BACKGROUND: Long COVID (LC) is a novel multisystem clinical syndrome affecting millions of individuals worldwide. The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) is a condition-specific patient-reported outcome measure designed for assessment and monitoring of people with LC. OBJECTIVES: To evaluate the psychometric properties of the C19-YRSm in a prospective sample of people with LC. METHODS: 1314 patients attending 10 UK specialist LC clinics completed C19-YRSm and EuroQol 5D-5L (EQ-5D-5L) longitudinally. Scale characteristics were derived for C19-YRSm subscales (Symptom Severity (SS), Functional Disability (FD) and Overall Health (OH)) and internal consistency (Cronbach's alpha). Convergent validity was assessed using the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue Scale. Known groups validity was assessed for the Other Symptoms subscale as tertiles, as well as by hospitalisation and intensive care admission. Responsiveness and test-retest reliability was evaluated for C19-YRSm subscales and EQ-5D-5L. The minimal important difference (MID) and minimal clinically important difference (MCID) were estimated. Confirmatory factor analysis was applied to determine the instrument's two-factor structure. RESULTS: C19-YRSm demonstrated good scale characteristic properties. Item-total correlations were between 0.37 and 0.65 (for SS and FD), with good internal reliability (Cronbach's alphas>0.8). Item correlations between subscales ranged between 0.46 and 0.72. Convergent validity with FACIT was good (-0.46 to -0.62). The three subscales discriminated between different levels of symptom burden (p<0.001) and between patients admitted to hospital and intensive care. There was moderate responsiveness for the three subscales ranging from 0.22 (OH) to 0.50 (SS) which was greater than for the EQ-5D-5L. Test-retest reliability was good for both SS 0.86 and FD 0.78. MID was 2 for SS, 2 for FD and 1 for OH; MCID was 4 for both the SS and FD. The factor analysis supported the two-factor SS and FD structure. CONCLUSIONS: The C19-YRSm is a condition-specific, reliable, valid and responsive patient-reported outcome measure for LC.
COVID-19 , Patient Reported Outcome Measures , Psychometrics , SARS-CoV-2 , Humans , COVID-19/psychology , Male , Female , Middle Aged , Prospective Studies , Reproducibility of Results , Aged , Post-Acute COVID-19 Syndrome , Severity of Illness Index , Adult , Quality of Life , United Kingdom
Purpose: The purpose of this study was to determine the psychometric validity of the Visual Function Index (VF-14) for use by patients with Leber hereditary optic neuropathy (LHON). Methods: Rasch analysis was conducted in two stages using data for 196 individuals (74.5% male) carrying one of the three primary LHON mutations and affected by vision loss. In stage 1, scale unidimensionality, scale-to-sample targeting, response category threshold ordering, item fit statistics, local dependency, and reliability were assessed. In stage 2, iterative post-hoc revisions of the VF-14 structure (VF-14R) were applied and psychometrically re-evaluated. Results: Issues identified with the VF-14 included disordered response thresholds (12/14 items), local dependency (10/91 pairwise dependencies), and evidence of multidimensionality. However, the distribution of person estimates and item thresholds were fairly well matched, only one item showed misfit to the Rasch model, and there was good reliability (Person Separation Index 0.84). Rasch-informed VF-14 revisions included removing both driving items and the misfitting sports item, rescoring response options across all items by merging two response categories, and accounting for the dependency between two reading items. The VF-14R demonstrated improved psychometric validity. Conclusions: Clinicians and researchers using the VF-14 with LHON patients should be aware of its limitations. Compared to the original version, the proposed Rasch-based structure of the VF-14R appears to offer improved psychometric performance and interpretation of vision-related activity limitation. Translational Relevance: The original version of the VF-14 exhibits several limitations that undermines its psychometric validity as a patient-reported outcome measure for patients with LHON.
