Patient-reported Outcome Measures In Adults Research Articles

The relationship of pain catastrophizing with postoperative patient-reported outcome measures in adults with pre-arthritic hip disease.

The association between preoperative pain catastrophizing and postoperative patient-reported outcome measures of patients with pre-arthritic hip disease was evaluated. All patients scheduled for joint-preserving surgeries of the hip (JPSH) at our institution were approached. Patient demographics (age, sex, body mass index (BMI)), pain intensity (Numeric Pain Scale (NPS)) and pain catastrophizing (Pain Catastrophizing Scale (PCS)) were collected preoperatively. Patient function (12-Item International Hip Outcome Tool (iHot-12)) and physical and mental health (Patient-Reported Outcomes Measurement Information System (PROMIS-10) mental/physical) were collected preoperatively, three-month and one-year postoperatively. The analysis consisted of multivariate linear regression models fitted for continuous scores of outcome measures at three-month and one-year. Correlation between preoperative PCS and iHot-12 was assessed using the Pearson correlation coefficient. A total of 274 patients completed the PCS and were included in the multivariate linear regression models. Most patients were females (66.8%), mean age was 33 (SD 9), mean BMI was 26.5 (SD 5.8) and most were diagnosed with femoro-acetabular impingement (46.0%) and underwent arthroscopy (77.0%). There were statistically significant correlations between PCS and iHot-12 (preoperatively -0.615, P < 0.001; three-month -0.242, P = 0.002). Statistically significant associations were found for function (three-month PCS P = 0.046, age P = 0.014, NPS P = 0.043; one-year BMI P = 0.005, NPS P = 0.014), physical health (three-month BMI, P = 0.002, NPS P = 0.008; one-year BMI P = 0.002, NPS P = 0.013) and mental health (three-month BMI P = 0.047; one-year BMI P = 0.030). There is an association between function and preoperative pain catastrophizing in patients with pre-arthritic hip disease undergoing JPSH. When considering confounding variables, preoperative pain catastrophizing is associated with short-term recovery.

Improvements in Health-Related Quality of Life after Exagamglogene Autotemcel in Patients with Transfusion-Dependent Beta-Thalassemia

Background: Transfusion-dependent β-thalassemia (TDT), an inherited hematological disorder which requires life-long, chronic red blood cell transfusion (RBC) and regular iron chelation therapy, has a substantial negative impact on health-related qualify of life (HRQoL). Exagamglogene autotemcel (exa-cel) is a one-time, non-viral, ex vivo CRISPR-Cas9 gene-edited cell therapy in phase 3 clinical trials that has been shown to eliminate the need for RBC transfusions and achieve transfusion independence. Here, we report HRQoL data from a pre-specified interim analysis of the exa-cel CLIMB TDT-111 study. Methods: CLIMB TDT-111 is an ongoing, 24-mo, phase 3 trial of a single dose of exa-cel in patients aged 12-35 years with TDT and a history of ≥100 mL/kg/year or ≥10 U/year of packed RBC transfusions for 2 years prior to screening. Changes in patient-reported outcome (PRO) measures including EuroQol Quality of Life Scale 5 dimensions 5 levels of severity (EQ-5D-5L, including descriptive system and visual analog scale [VAS]) and Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT, including FACT-General [FACT-G] and bone marrow transplant subscale [BMTS]) for adults and the EuroQol Quality of Life Scale 5 dimensions youth (EQ-5D-Y) and Pediatric Quality of Life Inventory (PedsQL) for adolescents were assessed through month 24 as a secondary endpoint in the trial. Data are presented as of 16 January 2023 for the 24 adults (aged ≥18-35 years) and 11 adolescents (aged ≥12 to &amp;lt; 18 years) who had been followed for ≥16 months after exa-cel infusion. Results: Clinically meaningful improvements, exceeding the minimal clinically important difference (MCID) thresholds, were observed in all PRO measures in adults. Baseline mean EQ-5D-5L health utility US index score (n=24, mean [SD]: 0.85 [0.18]) was near the general population norm and in line with baseline scores previously reported for adult patients with TDT. By month 24, both EQ-5D-5L health utility US index scores and EQ VAS scores showed substantial improvement (mean [SD] changes at month 24 [n=15]: 0.12 [0.26] and 10.2 [20.9] points; MCIDs 0.078 and 7 to 10, respectively). FACT-G Total Score improved from baseline by month 12 and was sustained through month 24 (mean [SD] change at month 24 [n=15] 10.3 [17.0] points; MCID 3 to 7), with improvements observed in all 4 subscales (physical, social/family, emotional, and functional well-being). BMTS score improved by month 12 and was sustained through month 24 (mean [SD] change at month 24 [n=15] 6.8 [4.7] points; MCID 2 to 3). For adolescents, EQ VAS scores improved through month 18 (mean [SD] change from baseline 4.8 [6.1] points). Total PedsQL score improved by month 6 and was sustained through month 18 (mean [SD] change from baseline [n=7] 14.1 [9.2] points; MCID 4.36). Physical functioning and psychosocial health scores, sub-components of PedsQL, both showed sustained improvement through month 18 (mean [SD] change [n=7] 19.2 [9.1] and 11.4 [10.9] points; MCID of 6.66 and 5.30 points, respectively). Improvement in psychosocial score was observed in all 3 subscales (social, emotional, and school functioning). Conclusion: Adults and adolescents infused with exa-cel reported sustained and clinically meaningful improvements in their HRQoL, with improvements observed across different instruments and domains, including physical, emotional, social/family and functional well-being and overall health status. These results demonstrate the broad clinical benefits of exa-cel in patients with TDT.

