◽  
Author(s):  
Jessica A. Walsh ◽  
Marilyn T. Wan ◽  
Christine Willinger ◽  
M. Elaine Husni ◽  
Jose U. Scher ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Construct Validity ◽  
Short Form ◽  
Contextual Factors ◽  
Correlation Coefficients ◽  
Linear Regression Models ◽  
Cross Sectional ◽  
Index Data ◽  
Patient Reported ◽  
Routine Assessment

ObjectiveTo examine the construct validity of Routine Assessment of Patient Index Data 3 (RAPID3) and Psoriatic Arthritis Impact of Disease (PsAID) in patients with psoriatic arthritis (PsA). In examining construct validity, we also addressed scores among subgroups with severe psoriasis, poly articular disease, enthesitis, and dactylitis, and evaluated influences of sociodemographic factors and comorbidities (contextual factors) on these patient-reported outcomes (PRO).MethodsPatients with PsA were enrolled in the Psoriatic Arthritis Research Consortium (PARC) between 2014 and 2016. PARC is a longitudinal observational cohort study conducted at 4 US institutions. In this cross-sectional study, construct validity was assessed by examining Spearman correlation coefficients for RAPID3 and PsAID with physician-reported disease activity measures and other PRO [e.g., Medical Outcomes Study Short Form-12 physical component summary/mental component summary (SF-12 PCS/MCS), Functional Assessment of Chronic Illness Therapy–Fatigue scale (FACIT-F)]. Contextual factors and disease subgroups were assessed in multivariable linear regression models with RAPID3 or PsAID12 as outcomes of interest and the hypothesized contextual factors as covariates.ResultsAmong 401 patients enrolled in PARC, 347 completed RAPID3 or PsAID12. Of these, most were white females with a mean age of 51.7 years (SD 14.02). RAPID3 and PsAID were highly correlated (r = 0.90). These measures were also correlated with the SF-12 PCS (r = −0.67) and FACIT-F (r = −0.77). Important contextual factors and disease subgroups included enthesitis, joint counts, education, insurance type, and depression.ConclusionRAPID3 and PsAID12 have excellent construct validity in PsA and are strongly correlated despite differing items. Contextual factors (i.e., the presence of depression and obesity) should be considered when interpreting raw scores of the RAPID3 and PsAID12.

Measuring Fatigue in Older Adults With Joint Pain: Reliability and Validity Testing of the PROMIS Fatigue Short Forms

2019 ◽  
Vol 27 (3) ◽  
pp. 534-553
Author(s):  
Alisha J. Hackney ◽  
N. Jennifer Klinedinst ◽  
Barbara Resnick
Keyword(s):  
Older Adults ◽  
Psychometric Properties ◽  
Internal Consistency ◽  
Joint Pain ◽  
Short Form ◽  
Outcome Measurement ◽  
Reliability And Validity ◽  
Measurement Information ◽  
Cross Sectional ◽  
Patient Reported

Background and PurposeLimited literature exists regarding the psychometric properties of the Patient-Reported Outcome Measurement Information System (PROMIS) Fatigue Short Form 8a. This study compared the psychometric properties of the 8a to the established PROMIS Fatigue Short Form 7a.MethodsThis was a cross-sectional study of 31 older adults with joint pain. Equivalent forms reliability and a Rasch analysis explored reliability (equivalent forms, internal consistency), validity (unidimensionality, item INFIT/OUTFIT), and additional psychometrics (item mapping).ResultsThe measures were equivalent in measuring fatigue (r = 0.75, p < .001) with good internal consistency (α = .87−.92). Both were unidimensional. Even though the 8a had better fitting items, neither measure could differentiate low levels of fatigue.ConclusionThe 8a has comparable psychometric properties to the 7a in this population. Future work is needed in larger, more diverse samples.

scholarly journals Feasibility and Construct Validation of the Patient Reported Outcomes Measurement Information System in Systemic Vasculitis

2019 ◽  
Vol 46 (8) ◽  
pp. 928-934
Author(s):  
Gunnar Tomasson ◽  
John T. Farrar ◽  
David Cuthbertson ◽  
Carol A. McAlear ◽  
Susan Ashdown ◽  
...  
Keyword(s):  
Information System ◽  
Construct Validity ◽  
Systemic Vasculitis ◽  
Measurement Information ◽  
Cross Sectional ◽  
Item Banks ◽  
Sf 36 ◽  
Patient Reported ◽  
Measurement Information System ◽  
Longitudinal Construct Validity

Objective.The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis.Methods.Data from a multicenter longitudinal cohort of subjects with systemic vasculitis were used. Instruments from 10 PROMIS item banks were selected with direct involvement of patients. Subjects completed PROMIS instruments using computer adaptive testing (CAT). The Medical Outcomes Study Short Form-36 (SF-36) was also administered. Cross-sectional construct validity was assessed by calculating correlations of PROMIS scores with SF-36 measures and physician and patient global scores for disease activity. Longitudinal construct validity was assessed by correlations of between-visit differences in PROMIS scores with differences in other measures.Results.During the study period, 973 subjects came for 2306 study visits and the PROMIS collection was completed at 2276 (99%) of visits. The median time needed to complete each PROMIS instrument ranged from 40 to 55 s. PROMIS instruments correlated cross-sectionally with individual scales of the SF-36, most strongly with subscales of the SF-36 addressing the same domain as the PROMIS instrument. For example, PROMIS fatigue correlated with both the physical component score (PCS; r = −0.65) and with the mental component score (MCS; r = −0.54). PROMIS physical function correlated strongly with PCS (r = 0.81) but weakly with MCS (r = 0.29). Weaker correlations were observed longitudinally between change in PROMIS scores with change in PCS and MCS.Conclusion.Collection of data using CAT PROMIS instruments is feasible among patients with vasculitis and has some cross-sectional and longitudinal construct validity.