Optic Atrophy, Hereditary, Leber , Humans , Male , Female , Psychometrics , Optic Atrophy, Hereditary, Leber/diagnosis , Optic Atrophy, Hereditary, Leber/genetics , Reproducibility of Results , Vision, Ocular , Blindness
PURPOSE: The purpose of this study was to provide a patient-reported outcome measure for people with multiple sclerosis (MS) comprehensively reflecting the construct of fatigue and developed upon the assumptions of the Rasch model. The Neurological Fatigue Index - Multiple Sclerosis (NFI-MS) is based on both a medical and patient-described symptom framework of fatigue and has been validated. Therefore, in this study the German version of the NFI-MS (NFI-MS-G) consisting of a physical and cognitive subscale and a summary scale was validated. METHOD: In this bi-centre-study, 309 people with MS undergoing outpatient rehabilitation or being≥2 months before or after their inpatient rehabilitation completed the German NFI-MS-G twice within 14-21 days together with other questionnaires. Correlation with established questionnaires and Rasch analysis were used for its validation. Additionally, psychometric properties of known-groups validity, internal consistency, test-retest reliability, measurement precision and readability were tested. Finally, the English NFI-MS and German NFI-MS-G were compared with each other to equate the language versions. RESULTS: The NFI-MS-G showed good internal construct validity, convergent and known-groups validity and internal consistency (Cronbach's alpha 0.84-0.93). The physical subscale showed minor local dependencies between items 1 and 7, 2 and 3 and 4 to 6, that could be treated by combining the respective items to testlets. Unidimensionality was found for the physical and cognitive subscales but not for the summary scale. Replacing the summary scale, a 2-domains subtest measuring the higher-order construct of fatigue was created. Good test-retest reliability (Lin's concordance correlation coefficient of 0.86-0.90) and low floor and ceiling effects were demonstrated. The NFI-MS-G was found easily readable and invariant across groups of gender, age, disease duration, timepoint and centre. CONCLUSION: The German version of the NFI-MS comprehensively represents the construct of fatigue and has adequate psychometric properties. The German version differs from the English original version with respect to a lack of unidimensionality of the summary scale and minor local dependencies of the physical subscale that could be canceled out using a testlet analysis.
Multiple Sclerosis , Humans , Psychometrics/methods , Reproducibility of Results , Germany , Language , Fatigue/diagnosis , Surveys and Questionnaires
Many physical activity (PA) interventions implemented to tackle the child obesity epidemic have shown limited effectiveness, possibly due to a lack of consideration of potential stress that accompanies behavior adaptation and the automatic perseverative cognition that exacerbates the stress (namely rumination). Purpose: The main aim of this paper is to develop and validate the PA-specific Rumination Scale for Children (PARSC) that assesses children's tendencies to engage in repeated negative thoughts about PA (Study 2). Items in the scale were derived from qualitative information about factors that inherently demotivates PA participation (intrinsic barriers) through the lived experience of UK children (Study 1). Methods: For Study 1, pedometry PA data were collected from 143 children (aged 6-10 years). Twenty-one focus groups were formed based on participants' year group, sex and PA level. For PARSC validation (Study 2), 382 children completed the questionnaire twice. Self-report PA, device-based PA, and avoidant coping were also assessed. Results: Study 1-Four overarching themes identified as intrinsic barriers were lack of competence, fear of negative experiences, external constraints and lacking a sense of purpose. Altogether, 10 higher order and lower order themes were used to construct PARSC items. Study 2-From Rasch analysis, PARSC possessed sound internal validity, internal consistency, and test-retest reliability. Self-report PA and avoidant coping were predictive of PA-specific rumination, but not device-based PA. Conclusion: PARSC is a useful tool to identify children ruminative about PA for whom interventions can be designed, with the intrinsic barriers considered, to promote PA behavior adaptation.
Exercise , Motor Activity , Humans , Child , Reproducibility of Results , Cognition , Surveys and Questionnaires , United Kingdom
OBJECTIVES: To determine the psychometric validity, using Rasch analysis, of summing the three constituent parts of the Glasgow Coma Scale (GCS). DESIGN: National (registry-based) retrospective study. SETTING: England and Wales. PATIENTS: All individuals who sustained a traumatic injury and were: admitted for more than three days; required critical care resources; transferred for specialist management; or who died from their injuries. MAIN OUTCOMES AND MEASURES: Demographic information (i.e., age at time of injury, and sex), item sub-scores of the first available GCS (either completed by the attending paramedics or on arrival to hospital), injury severity as denoted by the Injury Severity Scale (ISS), and outcome (survival to hospital discharge or 30-days post-injury, whichever is earliest). RESULTS: 321,203 cases between 2008 and 2017. 55.9% were male, the median age was 62.7 years (IQR 44.2-80.8), the median ISS was 9 (IQR 9 to 17), and 6.6% were deceased at 30 days. The reliability statistics suggest that when the extreme scores (i.e. 3 and 15) are accounted for, that there is only sufficient consistency to support the separation of injuries into 3 broad categories, e.g. mild, moderate and severe. As extreme scores don't impact Rasch item calibrations, subsequent analysis was restricted to the 48,417 non-extreme unique cases. Overall fit to the Rasch model was poor across all analyses (p < 0.0001). Through a combination of empirical evidence and clinical reasoning, item response categories were collapsed to provide a post-hoc scoring amendment. Whilst the modifications improved the function of the individual items, there is little evidence to support them meaningfully contributing to a total score that can be interpreted on an interval scale. CONCLUSION AND RELEVANCE: The GCS does not perform in a psychometrically robust manner in a national retrospective cohort of individuals who have experienced a traumatic injury, even after post-hoc correction.