Effect of exercise interventions in adults with cancer receiving palliative care: a systematic review and meta-analysis.

Previous publications showed the effectiveness of exercise in adults with cancer receiving palliative care, but evidence for palliative care research on exercise is lacking. The purpose is to examine the effects of an exercise intervention on exercise capacity, physical function, and patient-reported outcome measures in adults with cancer receiving palliative care. We searched databases including EMBASE, PubMed, and Web of Science from inception until 2021. We used the Cochrane criteria to assess the risk of bias within studies. Using RevMan, mean difference (MD) and 95% confidence intervals or standardized mean difference (SMD) and 95% confidence intervals were calculated. A total of 14 studies and 1034 adults with cancer receiving palliative care are included in this systematic review and meta-analysis. Half of the studies were deemed to have high risk of bias. All of the interventions used aerobic and/or resistance exercises. The results indicated that exercise interventions significantly improved exercise capacity (mean difference: 46.89; 95% confidence interval: 4.51 to 89.26; Z = 2.17; P = 0.03), pain (standardized mean difference: - 0.29; 95% confidence interval: - 0.54 to - 0.03; Z = 2.18; P = 0.03), fatigue (standardized mean difference: - 0.48; 95% confidence interval: - 0.83 to - 0.12; Z = 2.66; P = 0.008), and quality of life (standardized mean difference: 0.23; 95% confidence interval: 0.02 to 0.43; Z = 2.12; P = 0.03). Exercise training, with aerobic exercise, resistance exercise, or combined aerobic and resistance exercise, helps to maintain or improve exercise capacity, pain, fatigue, and quality of life in adults with cancer receiving palliative care.

HIV-Specific Patient-Reported Outcome Measures: A Systematic Review of Psychometric Properties.

The management of people living with HIV/AIDS (PLWHA) is multidimensional and complex. Using patient-reported outcome measures (PROMs) has been increasingly recognized to be the key factor for providing patient-centered healthcare to meet the lifelong needs of PLWHA from diagnosis to death. However, there is currently no consensus on a PROM recommended for healthcare providers and researchers to assess health outcomes in PLWHA. The purpose of this systematic review was to summarize and categorize the available validated HIV-specific PROMs in adult PLWHA and to assess these PROMs using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. This systematic review followed the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. Literature search of three recommended databases (PubMed, Embase, and PsychINFO) was conducted on January 15, 2021. Studies were included if they assessed any psychometric property of HIV-specific PROMs in adult PLWHA and met the eligibility criteria. The PROMs were assessed for nine psychometric properties, evaluated in each included study following the COSMIN methodology by assessing the following: (1) the methodological quality assessed using the COSMIN risk of bias checklist, (2) overall rating of results, (3) level of evidence assessed using the modified Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach, and (4) level of recommendation. A total of 88 PROMs classified into eight categories, assessing the psychometric properties of PROMs for adult PLWHA, were identified in 152 studies including 79213 PLWHA. The psychometric properties of the majority of the included PROMs were rated with insufficient evidence. The PROMs that received Class A recommendation were the Poz Quality of Life, HIV Symptom Index or Symptoms Distress Module of the ACTG, and the People Living with HIV Resilience Scale. In addition, because of lack of evidence, recommendations regarding use could not be made for most of the remaining assessed PROMs (received class B recommendation). This systematic review recommends three PROMs to assess health outcomes in adult PLWHA. However, all these PROMs have some shortcomings. In addition, most of the included PROMs do not have sufficient evidence for assessing their psychometric properties, and require a more comprehensive validation of the psychometric properties in the future to provide more scientific evidence. Thus our findings may provide a reference to the selection of high-quality HIV-specific PROMs by healthcare providers and researchers for clinical practice and research.

