Measuring quality of life in Duchenne muscular dystrophy : a systematic review of the content and structural validity of commonly used instruments

Duchenne muscular dystrophy (DMD) is an inherited X-linked neuromuscular disorder. A number of questionnaires are available to assess quality of life in DMD, but there are concerns about their validity. This systematic review aimed to appraise critically the content and structural validity of quality of life instruments for DMD. Five databases (EMBASE, MEDLINE, CINAHL, PsycINFO, and Cochrane Library) were searched, with supplementary searches in Google Scholar. We included articles with evidence on the content and/or structural validity of quality of life instruments in DMD, and/or instrument development. Evidence was evaluated against the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria. Fifty five articles featured a questionnaire assessing quality of life in DMD. Forty instruments were extracted and 26 underwent assessment. Forty-one articles contained evidence on content or structural validity (including 37 development papers). Most instruments demonstrated low quality evidence and unsatisfactory or inconsistent validity in DMD, with the majority not featuring direct validation studies in this population. Only KIDSCREEN received an adequate rating for instrument design and a satisfactory result for content validity based on its development, yet, like the majority of PROMs, the measure has not been directly validated for use in DMD. Further research is needed on the validity of quality of life instruments in DMD, including content and structural validity studies in this population

Measurement properties of quality of life measurement instruments for infants, children and adolescents with eczema: protocol for a systematic review

Background: Eczema is a common chronic or chronically relapsing skin disease that has a substantial impact on quality of life (QoL). By means of a consensus-based process, the Harmonising Outcome Measures in Eczema (HOME) initiative has identified QoL as one of the four core outcome domains to be assessed in all eczema trials. Few measurement instruments exist to measure QoL in infants and children with eczema, but there is a great variability in both content and quality (for example, reliability and validity) of the instruments used, and it is not always clear if the best instrument is being used. Therefore, the aim of the proposed research is a comprehensive systematic assessment of the measurement properties of the existing measurement instruments that were developed and/or validated for the measurement of patient-reported QoL in infants and children with eczema. Methods/Design: This study is a systematic review of the measurement properties of patient-reported measures of QoL developed and/or validated for infants and children with eczema. Medline via PubMed and EMBASE will be searched using a selection of relevant search terms. Eligible studies will be primary empirical studies evaluating, describing, or comparing measurement properties of QoL instruments for infants and children with eczema. Eligibility assessment and data abstraction will be performed independently by two reviewers. Evidence tables will be generated for study characteristics, instrument characteristics, measurement properties, and interpretability. The adequacy of the measurement properties will be assessed using predefined criteria. Methodological quality of studies will be assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. A best evidence synthesis will be undertaken if more than one study has investigated a particular measurement property. Discussion: The proposed systematic review will produce a comprehensive assessment of measurement properties of existing QoL instruments in infants and children with eczema. We aim to identify one best currently available instrument to measure QoL in infants and/or children with eczema

A Systematic Review Evaluating Psychometric Properties of Parent or Caregiver Report Instruments on Child Maltreatment : Part 1: Content Validity

Aims: Child maltreatment (CM) is a serious public health issue, affecting over half of all children globally. Although most CM is perpetrated by parents or caregivers and their reports of CM is more accurate than professionals or children, parent or caregiver report instruments measuring CM have never been systematically evaluated for their content validity, the most important psychometric property. This systematic review aimed to evaluate the content validity of all current parent or caregiver report CM instruments. Methods: A systematic literature search was performed in CINAHL, Embase, ERIC, PsycINFO, PubMed, and Sociological Abstracts; gray literature was retrieved through reference checking. Eligible studies needed to report on content validity of instruments measuring CM perpetrated and reported by parents or caregivers. The quality of studies and content validity of the instruments were evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments guidelines. Results: Fifteen studies reported on the content validity of 15 identified instruments. The study quality was generally poor. The content validity of the instruments was overall sufficient, but most instruments did not provide high-quality evidence for content validity. Conclusions: Most instruments included in this review showed promising content validity. The International Society for the Prevention of Child Abuse and Neglect Child Abuse Screening Tool for use in Trial appears to be the most promising, followed by the Family Maltreatment-Child Abuse criteria. However, firm conclusions cannot be drawn due to the low quality of evidence for content validity. Further studies are required to evaluate the remaining psychometric properties for recommending parent or caregiver report CM instruments.Peer reviewe

Helping consumers to overcome information overload with a diversified online review subset

Abstract Redundant online reviews often have a negative impact on the efficiency of consumers’ decision-making in their online shopping. A feasible solution for business analytics is to select a review subset from the original review corpus for consumers, which is called review selection. This study aims to address the diversified review selection problem, and proposes an effective review selection approach called Simulated Annealing-Diversified Review Selection (SA-DRS) that considers the semantic relationship of review features and the content diversity of selected reviews simultaneously. SA-DRS first constructs a feature taxonomy by utilizing the Latent Dirichlet Allocation (LDA) topic model and the Word2vec model to measure the topic relation and word context relation. Based on the established feature taxonomy, the similarity between each pair of reviews is defined and the review quality is estimated as well. Finally, diversified, high-quality reviews are selected heuristically by SA-DRS in the spirit of the simulated annealing method, forming the selected review subset. Extensive experiments are conducted on real-world e-commerce platforms to demonstrate the effectiveness of SA-DRS compared to other extant review selection approaches.https://deepblue.lib.umich.edu/bitstream/2027.42/152196/1/11782_2019_Article_62.pd

