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Author(s): Benjamin R. Fletcher 1, Sarah Damery 2, Olalekan Lee Aiyegbusi 1,2,3, Nicola Anderson 1,4, Melanie Calvert 1,3,5, Paul Cockwell 1,4,6, James Ferguson 1,3, Mike Horton 7, Muirne C. S. [...], Background The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1-5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. Methods and findings MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%-79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%-76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5-45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3-35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5-66.6], p = 0.002; PCS 66.3 [95% CI 66.2-66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9-50.1], p = 0.002; PCS 48.0 [95% CI 47.9-48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. Conclusions The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. Protocol registration PROSPERO CRD42020164737.

The use of empirical prior information about participants has been shown to substantially improve the efficiency of computerized adaptive tests (CATs) in educational settings. However, it is unclear how these results translate to clinical settings, where small item banks with highly informative polytomous items often lead to very short CATs. We explored the risks and rewards of using prior information in CAT in two simulation studies, rooted in applied clinical examples. In the first simulation, prior precision and bias in the prior location were manipulated independently. Our results show that a precise personalized prior can meaningfully increase CAT efficiency. However, this reward comes with the potential risk of overconfidence in wrong empirical information (i.e., using a precise severely biased prior), which can lead to unnecessarily long tests, or severely biased estimates. The latter risk can be mitigated by setting a minimum number of items that are to be administered during the CAT, or by setting a less precise prior; be it at the expense of canceling out any efficiency gains. The second simulation, with more realistic bias and precision combinations in the empirical prior, places the prevalence of the potential risks in context. With similar estimation bias, an empirical prior reduced CAT test length, compared to a standard normal prior, in 68% of cases, by a median of 20%; while test length increased in only 3% of cases. The use of prior information in CAT seems to be a feasible and simple method to reduce test burden for patients and clinical practitioners alike. [ABSTRACT FROM AUTHOR]

It is currently not entirely clear to what degree the research on multidimensional computerized adaptive testing (CAT) conducted in the field of educational testing can be generalized to fields such as health assessment, where CAT design factors differ considerably from those typically used in educational testing. In this study, the impact of a number of important design factors on CAT performance is systematically evaluated, using realistic example item banks for two main scenarios: health assessment (polytomous items, small to medium item bank sizes, high discrimination parameters) and educational testing (dichotomous items, large item banks, small- to medium-sized discrimination parameters). Measurement efficiency is evaluated for both between-item multidimensional CATs and separate unidimensional CATs for each latent dimension. In this study, we focus on fixed-precision (variable-length) CATs because it is both feasible and desirable in health settings, but so far most research regarding CAT has focused on fixed-length testing. This study shows that the benefits associated with fixed-precision multidimensional CAT hold under a wide variety of circumstances. [ABSTRACT FROM AUTHOR]

As there is currently a marked increase in the use of both unidimensional (UCAT) and multidimensional computerized adaptive testing (MCAT) in psychological and health measurement, the main aim of the present study is to assess the incremental value of using MCAT rather than separate UCATs for each dimension. Simulations are based on empirical data that could be considered typical for health measurement: a large number of dimensions (4), strong correlations among dimensions (.77-.87), and polytomously scored response data. Both variable- (SE < .316, SE < .387) and fixed-length conditions (total test length of 12, 20, or 32 items) are studied. The item parameters and variance–covariance matrix Φ are estimated with the multidimensional graded response model (GRM). Outcome variables include computerized adaptive test (CAT) length, root mean square error (RMSE), and bias. Both simulated and empirical latent trait distributions are used to sample vectors of true scores. MCATs were generally more efficient (in terms of test length) and more accurate (in terms of RMSE) than their UCAT counterparts. Absolute average bias was highest for variable-length UCATs with termination rule SE < .387. Test length of variable-length MCATs was on average 20% to 25% shorter than test length across separate UCATs. This study showed that there are clear advantages of using MCAT rather than UCAT in a setting typical for health measurement. [ABSTRACT FROM AUTHOR]

Background Numerous instruments are available to measure HRQoL in patients with COPD, covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning. Currently no information or guide is available yet to aid the selection of domains for a particular study or disease population. The aim of this paper is to identify which domains of health-related quality of life (HRQoL) are most important with respect to Chronic Obstructive Pulmonary Disease (COPD), from the patient perspective. Methods Twenty-one Dutch patients with Chronic Obstructive Pulmonary Disease (COPD) were asked to describe important domains impacted by COPD freely; second, they were presented with cues (domains from the Patient-Reported Outcomes Measurement Information System (PROMIS) framework) and were asked to select the domains that were most relevant to them. During the interview, the patients were asked to indicate in which way the selected domains impact their lives. Both the answers to the open question, and the patient statements motivating nomination of PROMIS domains were coded into themes. Results The most relevant (sub)domains of HRQoL for patients with COPD were: physical health (fatigue, physical functioning), social health (instrumental support, ability to participate in social roles and activities, companionship, and emotional support), and coping with COPD. Conclusion We identified which domains of HRQoL are most important to patients with COPD. One of these (coping with COPD) is not explicitly covered by PROMIS, or by traditional questionnaires that are used to measure HRQoL in COPD. [ABSTRACT FROM AUTHOR]

Five diagnostic criteria sets for pathological grief are currently used in research. Studies evaluating their performance indicate that it is not justified to generalise findings regarding prevalence rates and predictive validity across studies using different diagnostic criteria of pathological grief. We provide recommendations to move the bereavement field forward.