Relationships among Clinical Factors and Patient-reported Outcome Measures in Adults with Convergence Insufficiency.

When exploring relationships among clinical measures and patient-reported outcome measures in adults with convergence insufficiency, worse symptoms (Convergence Insufficiency Symptom Survey [CISS] score) seemed to be correlated with worse reading function domain score (Adult Strabismus-20 quality-of-life questionnaire). After treatment, improved symptoms were associated with improved reading function quality of life. This study aimed to explore relationships between clinical measures and patient-reported outcome measures in adults undergoing treatment for symptomatic convergence insufficiency. In a prospective multicenter observational study, we evaluated adults with symptomatic convergence insufficiency (i.e., clinical measures of near exodeviation, receded near point of convergence, reduced near positive fusional vergence; CISS score ≥21). Fifty-seven participants treated with vision therapy/exercises (n = 35) or base-in prism (n = 22) were analyzed. Spearman correlation coefficients ( R ) were used to assess associations among the three clinical measures and patient-reported outcome measures (CISS, Diplopia Questionnaire, four Adult Strabismus-20 quality-of-life domains) before treatment (baseline) and after 10 weeks and 1 year. Associations were interpreted to be present when the lower limit of the 95% confidence interval (CI) was moderate to strong ( R ≥ 0.4). Among multiple exploratory analyses, the only moderate to strong baseline correlation was between worse CISS and worse Adult Strabismus-20 reading function scores ( R = 0.62; 95% CI, 0.43 to 0.76). Regarding change in measures with treatment, the only moderate to strong correlations were between improved CISS and improved Adult Strabismus-20 reading function scores for prism at 10 weeks ( R = 0.78; 95% CI, 0.52 to 0.91) and 1 year ( R = 0.85; 95% CI, 0.65 to 0.94) and for vision therapy/exercises at 1 year ( R = 0.78; 95% CI, 0.57 to 0.89). In exploratory analyses, we found positive correlations between CISS symptom scores and reading function quality-of-life scores. The absence of correlations between symptoms and individual clinical measures is consistent with clinical experience that, in convergence insufficiency, symptoms and clinical findings can be discordant.

The CARe Burn Scale—Adult Form: Identifying the Responsiveness and Minimal Important Difference (MID) Values of a Patient Reported Outcome Measure (PROM) to Assess Quality of Life for Adults with a Burn Injury

The CARe Burn Scales are a suite of burn-specific PROMs for adults, children, young people, and parents affected by burns. This study aimed to determine the responsiveness and minimal important difference (MID) values of the Adult Form for use in adult burn care and research. Participants were recruited by 11 UK Burn Services. They completed online or paper versions of the CARe Burn Scale –Adult Form and a set of appropriate comparison validated measures and anchor questions at baseline (T1, up to 4 weeks post-burn), 3 months (T2), and 6 months post-burn (T3). A total of 269 participants took part at baseline and 226 (84%) were retained at the 6-month follow-up. Spearman’s correlation analysis and effect sizes based on Cohen’s d thresholds were reported and MID values calculated. MID values were created for all subscales and ranged from 4–15. The CARe Burn Scale–Adult Form is responsive to change over time and can therefore be used to reliably inform the management of adults’ burn injury treatment and recovery. It is freely available for clinical and research use.

The development of the PlexiQoL: A patient-reported outcome measure for adults with neurofibromatosis type 1-associated plexiform neurofibromas.