A systematic review of measures of self-reported adherence to unsupervised home-based rehabilitation exercise programmes, and their psychometric properties

BACKGROUND: Adherence is an important factor contributing to the effectiveness of exercise-based rehabilitation. However, there appears to be a lack of reliable, validated measures to assess self-reported adherence to prescribed but unsupervised home-based rehabilitation exercises. OBJECTIVES: A systematic review was conducted to establish what measures were available and to evaluate their psychometric properties. DATA SOURCES: MEDLINE, EMBASE, PsycINFO CINAHL (June 2013) and the Cochrane library were searched (September 2013). Reference lists from articles meeting the inclusion criteria were checked to ensure all relevant papers were included. STUDY SELECTION: To be included articles had to be available in English; use a self-report measure of adherence in relation to a prescribed but unsupervised home-based exercise or physical rehabilitation programme; involve participants over the age of 18. All health conditions and clinical populations were included. DATA EXTRACTION: Descriptive data reported were collated on a data extraction sheet. The measures were evaluated in terms of eight psychometric quality criteria. RESULTS: 58 studies were included, reporting 61 different measures including 29 questionnaires, 29 logs, two visual analogue scales and one tally counter. Only two measures scored positively for one psychometric property (content validity). The majority of measures had no reported validity or reliability testing. CONCLUSIONS: The results expose a gap in the literature for well-developed measures that capture self-reported adherence to prescribed but unsupervised home-based rehabilitation exercises

Is the new "new" digital journalism a type of activism? An analysis of "Jot Down", "Gatopardo" and "The New Yorker"

Digitization and the economic crisis have led journalism to a new paradigm (Albalad, 2018). Contents and customs have changed, supporting media has changed, new journalistic models are hybrids and the mainstream media do not always deal with the issues that society demands (Sims, 2018). With a knowledge of tradition, but following the path of innovation, narrative journalism emerges as a possible response to this state of affairs. The objective of this analysis is to identify the challenges facing narrative journalism and narrative journalists themselves in this regard. We analyse their formats, routines and content, study how their digitally existence (Drok & Hermans, 2016) and ask ourselves if they constitute a platform for journalistic activism. Three magazines were identified for the selection of case studies: Jot Down, Gatopardo and The New Yorker. Their digital models, content and literary quality are the principal reasons for their selection, in addition to their different seniorities, geographical backgrounds and formats. By deploying a qualitative research methodology based on content analysis (Voutsina, 2018), in-depth interviews (Johnson, 2002), non-participant observation and document review, this analysis suggests that the new new digital journalism is a kind of activist journalism that upholds the traditions of reporting, narrative journalism and literary quality. This study is based on two theoretical premises: narrative journalism, exemplified by authors such as Sims (1996) and Herrscher (2012) and digital journalism, represented by writers such as Rost (2006) and Domingo & Heinonen (2008)

Measuring violence against children:A COSMIN systematic review of the psychometric and administrative properties of adult retrospective self-report instruments on child abuse and neglect

Valid, meaningful, and reliable adult retrospective measures of violence against children (VAC) are essential for establishing the prevalence, risk factors, and long-term effects of VAC. We aim to summarize the available evidence on the psychometric properties of adult retrospective VAC measures and to provide evidence-based recommendations for appropriate measure selection. We searched six electronic databases and gray literature for studies that report on the development, content validity, or psychometric properties of adult retrospective child abuse and neglect measures for this review (PROSPERO: CRD4201706). We used the 2018 Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria to evaluate each included study and measure. We assessed if measures included questions on frequency or severity, the perpetrator, or the location of the violence, and noted the administrative practicalities for each instrument such as length, readability, available translations, and cost to access. We identified 288 studies and 77 measures. The quality of evidence ranged from “low” to “high,” depending on the measure and the psychometric properties assessed. The measures with the most robust evidence available across multiple contexts are the: ACE and ACE-IQ; FBQ and FBQ-U; CTQ and CTQ-SF; and ICAST-R. This review shows the strengths and weaknesses of retrospective VAC measures. The substantial evidence presented in this review can be used by researchers to make psychometrically sound decisions for measurement selection which should be supported by extensive piloting and adaptation to the respective local context