Glasgow Coma Scale , Cohort Studies , Female , Humans , Male , Middle Aged , Psychometrics , Reproducibility of Results , Retrospective Studies
BACKGROUND: The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in Post-COVID-19 syndrome (PCS). The 22-item scale's subscales (scores) are symptom severity (0-100), functional disability (0-50), additional symptoms (0-60), and overall health (0-10). OBJECTIVES: This study aimed to test the scale's psychometric properties using Rasch analysis and modify the scale based on analysis findings, emerging information on essential PCS symptoms, and feedback from a working group of patients and professionals. METHODS: Data from 370 PCS patients were assessed using a Rasch Measurement Theory framework to test model fit, local dependency, response category functioning, differential item functioning, targeting, reliability, and unidimensionality. The working group undertook iterative changes to the scale based on the psychometric results and including essential symptoms. RESULTS: Symptom severity and functional disability subscales showed good targeting and reliability. Post hoc rescoring suggested that a 4-point response category structure would be more appropriate than an 11-point response for both subscales. Symptoms with binary responses were placed in the other symptoms subscale. The overall health single-item subscale remained unchanged. CONCLUSION: A 17-item C19-YRSm was developed with subscales (scores): symptom severity (0-30), functional disability (0-15), other symptoms (0-25), and overall health (0-10).
COVID-19 , COVID-19/complications , COVID-19/diagnosis , Humans , Patient Reported Outcome Measures , Reproducibility of Results , Surveys and Questionnaires , Post-Acute COVID-19 Syndrome
INTRODUCTION: Long COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services. We seek to optimise long COVID care both within and outside specialist clinics, including improving access, reducing inequalities, helping self-management and providing guidance and decision support for primary care. We aim to establish a 'gold standard' of care by systematically analysing current practices, iteratively improving pathways and systems of care. METHODS AND ANALYSIS: This mixed-methods, multisite study is informed by the principles of applied health services research, quality improvement, co-design, outcome measurement and learning health systems. It was developed in close partnership with patients (whose stated priorities are prompt clinical assessment; evidence-based advice and treatment and help with returning to work and other roles) and with front-line clinicians. Workstreams and tasks to optimise assessment, treatment and monitoring are based in three contrasting settings: workstream 1 (qualitative research, up to 100 participants), specialist management in 10 long COVID clinics across the UK, via a quality improvement collaborative, experience-based co-design and targeted efforts to reduce inequalities of access, return to work and peer support; workstream 2 (quantitative research, up to 5000 participants), patient self-management at home, technology-supported monitoring and validation of condition-specific outcome measures and workstream 3 (quantitative research, up to 5000 participants), generalist management in primary care, harnessing electronic record data to study population phenotypes and develop evidence-based decision support, referral pathways and analysis of costs. Study governance includes an active patient advisory group. ETHICS AND DISSEMINATION: LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber-Bradford Leeds Research Ethics Committee (ref: 21/YH/0276). Participants will provide informed consent. Dissemination plans include academic and lay publications, and partnerships with national and regional policymakers. TRIAL REGISTRATION NUMBER: NCT05057260, ISRCTN15022307.
COVID-19 , COVID-19/complications , COVID-19/therapy , Humans , Locomotion , State Medicine , United Kingdom , Post-Acute COVID-19 Syndrome
BACKGROUND: The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1-5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. METHODS AND FINDINGS: MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%-79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%-76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5-45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3-35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5-66.6], p = 0.002; PCS 66.3 [95% CI 66.2-66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9-50.1], p = 0.002; PCS 48.0 [95% CI 47.9-48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. CONCLUSIONS: The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. PROTOCOL REGISTRATION: PROSPERO CRD42020164737.