ABSTRACTBackgroundTo develop and validate a patient‐reported outcome (PRO) measure of quality of life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform neurofibromas (pNFs), suitable for use in clinical efficacy trials. The study was conducted in parallel in the UK and US.MethodsQualitative interviews were conducted with patients to generate questionnaire content. Face and content validity of the draft scale was assessed by cognitive debriefing interviews (CDIs). A postal validation survey was conducted to identify the final version of the questionnaire (the PlexiQoL), establish its unidimensionality, and assess its psychometric properties.ResultsThematic analysis was performed on 42 interview transcripts. Thirty‐one CDIs revealed that patients found the draft scale to be comprehensible, relevant, and easy to complete. The postal validation survey was completed by 273 patients. Rasch analysis identified an 18‐item unidimensional scale that showed excellent internal consistency, reproducibility, and sensitivity to differences in patient‐perceived pNF severity, general health, and the use of pain medication.ConclusionsThe PlexiQoL is the first disease‐specific PRO assessing the ability of adults with NF‐1 associated pNFs to meet their basic human needs. Clinical trials are planned to assess the sensitivity to change of the PlexiQoL in people undergoing treatment for pNFs.

RESPONSIVENESS OF THE DYSPNEA MANAGEMENT QUESTIONNAIRE COMPUTER ADAPTIVE TEST (DMQ-CAT) FOLLOWING PULMONARY REHABILITATION

SESSION TITLE: Pulmonary Rehabilitation Posters SESSION TYPE: Original Investigation Posters PRESENTED ON: October 18-21, 2020 PURPOSE: The Dyspnea Management Questionnaire Computer Adaptive Test (DMQ-CAT) is a recently developed dyspnea patient-reported outcome measure for adults with chronic obstructive pulmonary disease (COPD). The study purpose was to establish the responsiveness and minimal detectable change (MDC) of the DMQ-CAT. METHODS: A prospective, multicenter observational study of 90 subjects with COPD, with repeated measures before and after outpatient pulmonary rehabilitation (PR), was conducted. Subjects’ mean ±SD of forced expiratory volume in 1 second was 50.49±17.63% predicted (n=84). Data were collected at three outpatient PR centers; PR programs had durations between 8 and 12 weeks. The DMQ-CAT, Chronic Respiratory Questionnaire (CRQ), modified Medical Research Council scale (mMRC), Borg scale (0–10), and University of California, San Diego Shortness of Breath Questionnaire (UCSD) were concurrently administered to compare responsiveness. Previously established test-retest reliability coefficients for dyspnea measures were used to calculate the MDC at the 90% confidence interval (MDC-90). RESULTS: DMQ-CAT scale change scores correlated significantly with change scores of the CRQ and UCSD (r=0.3–0.58). The DMQ-CAT demonstrated comparable responsiveness to change relative to other widely used dyspnea measures. There were no statistically significant differences in effect sizes across instruments. The effect sizes (95% CI) of PR using the DMQ-CAT were 0.67 (0.44,0.96) for Anxiety, 0.63 (0.41,0.91) for Activity Avoidance, 0.64 (0.42,0.88) for Intensity, and 0.60 (0.37,0.88) for Self-efficacy. PR effect sizes using comparison measures were 0.51–0.75 for CRQ, -0.45 for mMRC, -0.42 for Borg, and -0.59 for UCSD. Standard error of measurement (SEM) for DMQ-CAT were 1.99 for Anxiety, 1.73 for Activity Avoidance, 3.21 for Intensity, and 3.56 for Self-efficacy. Distribution-based MDC-90 threshold values of the DMQ-CAT were 4.6 for Anxiety, 4.0 for Activity Avoidance, 7.5 for Intensity, and 8.3 for Self-efficacy. CONCLUSIONS: Results support the responsiveness of the DMQ-CAT for use in both COPD clinical trials and clinical practice to measure multidimensional dyspnea improvement outcomes. The DMQ-CAT is as responsive to pulmonary rehabilitation gains as other widely used dyspnea and quality of life measures. CLINICAL IMPLICATIONS: Newly estimated, distribution-based SEM and MDC-90 can be used to interpret DMQ-CAT outcome scores to determine if the magnitude of changes are beyond measurement error. The selection of a dyspnea outcome measure as a primary endpoint in PR clinical trials depends on the dyspnea domain of interest and hypothesized treatment mechanism(s). DISCLOSURES: Consultant relationship with GlaxoSmithKline Please note: $5001 - $20000 by Ravi Kalhan, source=Admin input, value=Consulting fee Speaker/Speaker's Bureau relationship with GlaxoSmithKline Please note: $5001 - $20000 by Ravi Kalhan, source=Admin input, value=Royalty Consultant relationship with Boehringer Ingelheim Please note: $5001 - $20000 by Ravi Kalhan, source=Admin input, value=Consulting fee Consultant relationship with AstraZeneca Please note: $5001 - $20000 by Ravi Kalhan, source=Admin input, value=Consulting fee Consultant relationship with Boston Scientific Please note: $5001 - $20000 by Ravi Kalhan, source=Admin input, value=Consulting fee Advisory Committee Member relationship with Pfizer Please note: $20001 - $100000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Grant/Research Support Advisory Committee Member relationship with Micelle Please note: $1001 - $5000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Consulting fee Site PI for clinical trial relationship with Bayer Please note: $5001 - $20000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Grant/Research Support Site PI for clinical trial relationship with Actelion Please note: $5001 - $20000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Grant/Research Support Site PI for clinical trial relationship with Reata Please note: $5001 - $20000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Grant/Research Support site PI for clinical trial relationship with Arena/United Therapeutics Please note: $5001 - $20000 Added 02/14/2020 by Elizabeth Klings, source=Web Response, value=Grant/Research Support Research support relationship with Novartis Please note: $5001 - $20000 Added 07/10/2020 by Elizabeth Klings, source=Web Response, value=Consulting fee No relevant relationships by Kyle MacDonald, source=Web Response No relevant relationships by Pengsheng Ni, source=Web Response No relevant relationships by Anna Norweg, source=Web Response No relevant relationships by Jonathan Whiteson, source=Web Response

