scholarly journals A Systematic Review of Generic Multidimensional Patient-Reported Outcome Measures for Children, Part II: Evaluation of Psychometric Performance of English-Language Versions in a General Population

2015 ◽  
Vol 18 (2) ◽  
pp. 334-345 ◽  
Author(s):  
Astrid Janssens ◽  
Morwenna Rogers ◽  
Jo Thompson Coon ◽  
Karen Allen ◽  
Colin Green ◽  
...  
Author(s):  
Benson S. Chen ◽  
Tomasz Galus ◽  
Stephanie Archer ◽  
Valerija Tadić ◽  
Mike Horton ◽  
...  

Abstract Purpose To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored. Methods Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies). Results Of 1326 unique articles identified, six studies were included. Five PROMs were identified: Visual Function Index (VF-14); Hospital Anxiety and Depression Scale (HADS); a novel graphical online assessment tool (NGOAT) for reporting emotional response to vision loss; a new PROM informed by the DSM-V Criteria for Major Depressive Disorder; and an interpersonal and career ‘impact rating’ PROM. The psychometric performance of included PROMs were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified. Conclusion The current PROMs used by individuals with ION have poor content coverage, primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop a PROM for individuals ION to report their experiences of living with their condition.


Hand ◽  
2021 ◽  
pp. 155894472110386
Author(s):  
Michelle Xiao ◽  
Jessica M. Welch ◽  
Samuel A. Cohen ◽  
Robin N. Kamal ◽  
Lauren M. Shapiro

Background: Abnormal scaphoid alignment after fracture is used as an indication for fixation. Acceptable alignment after reduction and fixation of scaphoid fractures is not well defined. We systematically reviewed the literature to identify how scaphoid malunion is currently defined and by what parameters. Methods: A systematic review was performed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Multiple databases were searched for studies published in the English language that reported on outcomes after scaphoid malunion and included measurements to define malunions. Radiographic scaphoid measurement parameters were collected. Clinical outcome measures recorded included grip strength, wrist range of motion, and patient-reported outcome measures. Study quality was analyzed using the Methodological Index for Non-Randomized Studies (MINORS) criteria. Descriptive summaries of the studies are presented. Results: The initial search yielded 1600 articles. Ten articles (161 participants, 93% males, mean age = 28.3 + 6.3 years, mean MINORS score = 10.2 + 1.6) were included and analyzed. Scaphoid malunion was defined if the lateral intrascaphoid angle (LISA) was >45° (3 articles), LISA >35° (1 article), and height to length ratio >0.6 (3 articles). Four out of 5 studies found no significant associations between patient outcomes and degree of scaphoid malunion measured on imaging. Conclusions: There is a lack of consensus for defining scaphoid malunion on imaging and absence of correlation between findings on imaging and patient outcomes. Future studies defining scaphoid malunion should be appropriately powered, incorporate measures of intrarater and interrater reliabilities for all reported imaging measurements, and utilize validated patient-reported outcome measures to reflect that malunion is associated with inferior outcomes meaningful to patients.


BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044888
Author(s):  
Rita McMorrow ◽  
Barbara Hunter ◽  
Christel Hendrieckx ◽  
Dominika Kwasnicka ◽  
Leanne Cussen ◽  
...  

IntroductionType 2 diabetes is a global health priority. People with diabetes are more likely to experience mental health problems relative to people without diabetes. Diabetes guidelines recommend assessment of depression and diabetes distress during diabetes care. This systematic review will examine the effect of routinely assessing and addressing depression and diabetes distress using patient-reported outcome measures in improving outcomes among adults with type 2 diabetes.Methods and analysisMEDLINE, Embase, CINAHL Complete, PsycInfo, The Cochrane Library and Cochrane Central Register of Controlled Trials will be searched using a prespecified strategy using a prespecified Population, Intervention, Comparator, Outcomes, Setting and study design strategy. The date range of the search of all databases will be from inception to 3 August 2020. Randomised controlled trials, interrupted time-series studies, prospective and retrospective cohort studies, case–control studies and analytical cross-sectional studies published in peer-reviewed journals in the English language will be included. Two review authors will independently screen abstracts and full texts with disagreements resolved by a third reviewer, if required, using Covidence software. Two reviewers will undertake risk of bias assessment using checklists appropriate to study design. Data will be extracted using prespecified template. A narrative synthesis will be conducted, with a meta-analysis, if appropriate.Ethics and disseminationEthics approval is not required for this review of published studies. Presentation of results will follow the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidance. Findings will be disseminated via peer-reviewed publication and conference presentations.PROSPERO registration numberCRD42020200246.


BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e040751
Author(s):  
Zachary Blood ◽  
Anh Tran ◽  
Lauren Caleo ◽  
Robyn Saw ◽  
Mbathio Dieng ◽  
...  

ObjectivesTo identify patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in clinical quality registries, for people with cutaneous melanoma, to inform a new Australian Melanoma Clinical Outcomes Registry; and describe opportunities and challenges of routine PROM/PREM collection, especially in primary care.DesignSystematic review.Primary and secondary outcome measuresWhich PROMs and PREMs are used in clinical quality registries for people with cutaneous melanoma, how they are collected, frequency of collection, participant recruitment methods and funding models for each registry.Results1134 studies were identified from MEDLINE, PreMEDLINE, Embase, PsychInfo, Cochrane Database of Abstracts of Reviews of Effects databases and TUFTS Cost-Effectiveness Analysis Registry, alongside grey literature, from database inception to 5th February 2020. Following screening, 14 studies were included, identifying four relevant registries: Dutch Melanoma Registry, Adelphi Real-World Disease-Specific Programme (Melanoma), Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship Registry, and Cancer Experience Registry. These used seven PROMs: EuroQol-5 Dimensions, Functional Assessment of Cancer-General (FACT-G) and FACT-Melanoma (FACT-M), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Cancer 30 (EORTC QLQ-C30), Fatigue Assessment Scale Hospital Anxiety and Depression Scale, Patient-Reported Outcome Measures Information System-29 and one PREM; EORTC QLQ-Information Module 26. PROMs/PREMs in registries were reported to improve transparency of care; facilitate clinical auditing for quality assessment; enable cost-effectiveness analyses and create large-scale research platforms. Challenges included resource burden for data entry and potential collection bias toward younger, more affluent respondents. Feedback from patients with melanoma highlighted the relevance of PROMs/PREMs in assessing patient outcomes and patient experiences.ConclusionsClinical registries indicate PROMs/PREMs for melanoma care can be incorporated and address important gaps, however cost and collection bias may limit generalisability.PROSPERO registration numberCRD42018086737.


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