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PURPOSE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: In order to encourage its wide dissemination this article is freely accessible on the web sites of the journals: Health and Quality of Life Outcomes; Journal of Clinical Epidemiology; Journal of Patient-Reported Outcomes; Quality of Life Research.
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Técnica Delphi , Revisiones Sistemáticas como Asunto , Humanos , Evaluación de Resultado en la Atención de Salud/métodos , Consenso , Lista de Verificación , Proyectos de Investigación/normas , Guías como AsuntoRESUMEN
PURPOSE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥ 67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: In order to encourage its wide dissemination this article is freely accessible on the web sites of the journals: Health and Quality of Life Outcomes; Journal of Clinical Epidemiology; Journal of Patient-Reported Outcomes; Quality of Life Research.
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Técnica Delphi , Evaluación de Resultado en la Atención de Salud , Revisiones Sistemáticas como Asunto , Humanos , Guías como Asunto , Lista de Verificación , Proyectos de Investigación/normas , ConsensoRESUMEN
BACKGROUND: Physical activity (PA) is important for people with stroke, but the reliability of PA questionnaires used in this population has been relatively unexplored. OBJECTIVE: To compare the internal consistency, test-retest, and absolute reliability of 3 commonly used PA questionnaires in adults with stroke. METHODS: Participants reported their PA levels twice, 2-3 days apart, using the Physical Activity Scale for Individuals with Physical Disabilities (PASIPD), International Physical Activity Questionnaire (IPAQ), and Global Physical Activity Questionnaire (GPAQ). Intraclass correlation coefficients (ICC2,1) were calculated for test-retest reliability, Cronbach's alpha (α) for internal consistency, and standard error of measurement (SEM) and minimal detectable change (MDC95) for absolute reliability. RESULTS: Twenty-eight people (64.4 years, 50% female, 5.2 years post-stroke) participated. Internal consistency was acceptable for total scores on the IPAQ (α = 0.79) and GPAQ (α = 0.74), but only domain-level scores for the GPAQ (α = 0.71-0.88). In the full sample, test-retest reliability was good for the PASIPD (ICC2,1 = 0.83) but poor for the IPAQ and GPAQ (ICC2,1 <0.50). After excluding participants self-reporting true changes in PA, all questionnaires had good test-retest reliability (ICC2,1 = 0.77-0.88). SEM and MDC95 were lowest for the PASIPD (188.8 and 523.3 MET-minutes/week, respectively). CONCLUSIONS: In adults with stroke, the IPAQ and GPAQ had adequate total-questionnaire internal consistency, and the GPAQ had acceptable domain-level internal consistency. When true change in PA did not occur, test-retest reliability was good for all questionnaires. We suggest clinicians and rehabilitation scientists can use any of the three questionnaires, but may consider the GPAQ due to acceptable internal consistency and test-retest reliability.
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PURPOSE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥ 67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: In order to encourage its wide dissemination this article is freely accessible on the web sites of the journals: Health and Quality of Life Outcomes; Journal of Clinical Epidemiology; Journal of Patient-Reported Outcomes; Quality of Life Research.
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Técnica Delphi , Evaluación de Resultado en la Atención de Salud , Revisiones Sistemáticas como Asunto , Humanos , Guías como Asunto , Proyectos de Investigación/normas , Lista de VerificaciónRESUMEN
BACKGROUND AND OBJECTIVE: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024. METHODS: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement. RESULTS: From the literature and expert consultation, 49 potentially relevant reporting items were identified. Round 1 of the Delphi study was completed by 103 panelists, whereas round 2 and 3 were completed by 78 panelists. After 3 rounds, agreement (≥67%) on inclusion and wording was reached for 44 items. Eleven items without consensus for inclusion and/or wording were discussed at a workgroup meeting attended by 24 participants. Agreement was reached for the inclusion and wording of 10 items, and the deletion of 1 item. Pilot testing with 65 authors of OMI systematic reviews further improved the guideline through minor changes in wording and structure, finalized during the end-of-project meeting. The final checklist to facilitate the reporting of full systematic review reports contains 54 (sub)items addressing the review's title, abstract, plain language summary, open science, introduction, methods, results, and discussion. Thirteen items pertaining to the title and abstract are also included in a separate abstract checklist, guiding authors in reporting for example conference abstracts. CONCLUSION: PRISMA-COSMIN for OMIs 2024 consists of two checklists (full reports; abstracts), their corresponding explanation and elaboration documents detailing the rationale and examples for each item, and a data flow diagram. PRISMA-COSMIN for OMIs 2024 can improve the reporting of systematic reviews of OMIs, fostering their reproducibility and allowing end-users to appraise the quality of OMIs and select the most appropriate OMI for a specific application. NOTE: This paper was jointly developed by Journal of Clinical Epidemiology, Quality of Life Research, Journal of Patient Reported Outcomes, Health and Quality of Life Outcomes and jointly published by Elsevier Inc, Springer Nature Switzerland AG, and BioMed Central Ltd., part of Springer Nature. The articles are identical except for minor stylistic and spelling differences in keeping with each journal's style. Either citation can be used when citing this article.
