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Journal of Alzheimer's Disease : JAD 2022As the demand for dementia care grows rapidly worldwide, heavy "caregiver burden" has been associated with stress and depression. Even so, standard metrics for...
BACKGROUND
As the demand for dementia care grows rapidly worldwide, heavy "caregiver burden" has been associated with stress and depression. Even so, standard metrics for interdisciplinary research of caregiver burden are limited.
OBJECTIVE
The objective of the present review is to recommend valid, reliable, and comprehensive self-report instruments of caregiver burden.
METHODS
A systematic review was performed using four databases, searched in April 2021. Articles that established or evaluated self-report instruments for dementia caregiver burden were included, while studies that involved non-dementia caregivers or did not clearly define caregiver burden were excluded. Established guidelines for reliability and agreement studies were used to assess quality and risk of bias. Assessments of self-report instruments were made based on reliability, validity, feasibility, and quality of psychometric evaluations, and comparative evaluations were presented in visual form using radar graphs.
RESULTS
Search terms yielded 1,720 articles, and 40 were included in the systematic review after excluding those of low quality. Based on the results of these studies, we recommend the Zarit Burden Interview, Screen for Caregiver Burden, Caregiver Burden Interview, and Burden Scale for Family Caregivers, due to their validity, reliability, and inclusion of multiple subjective and objective dimensions of burden.
CONCLUSION
Targeting specific sources of caregiver burden can help prevent negative outcomes for both dementia patients and caregivers. Future studies should apply self-report instruments to measure and address caregiver burden longitudinally.
Topics: Caregiver Burden; Cost of Illness; Dementia; Humans; Reproducibility of Results; Self Report
PubMed: 35253744
DOI: 10.3233/JAD-215082 -
Pain Jan 2019In 2006, PAIN published a systematic review of the measurement properties of self-report pain intensity measures in children and adolescents (Stinson JN, Kavanagh T,... (Meta-Analysis)
Meta-Analysis
In 2006, PAIN published a systematic review of the measurement properties of self-report pain intensity measures in children and adolescents (Stinson JN, Kavanagh T, Yamada J, Gill N, Stevens B. Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. PAIN 2006;125:143-57). Key developments in pediatric pain necessitate an update of this work, most notably growing use of the 11-point numeric rating scale (NRS-11). Our aim was to review the measurement properties of single-item self-report pain intensity measures in children 3 to 18 years old. A secondary aim was to develop evidence-based recommendations for measurement of child and adolescent self-report of acute, postoperative, and chronic pain. Methodological quality and sufficiency of measurement properties for reliability, validity, responsiveness, and interpretability was assessed by at least 2 investigators using COnsensus based Standards for the selection of health Measurement INstruments (COSMIN). Searches identified 60 unique self-report measures, of which 8 (reported in 80 papers) met inclusion criteria. Well-established measures included the NRS-11, Color Analogue Scale (CAS), Faces Pain Scale-Revised (FPS-R; and original FPS), Pieces of Hurt, Oucher-Photographic and Numeric scales, Visual Analogue Scale, and Wong-Baker FACES Pain Rating Scale (FACES). Quality of studies ranged from poor to excellent and generally reported sufficient criterion and construct validity, and responsiveness, with variable reliability. Content and cross-cultural validity were minimally assessed. Based on available evidence, the NRS-11, FPS-R, and CAS were strongly recommended for self-report of acute pain. Only weak recommendations could be made for self-report measures for postoperative and chronic pain. No measures were recommended for children younger than 6 years, identifying a need for further measurement refinement in this age range. Clinical practice and future research implications are discussed.
Topics: Adolescent; Humans; Pain; Pain Measurement; Self Report
PubMed: 30180088
DOI: 10.1097/j.pain.0000000000001377 -
Body Image Sep 2019This systematic review synthesizes and critically appraises measurement properties of influential body image measures. Eight measures that met the definition of an...
This systematic review synthesizes and critically appraises measurement properties of influential body image measures. Eight measures that met the definition of an assessment of body image (i.e., an individual's cognitive or affective evaluation of their body or appearance with a positive or negative valence), and scored high on systematic expert priority ranking, were included. These measures were: the Body Appreciation Scale (original BAS and BAS-2), the Body Esteem Scale for Adolescents and Adults, the Body Shape Questionnaire, the Centre for Appearance Research Valence Scale, the Drive for Muscularity Scale, two subscales of the Eating Disorders Examination Questionnaire, one subscale of the Eating Disorder Inventory 3, and two subscales of the Multidimensional Body Relations Questionnaire. Articles assessing these scales' psychometric properties (N = 136) were evaluated for their methodological quality using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist, and a best evidence synthesis was performed. The results supported the majority of measures in terms of reliability and validity; however, suitability varied across populations, and some measurement properties were insufficiently evaluated. The measures are discussed in detail, including recommendations for their future use in research and clinical practice.
