ObjectivesPatient-reported outcome measures (PROMs) are often used to evaluate the outcome of treatment in patients with distal radial fractures. Which PROM to select is often based on assessment of measurement properties, such as validity and reliability. Measurement properties are assessed in clinimetric studies, and results are often reviewed without considering the methodological quality of these studies. Our aim was to systematically review the methodological quality of clinimetric studies that evaluated measurement properties of PROMs used in patients with distal radial fractures, and to make recommendations for the selection of PROMs based on the level of evidence of each individual measurement property.MethodsA systematic literature search was performed in PubMed, EMbase, CINAHL and PsycINFO databases to identify relevant clinimetric studies. Two reviewers independently assessed the methodological quality of the studies on measurement properties, using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Level of evidence (strong / moderate / limited / lacking) for each measurement property per PROM was determined by combining the methodological quality and the results of the different clinimetric studies.ResultsIn all, 19 out of 1508 identified unique studies were included, in which 12 PROMs were rated. The Patient-rated wrist evaluation (PRWE) and the Disabilities of Arm, Shoulder and Hand questionnaire (DASH) were evaluated on most measurement properties. The evidence for the PRWE is moderate that its reliability, validity (content and hypothesis testing), and responsiveness are good. The evidence is limited that its internal consistency and cross-cultural validity are good, and its measurement error is acceptable. There is no evidence for its structural and criterion validity. The evidence for the DASH is moderate that its responsiveness is good. The evidence is limited that its reliability and the validity on hypothesis testing are good. There is no evidence for the other measurement properties.ConclusionAccording to this systematic review, there is, at best, moderate evidence that the responsiveness of the PRWE and DASH are good, as are the reliability and validity of the PRWE. We recommend these PROMs in clinical studies in patients with distal radial fractures; however, more clinimetric studies of higher methodological quality are needed to adequately determine the other measurement properties.Cite this article: Dr Y. V. Kleinlugtenbelt. Are validated outcome measures used in distal radial fractures truly valid?: A critical assessment using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Bone Joint Res 2016;5:153–161. DOI: 10.1302/2046-3758.54.2000462.
Background Patients benefit from access to their medical records. However, clinical notes and letters are often difficult to comprehend for most lay people. Therefore, functionality was implemented in the patient portal of a Dutch university medical centre (UMC) to clarify medical terms in free-text data. The clarifications consisted of synonyms and definitions from a Dutch medical terminology system. We aimed to evaluate to what extent these lexical clarifications match the information needs of the patients. Secondarily, we evaluated how the clarifications and the functionality could be improved. Methods We invited participants from the patient panel of the UMC to read their own clinical notes. They marked terms they found difficult and rated the ease of these terms. After the functionality was activated, participants rated the clarifications provided by the functionality, and the functionality itself regarding ease and usefulness. Ratings were on a scale from 0 (very difficult) to 100 (very easy). We calculated the median number of terms not understood per participant, the number of terms with a clarification, the overlap between these numbers (coverage), and the precision and recall. Results We included 15 participants from the patient panel. They marked a median of 21 (IQR 19.5–31) terms as difficult in their text files, while only a median of 2 (IQR 1–4) of these terms were clarified by the functionality. The median precision was 6.5% (IQR 2.3–14.25%) and the median recall 8.3% (IQR 4.7–13.5%) per participant. However, participants rated the functionality with median ease of 98 (IQR 93.5–99) and a median usefulness of 79 (IQR 52.5–97). Participants found that many easy terms were unnecessarily clarified, that some clarifications were difficult, and that some clarifications contained mistakes. Conclusions Patients found the functionality easy to use and useful. However, in its current form it only helped patients to understand few terms they did not understand, patients found some clarifications to be difficult, and some to be incorrect. This shows that lexical clarification is feasible even when limited terms are available, but needs further development to fully use its potential.
Background Patient access to electronic health records (EHRs) is associated with increased patient engagement and health care quality outcomes. However, the adoption of patient portals and personal health records (PHRs) that facilitate this access is impeded by barriers. The Clinical Adoption Framework (CAF) has been developed to analyze EHR adoption, but this framework does not consider the patient as an end-user. Objective We aim to extend the scope of the CAF to patient access to EHRs, develop guidance documentation for the application of the CAF, and assess the interrater reliability. Methods We systematically reviewed existing systematic reviews on patients' access to EHRs and PHRs. Results of each review were mapped to one of the 43 CAF categories. Categories were iteratively adapted when needed. We measured the interrater reliability with Cohen’s unweighted kappa and statistics regarding the agreement among reviewers on mapping quotes of the reviews to different CAF categories. Results We further defined the framework’s inclusion and exclusion criteria for 33 of the 43 CAF categories and achieved a moderate agreement among the raters, which varied between categories. Conclusions In the reviews, categories about people, organization, system quality, system use, and the net benefits of system use were addressed more often than those about international and regional information and communication technology infrastructures, standards, politics, incentive programs, and social trends. Categories that were addressed less might have been underdefined in this study. The guidance documentation we developed can be applied to systematic literature reviews and implementation studies, patient and informal caregiver access to EHRs, and the adoption of PHRs.
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