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OBJECTIVES: To evaluate the acceptability, reliability (inter- and intrarater), and validity (convergent, known groups, and predictive) of virtually administered gait speed tests for community-dwelling older adults. DESIGN: A prospective cohort study was performed, tracking health outcomes for a year. SETTING AND PARTICIPANTS: The 3-m gait speed test at usual and fast pace was administered to community-dwelling older adults over Zoom. METHOD: To examine acceptability, participants completed questionnaires regarding telehealth usability and experience. Virtual gait speed tests were administered at baseline and 24 to 72 hours later to evaluate reliability. Self-report mobility measures were used to examine convergent and known-groups validity. Participants' health outcomes were tracked for a year to evaluate predictive validity. RESULTS: Sixty participants completed the baseline assessment and 52 completed the second assessment. Participants reported an overall positive experience with the test. Intraclass correlation coefficients for reliability ranged from 0.79 to 0.90. For convergent validity, correlations >0.30 were found predominantly for usual gait speed with self-report mobility measures. Both the usual- and fast-gait speed were able to discriminate between difficulty walking and gait aid use. Usual gait speed was able to predict specialist and family doctor visits and fast gait speed was able to predict rehabilitation specialist visits over 1 year. CONCLUSIONS AND IMPLICATIONS: Our findings demonstrate support for the acceptability, reliability, and validity of virtually administered gait speed tests for community-dwelling older adults. Although future studies are needed to examine the validity of virtual gait speed tests in larger and more diverse samples to improve generalizability of results, clinicians and researchers can virtually administer 3-m gait speed tests with confidence that scores are trustworthy and reflect older adults' mobility.
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Velocidad al Caminar , Humanos , Masculino , Femenino , Anciano , Estudios Prospectivos , Reproducibilidad de los Resultados , Velocidad al Caminar/fisiología , Anciano de 80 o más Años , Evaluación Geriátrica/métodos , Encuestas y Cuestionarios/normas , Telemedicina , Vida IndependienteRESUMEN
OBJECTIVE: The gait speed test is one of the most widely used mobility assessments for older adults. We conducted a systematic review to evaluate and compare the measurement properties of the usual and fast gait speed tests in community-dwelling older adults. METHODS: Three databases were searched: MEDLINE, EMBASE and CINAHL. Peer-reviewed articles evaluating the gait speed test's measurement properties or interpretability in community-dwelling older adults were included. The Consensus-based Standards for the selection of health Measurement Instruments guidelines were followed for data synthesis and quality assessment. RESULTS: Ninety-five articles met our inclusion criteria, with 79 evaluating a measurement property and 16 reporting on interpretability. There was sufficient reliability for both tests, with intraclass correlation coefficients (ICC) generally ranging from 0.72 to 0.98, but overall quality of evidence was low. For convergent/discriminant validity, an overall sufficient rating with moderate quality of evidence was found for both tests. Concurrent validity of the usual gait speed test was sufficient (ICCs = 0.79-0.93 with longer distances) with moderate quality of evidence; however, there were insufficient results for the fast gait speed test (e.g. low agreement with longer distances) supported by high-quality studies. Responsiveness was only evaluated in three articles, with low quality of evidence. CONCLUSION: Findings from this review demonstrated evidence in support of the reliability and validity of the usual and fast gait speed tests in community-dwelling older adults. However, future validation studies should employ rigorous methodology and evaluate the tests' responsiveness.
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Evaluación Geriátrica , Vida Independiente , Velocidad al Caminar , Humanos , Anciano , Reproducibilidad de los Resultados , Evaluación Geriátrica/métodos , Valor Predictivo de las Pruebas , Masculino , Femenino , Anciano de 80 o más Años , Envejecimiento/fisiología , Factores de Edad , Factores de Tiempo , Análisis de la Marcha/métodos , Marcha/fisiologíaRESUMEN
The objective of this study was to translate the Preference-Based Amyotrophic Lateral Sclerosis Scale to French-Canadian. After the scale underwent forward and back translations, the expert committee examined the translated versions and found minor grammatical errors and suggested idioms to be changed to better represent French-Canadian language. Cognitive debriefing interviews were carried out to assess the pre-final version for clarity, and minor changes were made. Consensus from the expert committee and people with amyotrophic lateral sclerosis on the measure's clarity, word choice, and meaning were achieved, resulting in the final French version of the Preference-Based Amyotrophic Lateral Sclerosis Scale.