scholarly journals FC 027COVID-19 IN PATIENTS ON KIDNEY REPLACEMENT THERAPY - CLINICAL CHARACTERISTICS AT TRIAGE ASSOCIATED WITH ADMISSION, READMISSION AND SHORT-TERM OUTCOMES

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Sandip Mitra ◽  
Anu Jayanti ◽  
Priya Vart ◽  
Armando Coca ◽  
Maurizio Gallieni ◽  
...  
Keyword(s):  
Replacement Therapy ◽  
Kidney Transplant ◽  
Care Pathway ◽  
Initial Assessment ◽  
Pulmonary Insufficiency ◽  
Clinical Approach ◽  
Kidney Transplant Recipients ◽  
Short Term ◽  
Clinical Frailty Scale ◽  
Kidney Replacement Therapy

Abstract Background and Aims Patients on kidney replacement therapy (KRT) are at high risk of developing severe COVID-19 illness and often require high intensity care and utilisation of hospital resources. During the ongoing pandemic, the optimal care pathway and triage for KRT patients presenting with varying severity of COVID-19 illness is unknown. We studied clinical factors and outcomes associated with admission, readmission and short-term outcomes. Method Data from the European Renal Association COVID-19 Database (ERACODA) was analysed. This database includes granular data on dialysis patients and kidney transplant recipients with COVID-19 from all over Europe. The clinical and laboratory features at first presentation of hospitalized and non-hospitalized patients and those who returned for second presentation were studied. In addition, possible predictors of outcome in those who were not hospitalized at first presentation were identified. Results Among 1,423 KRT patients (haemodialysis; 1017/kidney transplant; 406) with COVID-19, 25% (n=355) were not hospitalized at first presentation. Of them, only 10% (n=36), presented for a second time in the hospital. The median interval between the first and second presentation was 5 days (Interquartile interval: 2-7 days). Patients who re-presented had worsening of pulmonary symptoms, a fall in oxygen saturation (97% to 90%), and an increase in C-reactive protein (26 mg/L to 73 mg/L) between their attendances. Patients who re-presented after initial assessment were older (72 vs. 63 years) and initially more often had pulmonary symptoms and abnormalities on lung imaging compared with those who did not present for a second time. The 28-day mortality rate of patients admitted at the second presentation was similar to that of patients admitted at first presentation (26.5% vs. 29.7%, p=0. 61). Among patients who were not hospitalized at first presentation (mortality 6%), age, prior smoking, clinical frailty scale, and shortness of breath at first presentation were identified as predictors of mortality. Conclusion KRT patients with COVID-19 and mild pulmonary abnormalities and no signs of pulmonary insufficiency can be safely returned without hospitalization. These patients should be advised to seek immediate contact when they develop respiratory distress. Our findings provide support for a risk-stratified clinical approach to admissions of KRT patients presenting with COVID-19. The study findings may be valuable for clinical triage and optimising hospital capacity utilisation during the ongoing pandemic.

The Communication Benefits of Participation in Camp Dream. Speak. Live.: An Extension and Replication

2021 ◽  
Vol 42 (02) ◽  
pp. 117-135
Author(s):  
Courtney T. Byrd ◽  
Katherine L. Winters ◽  
Megan Young ◽  
Danielle Werle ◽  
Robyn L. Croft ◽  
...  
Keyword(s):  
Peer Relationships ◽  
Group Treatment ◽  
Short Form ◽  
Kindergarten Children ◽  
Measurement Information ◽  
Psychosocial Needs ◽  
Patient Reported ◽  
Communication Competencies ◽  
Explicit Training ◽  
Parent Proxy

AbstractSchool-based guidelines often require that treatment focuses on minimizing or eliminating stuttered speech. The purpose of this study was to examine the benefits of explicit training in communication competencies to children who stutter without targeting stuttered speech. Thirty-seven children (ages 4–16) completed Camp Dream. Speak. Live., an intensive group treatment program which targets the psychosocial needs and communication of children who stutter. Outcome measures included the Overall Assessment of the Speaker's Experience of Stuttering (OASES), the Communication Attitude Test for Preschool and Kindergarten Children Who Stutter (KiddyCAT), and the Patient Reported Measurement Information System (PROMIS) Pediatric Peer Relationships Short Form (PROMIS Peer Relationships) and Parent Proxy Peer Relationships Short Form (PROMIS Parent Proxy). Pre- and posttreatment public presentations were rated on nine core verbal and nonverbal communication competencies by a neutral observer. Similar to previous studies, participants demonstrated significant improvements in communication attitudes (OASES) and perceived ability to establish peer relationships (PROMIS Peer Relationships), particularly school-aged participants (ages 7–16). Participants also demonstrated significant improvement in eight of the nine communication competencies. Findings suggest that, in addition to the psychosocial gains of programs such as Camp Dream. Speak. Live., children who stutter benefit from explicit training in communication skills, and these gains are not dependent on the presence of stuttered speech.

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