The Working Alliance Inventory's Measurement Properties:A Systematic Review

Measurement properties of the Working Alliance Inventory (WAI) and its various translations and adaptations for specific target groups have been investigated for over 30 years. No systematic review analyzing studies on measurement properties of the WAI has been conducted to date. COnsensus-based Standards for the selection of health Measurements INstruments (COSMIN) were developed for conducting high-quality systematic reviews on measurement properties in a transparent and standardized way. Aim of this study was to systematically review studies on measurement properties of the WAI, and its adapted versions, within psychotherapy, and other healthcare contexts using COSMIN criteria. PsycINFO, Medline, and EMBASE were searched (1989-2021). In all phases of the review procedure, study selection, data extraction, risk of bias assessment, rating of the quality of measurement properties, and rating of the quality of evidence for measurement properties, disagreement between reviewers was resolved by discussion. Results on validity, internal structure, reliability, construct validity, and responsiveness were analyzed. In total 66 studies were included. In most studies, evidence for measurement properties was according to COSMIN criteria, insufficient, lacking, or conflicting. Content validity was rated insufficient because neither patients nor healthcare professionals were involved in the development and validation process. Hence evidence for content validity of the WAI is unknown. Conflicting evidence was found for structural validity. Evidence for internal consistency could not be established. Limited evidence was found for inter-rater reliability and convergent validity. Conflicting evidence was also found for test-retest reliability and divergent validity. COSMIN criteria exposed persistent problems in validation studies of the WAI. These findings may indicate that measurement properties of the WAI are not up to current standards, or that COSMIN criteria may be less appropriate for assessing measurement properties of the WAI, or it could indicate both. The results of this systematic review suggest that WAI outcomes should be interpreted with caution and further research is needed regarding the content validity and hypotheses development. For the future, the theoretical framework underlying the measurement of the working alliance needs to be studied in psychotherapy and other health contexts, and tested in methodologically sound studies

A Systematic Review Evaluating Psychometric Properties of Parent or Caregiver Report Instruments on Child Maltreatment : Part 2: Internal Consistency, Reliability, Measurement Error, Structural Validity, Hypothesis Testing, Cross-Cultural Validity, and Criterion Validity

Aims: Child maltreatment (CM) is global public health issue with devastating lifelong consequences. Global organizations have endeavored to eliminate CM; however, there is lack of consensus on what instruments are most suitable for the investigation and prevention of CM. This systematic review aimed to appraise the psychometric properties (other than content validity) of all current parent- or caregiver-reported CM instruments and recommend the most suitable for use. Method: A systematic search of the CINAHL, Embase, ERIC, PsycINFO, PubMed, and Sociological Abstracts databases was performed. The evaluation of psychometric properties was conducted according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines for systematic reviews of patient-report outcome measures. Responsiveness was beyond the scope of this systematic review, and content validity has been reported on in a companion paper (Part 1). Only instruments developed and published in English were included. Results: Twenty-five studies reported on selected psychometric properties of 15 identified instruments. The methodological quality of the studies was overall adequate. The psychometric properties of the instruments were generally indeterminate or not reported due to incomplete or missing psychometric data; high-quality evidence on the psychometric properties was limited. Conclusions: No instruments could be recommended as most suitable for use in clinic and research. Nine instruments were identified as promising based on current psychometric data but would need further psychometric evidence for them to be recommended.Peer reviewe

Breeding strategies for improving the performance and fruit quality of the pepino (Solanum muricatum): A model for the enhancement of underutilized exotic fruits

The pepino (Solanum muricatum Aiton) is a neglected Andean crop that has elicited an increasing interest from exotic fruit markets. The pepino is highly diverse and, by using appropriate breeding strategies, it has been possible to develop new improved materials. Here we review more than a decade of efforts and advancements made in the genetic improvement of the pepino for several traits, with special emphasis on fruit quality. Different strategies, like the use of a wide diversity of genetic resources, exploitation of genotype × environment interaction, use of clonal hybrids, and introgression of genes from wild species, have facilitated significant developments in enhancing the commercial potential of the pepino, and have allowed the development of new cultivars and breeding materials adapted to new agroclimatic conditions. Agronomic performance of the pepino has been improved by the use of genetic parthenocarpy, selection for resistance to Tomato Mosaic Virus, and by developing hybrids, that manifested heterosis, but also did not have lower quality fruit. Breeding for quality has been focused mostly on the improvement of flavor (sweetness and aroma) and nutritional value (ascorbic acid content; AAC). Despite the limited intraspecific diversity available for sugar content, materials with high soluble solids content (SSC) have been selected. Strategies for further increases of SSC and titratable acidity have been based in the use of wild relatives. The study of variation within the cultigen was also helpful in the selection of hybrid genotypes with improved aroma profiles and high AAC values. As a result of the breeding efforts, several cultivars with improved agronomic performance and fruit quality have been produced. The use of biotechnological tools represents an opportunity to use the extensive genomic information compiled for related species, like tomato or potato, for the future improvement and enhancement of pepino quality. The results obtained in the pepino show that ample opportunities exist for improving the commercial potential of under-utilized fruits by means of breeding based on the exploitation of genetic diversity. © 2010 Elsevier Ltd.Rodríguez Burruezo, A.; Prohens Tomás, J.; Fita, A. (2011). Breeding strategies for improving the performance and fruit quality of the pepino (Solanum muricatum): A model for the enhancement of underutilized exotic fruits. Food Research International. 44(7):1927-1935. doi:10.1016/j.foodres.2010.12.028S1927193544