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BACKGROUND: Preserving and enhancing mobility is an important part of healthy ageing. Life-space mobility is a construct that captures actual mobility within the home and the community. The objective of this systematic review was to synthesise the measurement properties and interpretability of scores produced by life-space mobility measures in community-dwelling older adults. METHODS: This systematic review followed Consensus-based Standards for the selection of health Measurement Instruments (COSMIN). Multiple databases were searched to identify potentially relevant articles. Data extraction and assessment of methodological quality was conducted by two independent reviewers. When possible, results were quantitatively pooled for each measurement property. If studies could not be combined quantitatively, then findings were summarised qualitatively using means and percentage of confirmed hypothesis. Synthesised results were assessed against the COSMIN criteria for good measurement properties. RESULTS: A total of 21 full text articles were included in the review. The University of Alabama at Birmingham Study of Aging Life-Space Assessment (LSA) was the most evaluated life-space mobility measure. The LSA demonstrated content validity, internal consistency (Cronbach's alpha 0.80-0.92), reliability [intra-class correlation value 0.89 (95% confidence interval (CI): 0.80, 0.94)] and convergent validity with measures of physical function in community-dwelling older adults. CONCLUSION: This systematic review summarised the measurement properties of life-space mobility measures in community-dwelling older adults following COSMIN guidelines. The LSA has been translated into multiple languages and has sufficient measurement properties for assessing life-space mobility among community-dwelling older adults.
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Envejecimiento Saludable , Vida Independiente , Humanos , Anciano , Reproducibilidad de los Resultados , Consenso , Bases de Datos FactualesRESUMEN
OBJECTIVE: The self-administered version of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is used to monitor function and disease progression in individuals with amyotrophic lateral sclerosis (ALS). However, the performance of the self-administered ALSFRS-R has not been assessed using Rasch Measurement Theory. Therefore, the purpose of this study was to examine the psychometric properties of the self-administered ALSFRS-R using Rasch analysis. METHODS: Rasch analysis was performed on self-administered ALSFRS-R data from individuals with ALS across Canada. The following 6 aspects of Rasch analysis were examined using RUMM2030: fit via residuals and chi-square statistics, targeting via person-item threshold maps, dependency via item residual correlations, unidimensionality through principal components analysis of residuals, reliability via person separation index, and stability through differential item functioning analyses for sex, age, and language. RESULTS: Analysis was performed on 122 participants (mean age: 52.9 years; 62.8% men). The overall scale demonstrated good fit, reliability, and stability; however, multidimensionality was found. To address this issue, items were divided into 3 subscales (bulbar, motor, and respiratory function), and Rasch analysis was performed for each subscale. The subscales demonstrated good fit, reliability, stability, and unidimensionality. However, there were still issues with item dependency for all subscale and targeting for bulbar and respiratory subscales. CONCLUSIONS: The self-administered ALSFRS-R is reliable, internally valid, and stable across sex, age, and language subgroups; however, it is recommended that the ALSFRS-R be scored by subscale. Future studies can look at revising and/or adding items to tackle misfit, redundancy, and ceiling effects. IMPACT: Self-administered measures are simple to administer and inexpensive. The self-administered ALSFRS-R was found to be psychometrically sound and can be used as a tool to monitor disease progression and function in ALS.
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Esclerosis Amiotrófica Lateral , Masculino , Humanos , Persona de Mediana Edad , Femenino , Reproducibilidad de los Resultados , Lenguaje , Psicometría , Progresión de la EnfermedadRESUMEN
PURPOSE: Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease in adults. There are many patient-reported outcome measures (PROMs) for measuring quality of life (QoL) and health-related QoL (HRQoL) within this population; however, there is limited consensus regarding which are most valid, reliable, responsive, and interpretable. This systematic review assesses the psychometric properties and interpretability of QoL and HRQoL PROMs for individuals with ALS. METHODS: This review was conducted following the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology for systematic reviews of PROMs. MEDLINE, EMBASE, and CINAHL databases were searched. Studies were included if their aim was to evaluate one or more psychometric properties or the interpretability of QoL or HRQoL PROMs in individuals with ALS. RESULTS: We screened 2713 abstracts, reviewed 60 full-text articles, and included 37 articles. Fifteen PROMs were evaluated including generic HRQoL (e.g., SF-36), ALS-specific HRQoL (e.g., ALSAQ-40), and individualized QoL (e.g., SEIQoL) measures. Evidence for internal consistency and test-retest reliability were acceptable. For convergent validity, 84% of hypotheses were met. For known-groups validity, outcomes were able to distinguish between healthy cohorts and other conditions. Responsiveness results ranged from low to high correlations with other measures over 3-24 months. Evidence for content validity, structural validity, measurement error, and divergent validity was limited. CONCLUSION: This review identified evidence in support of the ALSAQ-40 or ALSAQ-5 for individuals with ALS. These findings can guide healthcare practitioners when selecting evidence-based QoL and HRQoL PROMs for patients and provide researchers with insight into gaps in the literature.