Topics: Body Image; Humans; Psychometrics; Reproducibility of Results; Self Report; Surveys and Questionnaires
PubMed: 31394462
DOI: 10.1016/j.bodyim.2019.06.006 -
Clinical Psychology Review Nov 2021Some autistic people employ strategies and behaviours to cope with the everyday social world, thereby 'camouflaging' their autistic differences and difficulties. This... (Review)
Review
Some autistic people employ strategies and behaviours to cope with the everyday social world, thereby 'camouflaging' their autistic differences and difficulties. This review aimed to systematically appraise and synthesise the current evidence base pertaining to autistic camouflaging. Following a systematic search of eight databases, 29 studies quantifying camouflaging in children and adults with autism diagnoses or high levels of autistic traits were reviewed. The multiple methods used to measure camouflaging broadly fell under two different approaches: internal-external discrepancy or self-report. These approaches appear to relate to two distinct but potentially connected elements of camouflaging: observable behavioural presentations and self-perceived camouflaging efforts. While significant variation was noted across individual study findings, much of the existing literature supported three preliminary findings about the nature of autistic camouflaging: (1) adults with more self-reported autistic traits report greater engagement in camouflaging; (2) sex and gender differences exist in camouflaging; and (3) higher self-reported camouflaging is associated with worse mental health outcomes. However, the research base was limited regarding participant characterisation and representativeness, which suggests that conclusions cannot be applied to the autistic community as a whole. We propose priorities for future research in refining the current understanding of camouflaging and improving measurement methods.
Topics: Adaptation, Psychological; Adult; Autistic Disorder; Child; Humans; Self Report; Sex Factors
PubMed: 34563942
DOI: 10.1016/j.cpr.2021.102080 -
Substance Use & Misuse 2022ContextBiospecimen analysis may enhance confidence in the accuracy of self-reported substance use among adolescents and transitional age youth (TAY). Associations...
ContextBiospecimen analysis may enhance confidence in the accuracy of self-reported substance use among adolescents and transitional age youth (TAY). Associations between biospecimen types and self-reported use, however, are poorly characterized in the existing literature. We performed a systematic review of associations between biospecimen-confirmed and self-reported substance use. Data sources: PubMed, Embase, and Web of Science. We included studies documenting associations between self-reported and biospecimen-confirmed substance use among adolescents (12-18 years) and TAY (19-26 years) published 1990-2020. Three authors extracted relevant data using a template and assessed bias risk using a modified JBI Critical Appraisal Tool. We screened 1523 titles and abstracts, evaluated 73 full texts for eligibility, and included 28 studies. Most studies examined urine (71.4%) and hair (32.1%) samples. Self-report retrospective recall period varied from past 24 h to lifetime use. Agreement between self-report and biospecimen results were low to moderate and were higher with rapidly metabolized substances (e.g., amphetamines) and when shorter retrospective recall periods were applied. Frequently encountered sources of potential bias included use of non-validated self-report measures and failure to account for confounding factors in the association between self-reported and biospecimen-confirmed use. Study heterogeneity prevented a quantitative meta-analysis. Studies varied in retrospective recall periods, biospecimen processing, and use of validated self-report measures. Associations between self-reported and biospecimen-confirmed substance use are low to moderate and are higher for shorter recall periods and for substances with rapid metabolism. Future studies should employ validated self-report measures and include demographically diverse samples.
Topics: Adolescent; Bias; Humans; Retrospective Studies; Self Report; Substance-Related Disorders
PubMed: 35006043
DOI: 10.1080/10826084.2021.2019783 -
Journal of Affective Disorders Jul 2021Hoarding disorder (HD) affects approximately 2.5% of the general population, leads to significant distress and impairment, and is notoriously difficult to treat. The... (Review)
Review
BACKGROUND
Hoarding disorder (HD) affects approximately 2.5% of the general population, leads to significant distress and impairment, and is notoriously difficult to treat. The crux of developing effective treatments for HD is our ability to reliably and validly measure relevant constructs in HD to better understand its presentation and, subsequently, formulate appropriate interventions.
METHODS
We identified measures specific to HD and evaluated their psychometric properties using rating criteria formulated by the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) group.
RESULTS
The 17 included measures were developed to assess adult and pediatric hoarding severity, functional impairment, and maladaptive processes (e.g., material scrupulosity). The Saving Inventory-Revised, the most widely used measure of HD severity showed the strongest psychometric properties. However, psychometric investigations were generally of poor quality across all measures and results indicated unsatisfactory performance of measures.
LIMITATIONS
The current review excluded non-English measures and ratings inherently contain some element of subjectivity despite use of predetermined criteria and two independent reviewers.
CONCLUSIONS
We suggest that clinical researchers continue to develop and modify measures used to conceptualize and, ultimately, improve treatment for HD.