The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV

BackgroundPeople living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care. Routine use of patient reported outcome measures can improve outcomes. There is no brief patient reported outcome measure (PROM) that currently reflects the breadth of concerns for people living with HIV. This study aimed to develop and cognitively test a brief novel patient reported outcome measure for use within routine adult HIV care– the “Positive Outcomes” HIV PROM.MethodsDevelopment followed the COSMIN taxonomy and guidance for relevance and comprehensiveness, and Rothrock guidance on development of valid patient reported outcome measures. The Positive Outcomes HIV PROM was developed by a steering group (people living with HIV, HIV professionals and health services researchers) using findings from a previously reported qualitative study of priority outcomes for people living with HIV. The prototype measure was cognitively tested with a purposive sample of people living with HIV.ResultsThe Positive Outcomes HIV PROM consists of 23 questions (22 structured, and one open question) informed by the priorities of key stakeholders (n = 28 people living with HIV, n = 21 HIV professionals and n = 8 HIV commissioners) to ensure face and content validity, and refined through cognitive testing (n = 6 people living with HIV). Cognitive testing demonstrated high levels of acceptability and accessibility.ConclusionsThe Positive Outcomes HIV PROM is the first brief patient reported outcome measure reflecting the diverse needs of people living with HIV designed specifically for use in the clinical setting to support patient assessment and care, and drive service quality improvement. It is derived from primary data on the priority outcomes for people living with HIV and is comprehensive and acceptable. Further psychometric testing is required to ensure reliability and responsiveness.

Patient-derived questionnaire items for patient-reported outcome measures in adults with strabismus

In a previous study we performed individual interviews of adults with strabismus and identified specific health-related quality of life concerns. In this present report we provide the entire list of specific questionnaire items that were created, one for each concern articulated in the interviews. Our aim in reporting this full list of 181 individual, patient-derived questionnaire items is to provide a resource to clinicians and researchers interested in developing patient-reported outcome measures for adults with strabismus.

Preliminary Psychometric Evaluation of the Brachial Assessment Tool Part 2: Construct Validity and Responsiveness

ObjectivesTo evaluate construct validity and responsiveness of the Brachial Assessment Tool (BrAT), a new patient-reported outcome measure for people with traumatic brachial plexus injury (BPI), and to compare it to the Disabilities of the Arm, Shoulder and Hand (DASH) and the Upper Extremity Functional Index (UEFI). DesignCross-sectional study. SettingOutpatient clinics. ParticipantsAdults (N=29; age range, 20–69y) with confirmed traumatic BPI. InterventionsParticipants completed the BrAT 3 times over an 18-month period together with 16 DASH activity items and the UEFI. Evaluations were undertaken of construct validity, known-groups validity, 1-way repeated analysis of variance, and effect size. Main Outcome MeasuresBrAT, DASH, and UEFI. ResultsThe BrAT demonstrated a moderate to low correlation with the DASH activity items (<0.7) and a large correlation with the UEFI (>0.7). According to known-groups validity, only the BrAT was able to discriminate between people who stated they could use their hand versus those who were unable to use their hand to perform activities. All measures indicated a significant effect for time with the exception of BrAT subscale 1. The effect size was highest for the BrAT but lower than expected (BrAT, .52–.40; DASH, .15; UEFI, .36). ConclusionsThese preliminary findings support the BrAT as a valid and responsive patient-reported outcome measure for adults with traumatic BPI. The BrAT activity items appear to be more targeted than the DASH or UEFI particularly for people with more severe BPI. The BrAT also appears to be measuring a different activity construct than the DASH and the UEFI. Further work is required to confirm these results with larger sample sizes.