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Esclerosis Amiotrófica Lateral , Calidad de Vida , Adulto , Humanos , Medición de Resultados Informados por el Paciente , Psicometría/métodos , Calidad de Vida/psicología , Reproducibilidad de los ResultadosRESUMEN
Background: The COVID-19 pandemic has disrupted everyday rehabilitation research. Many academic institutions have halted in-person human research including rehabilitation sciences. Researchers are faced with several barriers to continuing their research programs. The purpose of this perspective article is to report the results of an interdisciplinary workshop aimed at understanding the challenges and corresponding strategies for conducting rehabilitation research during the COVID-19 pandemic. Methods: Twenty-five rehabilitation researchers (17 trainees and eight faculty) attended a 2-h facilitated online workshop in to discuss challenges and strategies they had experienced and employed to conduct rehabilitation research during the COVID-19 pandemic. Results: Rehabilitation researchers reported challenges with (1) pandemic protocol adjustments, (2) participant accessibility, and (3) knowledge dissemination, along with corresponding strategies to these challenges. Researchers experienced disruptions in study outcomes and intervention protocols to adhere to public health guidelines and have suggested implementing novel virtual approaches and study toolkits to facilitate offsite assessment. Participant accessibility could be improved by engaging community stakeholders in protocol revisions to ensure equity, safety, and feasibility. Researchers also experienced barriers to virtual conferences and publication, suggested opportunities for smaller networking events, and revisiting timeframes for knowledge dissemination. Conclusion: This perspective article served as a catalyst for discussion among rehabilitation researchers to identify novel and creative approaches that address the complexities of conducting rehabilitation research during the COVID-19 pandemic and beyond.
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Healthcare access and delivery for individuals with chronic obstructive pulmonary disease (COPD) who live in remote areas or who are susceptible to contracting communicable diseases, such as COVID-19, may be a challenge. Telehealth and remote monitoring devices can be used to overcome this issue. However, the accuracy of these devices must be ensured before forming healthcare decisions based on their outcomes. Therefore, a systematic review was performed to synthesize the evidence on the reliability, validity and responsiveness of digital devices used for tracking oxygen saturation (SpO2) and/or respiratory rate (RR) in individuals with COPD, in remote settings. Three electronic databases were searched: MEDLINE (1996 to October 8, 2020), EMBASE (1996 to October 8, 2020) and CINAHL (1998 to October 8, 2020). Studies were included if they aimed to evaluate one or more measurement properties of a digital device measuring SpO2 or RR in individuals with COPD. Six-hundred and twenty-five articles were identified and after screening, 7 studies matched the inclusion criteria; covering 11 devices measuring SpO2 and/or RR. Studies reported on the reliability (n = 1), convergent validity (n = 1), concurrent validity (n = 2) and predictive validity (n = 2) of SpO2 devices and on the convergent validity (n = 1), concurrent validity (n = 1) and predictive validity (n = 1) of RR devices. SpO2 and RR devices were valid when compared against other respiration monitoring devices but were not precise in predicting exacerbation events. More well-designed measurement studies are needed to make firm conclusions about the accuracy of such devices.Supplemental data for this article is available online at https://doi.org/10.1080/15412555.2021.1945021 .