Topics: Adult; Child; Consensus; Hoarding; Hoarding Disorder; Humans; Psychometrics; Self Report
PubMed: 33993080
DOI: 10.1016/j.jad.2021.04.082 -
Quality of Life Research : An... May 2020To identify and evaluate methods for assessing pediatric patient-reported outcome (PRO) data quality at the individual level.
PURPOSE
To identify and evaluate methods for assessing pediatric patient-reported outcome (PRO) data quality at the individual level.
METHODS
We conducted a systematic literature review to identify methods for detecting invalid responses to PRO measures. Eight data quality indicators were applied to child-report data collected from 1780 children ages 8-11 years. We grouped children with similar data quality patterns and tested for between-group differences in factors hypothesized to influence self-report capacity.
RESULTS
We identified 126 articles that described 494 instances in which special measures or statistical techniques were applied to evaluate data quality at the individual level. We identified 22 data quality indicator subtypes: 9 direct methods (require administration of special items) and 13 archival techniques (statistical procedures applied to PRO data post hoc). Application of archival techniques to child-report PRO data revealed 3 distinct patterns (or classes) of the data quality indicators. Compared to class 1 (56%), classes 2 (36%) and 3 (8%) had greater variation in their PRO item responses. Three archival indicators were especially useful for differentiating plausible item response variation (class 2) from statistically unlikely response patterns (class 3). Neurodevelopmental conditions, which are associated with a range of cognitive processing challenges, were more common among children in class 3.
CONCLUSION
A multi-indicator approach is needed to identify invalid PRO responses. Once identified, assessment environments and measurement tools should be adapted to best support these individuals' self-report capacity. Individual-level data quality indicators can be used to gauge the effectiveness of these accommodations.
Topics: Child; Data Accuracy; Humans; Patient Reported Outcome Measures; Quality of Life; Self Report
PubMed: 31900764
DOI: 10.1007/s11136-019-02387-3 -
Quality of Life Research : An... Feb 2018Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child... (Review)
Review
OBJECTIVE
Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment.
METHODS
A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility.
RESULTS
There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies.
CONCLUSIONS
This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
Topics: Adolescent; Adult; Biomedical Research; Child; Cross-Sectional Studies; Humans; Medical Oncology; Psychometrics; Quality of Life; Reproducibility of Results; Self Report; Young Adult
PubMed: 28879501
DOI: 10.1007/s11136-017-1692-4 -
Journal of the American Heart... Aug 2018Background There is growing evidence that sleep duration and quality may be associated with cardiovascular harm and mortality. Methods and Results We conducted a... (Meta-Analysis)
Meta-Analysis
Background There is growing evidence that sleep duration and quality may be associated with cardiovascular harm and mortality. Methods and Results We conducted a systematic review, meta-analysis, and spline analysis of prospective cohort studies that evaluate the association between sleep duration and quality and cardiovascular outcomes. We searched MEDLINE and EMBASE for these studies and extracted data from identified studies. We utilized linear and nonlinear dose-response meta-analysis models and used DerSimonian-Laird random-effects meta-analysis models of risk ratios, with inverse variance weighting, and the I statistic to quantify heterogeneity. Seventy-four studies including 3 340 684 participants with 242 240 deaths among 2 564 029 participants who reported death events were reviewed. Findings were broadly similar across both linear and nonlinear dose-response models in 30 studies with >1 000 000 participants, and we report results from the linear model. Self-reported duration of sleep >8 hours was associated with a moderate increased risk of all-cause mortality, with risk ratio , 1.14 (1.05-1.25) for 9 hours, risk ratio, 1.30 (1.19-1.42) for 10 hours, and risk ratio, 1.47 (1.33-1.64) for 11 hours. No significant difference was identified for periods of self-reported sleep <7 hours, whereas similar patterns were observed for stroke and cardiovascular disease mortality. Subjective poor sleep quality was associated with coronary heart disease (risk ratio , 1.44; 95% confidence interval, 1.09-1.90), but no difference in mortality and other outcomes. Conclusions Divergence from the recommended 7 to 8 hours of sleep is associated with a higher risk of mortality and cardiovascular events. Longer duration of sleep may be more associated with adverse outcomes compared with shorter sleep durations.
Topics: Cardiovascular Diseases; Coronary Disease; Humans; Mortality; Self Report; Sleep; Time Factors
PubMed: 30371228
DOI: 10.1161/JAHA.118.008552 -
Value in Health : the Journal of the... Oct 2022This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of... (Review)
Review
OBJECTIVES
This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities.
METHODS
A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self- and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized.
RESULTS
A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self- and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self- and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self- and proxy completion.
CONCLUSIONS
EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self- and proxy reports in assessing HRQoL in child populations.
Topics: Adolescent; Child; Child, Preschool; Humans; Infant; Infant, Newborn; Parents; Proxy; Psychometrics; Quality of Life; Self Report; Surveys and Questionnaires
PubMed: 35667950
DOI: 10.1016/j.jval.2022.04.1723