Psychometric Evaluation of the Brachial Assessment Tool Part 1: Reproducibility

ObjectiveTo evaluate reproducibility (reliability and agreement) of the Brachial Assessment Tool (BrAT), a new patient-reported outcome measure for adults with traumatic brachial plexus injury (BPI). DesignProspective repeated-measure design. SettingOutpatient clinics. ParticipantsAdults with confirmed traumatic BPI (N=43; age range, 19–82y). InterventionsPeople with BPI completed the 31-item 4-response BrAT twice, 2 weeks apart. Results for the 3 subscales and summed score were compared at time 1 and time 2 to determine reliability, including systematic differences using paired t tests, test retest using intraclass correlation coefficient model 1,1 (ICC1,1), and internal consistency using Cronbach α. Agreement parameters included standard error of measurement, minimal detectable change, and limits of agreement. Main Outcome MeasureBrAT. ResultsTest-retest reliability was excellent (ICC1,1=.90–.97). Internal consistency was high (Cronbach α=.90–.98). Measurement error was relatively low (standard error of measurement range, 3.1–8.8). A change of >4 for subscale 1, >6 for subscale 2, >4 for subscale 3, and >10 for the summed score is indicative of change over and above measurement error. Limits of agreement ranged from ±4.4 (subscale 3) to 11.61 (summed score). ConclusionsThese findings support the use of the BrAT as a reproducible patient-reported outcome measure for adults with traumatic BPI with evidence of appropriate reliability and agreement for both individual and group comparisons. Further psychometric testing is required to establish the construct validity and responsiveness of the BrAT.

Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review

BackgroundPatient-reported outcome measures (PROMs) can provide valuable information which may assist with the care of patients with chronic kidney disease (CKD). However, given the large number of measures available, it is unclear which PROMs are suitable for use in research or clinical practice. To address this we comprehensively evaluated studies that assessed the measurement properties of PROMs in adults with CKD.MethodsFour databases were searched; reference list and citation searching of included studies was also conducted. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to appraise the methodological quality of the included studies and to inform a best evidence synthesis for each PROM.ResultsThe search strategy retrieved 3,702 titles/abstracts. After 288 duplicates were removed, 3,414 abstracts were screened and 71 full-text articles were retrieved for further review. Of these, 24 full-text articles were excluded as they did not meet the eligibility criteria. Following reference list and citation searching, 19 articles were retrieved bringing the total number of papers included in the final analysis to 66. There was strong evidence supporting internal consistency and moderate evidence supporting construct validity for the Kidney Disease Quality of Life-36 (KDQOL-36) in pre-dialysis patients. In the dialysis population, the KDQOL-Short Form (KDQOL-SF) had strong evidence for internal consistency and structural validity and moderate evidence for test-retest reliability and construct validity while the KDQOL-36 had moderate evidence of internal consistency, test-retest reliability and construct validity. The End Stage Renal Disease-Symptom Checklist Transplantation Module (ESRD-SCLTM) demonstrated strong evidence for internal consistency and moderate evidence for test-retest reliability, structural and construct validity in renal transplant recipients.ConclusionsWe suggest considering the KDQOL-36 for use in pre-dialysis patients; the KDQOL-SF or KDQOL-36 for dialysis patients and the ESRD-SCLTM for use in transplant recipients. However, further research is required to evaluate the measurement error, structural validity, responsiveness and patient acceptability of PROMs used in CKD.

Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: a systematic review protocol

IntroductionChronic kidney disease (CKD) is associated with symptoms that can significantly reduce the quality of life (QoL) of patients. Patient-reported outcome measures (PROMs) may facilitate the assessment of the impact...

Patient-Reported Outcome Measures in Adults with Hand Trauma: A Systematic Review

Patient-Reported Outcome Measures in Adults with Hand Trauma: A Systematic Review