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COVID-19/prevención & control , Oximetría/instrumentación , Enfermedad Pulmonar Obstructiva Crónica/metabolismo , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Frecuencia Respiratoria , Telemedicina/instrumentación , COVID-19/epidemiología , COVID-19/transmisión , Humanos , Monitoreo Fisiológico , Enfermedad Pulmonar Obstructiva Crónica/diagnóstico , Reproducibilidad de los ResultadosRESUMEN
BACKGROUND: Generic preference-based measures (GPBMs) are health-related quality of life (HRQoL) measures commonly used to evaluate the cost-utility of interventions in healthcare. However, the degree to which the content of GPBMs reflect the HRQoL of individuals with chronic obstructive pulmonary disease (COPD) has not yet been assessed. The purpose of this study was to examine the content and convergent validity of GPBMs in people with COPD. METHODS: COPD patients were recruited from healthcare centers in Ontario, Canada. The Patient-Generated Index (PGI) (an individualized HRQoL measure) and the RAND-36 (to obtain SF-6D scores; a GPBM) were administered. Life areas nominated with the PGI were coded using the International Classification of Functioning Disability and Health and mapped onto GPBMs. RESULTS: We included 60 participants with a mean age of 70 and FEV1% predicted of 43. The mean PGI score was 34.55/100 and the top three overarching areas that emerged were: 'mobility' (25.93%), 'recreation and leisure' (25.19%) and 'domestic life' (19.26%). Mapping of the nominated areas revealed that the Quality of Well-Being scale covered the highest number of areas (84.62%), Health Utilities Indices covered the least (15.38% and 30.77%) and other GPBMs covered between 46 and 62%. A correlation of 0.32 was calculated between the SF-6D and the PGI. CONCLUSIONS: The majority of GPBMs covered approximately half of the areas reported as being important to individuals with COPD. When areas relevant to COPD are not captured, HRQoL scores generated by these measures may inaccurately reflect patients' values and affect cost-effectiveness decisions.
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Prioridad del Paciente/psicología , Enfermedad Pulmonar Obstructiva Crónica/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Anciano , Análisis Costo-Beneficio , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ontario , Enfermedad Pulmonar Obstructiva Crónica/economíaRESUMEN
OBJECTIVE: The aim of this review was to synthesize the psychometric properties of generic preference-based measures (PBMs) of health-related quality of life (HRQL) in Amyotrophic Lateral Sclerosis (ALS). METHODS: A systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Four databases were searched from inception to April 2019: OVID Medline, Embase, PsycINFO, and CINAHL. Studies were included if (1) the sample represented individuals with ALS, (2) a generic PBM was utilized and reported on, and (3) information on the psychometric property of a generic PBM was provided. RESULTS: Ninety-one articles were screened, and 39 full-text articles were reviewed. Seven full-text articles were included in this review. The mean age of participants ranged from 58.1 to 63.8 years, and mean time since diagnosis ranged from 20.5 to 44.6 months. Two generic PBMs were found, the EQ-5D-3L (n = 6) and the Quality of Well-Being Self-Administered (QWB-SA) scale (n = 1). Convergent validity of the EQ-5D-3L was large against a global scale of self-perceived health (r = 0.60) and small to large against ALS specific HRQL measures (r = 0.19 to 0.75). For the QWB-SA scale, correlations were small against a generic measure (r = 0.21) and large against ALS specific measures (r = 0.55). The EQ-5D-3L discriminated across different disease severity; however, floor effects were reported. CONCLUSION: This review highlights the need for more rigorously designed studies to assess the psychometric properties of generic PBMs in ALS and the development of an ALS specific PBM that adequately reflects the health concerns of individuals with ALS.
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PURPOSE: Preference-based measures can provide measurements of health-related quality of life and be utilized for cost-effectiveness analyses of interventions in individuals with chronic obstructive pulmonary disease (COPD). The purpose of this study is to evaluate whether generic preference-based measures are reliable, valid, and responsive in COPD. METHODS: A systematic review was performed using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. Three databases were searched: MEDLINE, EMBASE, and CINAHL. Studies were included if the sample represented individuals with COPD and the aim was to evaluate one or more psychometric properties or the interpretability of generic preference-based measures. RESULTS: Six hundred and sixty-seven abstracts were screened, 65 full-text articles were reviewed and 24 articles met the inclusion criteria. Measures which emerged from the search were the EQ-5D, the SF-6D, the Quality of Well-being scale, the 15D, and the Health Utilities Index 3. Evidence for the test-retest reliability of these measures was limited. Construct validity of the measures was well supported with correlations with generic health profiles being 0.37-0.68, and correlations with COPD-specific health profiles being 0.53-0.75. Evidence for known-groups validity of these measures was poor and data on responsiveness were mixed. CONCLUSION: Generic preference-based measures' sensitivity to change and ability to discriminate between different disease severities in COPD was poorly supported. Future research may consider examining the development of COPD-specific preference-based measures that may allow for a more accurate detection of change and discrimination among disease severities to facilitate cost-effectiveness evaluations.