Quality of Life , Renal Insufficiency, Chronic , Adult , Cross-Sectional Studies , Fatigue , Humans , Renal Dialysis , Renal Insufficiency, Chronic/complications , Renal Insufficiency, Chronic/therapy
BACKGROUND: The current standard of care in rheumatoid arthritis (RA) requires regular assessment of disease activity (DA). All standard RA DA measurement instruments require joint counts to be undertaken by a healthcare professional with/without a blood test. Few healthcare providers have the capacity to assess patients as frequently as stipulated by guidelines. Patient Reported Outcome Measures (PROMs) could be an efficient and informative way to assess RA DA, which is highlighted by the SARS-COV-2 pandemic, as most consultations are remote rather than face-to-face. We aimed to assess all PROMs for RA DA against the internationally recognised COSMIN guidelines to provide evidence-based recommendations to select the most suitable PROMs. METHODS: Review registered on PROSPERO as CRD42020176176. The search strategy was based on a previous similar systematic review and expanded to include all articles up to January 2019. All identified articles were rated by two independent assessors following the COSMIN guidelines. RESULTS: 668 abstracts were identified, with 10 articles included. A further 21 were identified from a previous review. Ten PROMs were identified. There was insufficient evidence to place any of the identified PROMs into recommendation for use category A due to lack of evidence for content validity, as stipulated by the COSMIN guidelines. CONCLUSION: Lack of evidence of content validity limits suitable PROM selection, therefore none can be recommended for use. It is acknowledged that all included PROMs were developed before the COSMIN guidelines were published. Future research on PROMs for RA DA must provide evidence of content validity.
Arthritis, Rheumatoid , COVID-19 , Arthritis, Rheumatoid/diagnosis , Arthritis, Rheumatoid/therapy , Humans , Patient Reported Outcome Measures , Quality of Life , SARS-CoV-2 , Surveys and Questionnaires
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.
Depressive Disorder, Major , Optic Nerve Diseases , Humans , Patient Reported Outcome Measures , Qualitative Research , Quality of Life
As our understanding of the nature and prevalence of post-coronavirus disease 2019 (COVID-19) syndrome (PCS) is increasing, a measure of the impact of COVID-19 could provide valuable insights into patients' perceptions in clinical trials and epidemiological studies as well as routine clinical practice. To evaluate the clinical usefulness and psychometric properties of the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) in patients with PCS, a prospective, observational study of 187 consecutive patients attending a post-COVID-19 rehabilitation clinic was conducted. The C19-YRS was used to record patients' symptoms, functioning, and disability. A global health question was used to measure the overall impact of PCS on health. Classical psychometric methods (data quality, scaling assumptions, targeting, reliability, and validity) were used to assess the C19-YRS. For the total group, missing data were low, scaling and targeting assumptions were satisfied, and internal consistency was high (Cronbach's α = 0.891). Relationships between the overall perception of health and patients' reports of symptoms, functioning, and disability demonstrated good concordance. This is the first study to examine the psychometric properties of an outcome measure in patients with PCS. In this sample of patients, the C19-YRS was clinically useful and satisfied standard psychometric criteria, providing preliminary evidence of its suitability as a measure of PCS.
COVID-19 , COVID-19/complications , Humans , Prospective Studies , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires , Post-Acute COVID-19 Syndrome
BACKGROUND: The Boston Carpal Tunnel Questionnaire (BCTQ) is a patient-reported outcome measure (PROM) used to measure symptom severity and function in carpal tunnel syndrome (CTS). Despite its wide use, investigation of its measurement properties using modern psychometric methodologies is limited. METHODS: Completed BCTQ data collected routinely in the Canterbury carpal tunnel clinic was used to investigate the structural validity and measurement properties of the BCTQ through application of a Rasch model analytic approach. RESULTS: A total of 600 patients with electrodiagnostically confirmed CTS in their right hand were randomly selected from the database and analyzed. Mean age was 48.8 y, and 73% were women. Initial analysis showed that the 19 items could not be reliably added up to form a single linear construct. All subsequent analyses were done by subscale only. The Symptom Severity Subscale (SSS) displayed a large amount of local dependence. This could be accommodated through the creation of four clinically derived testlets, allowing for the ordinal SSS raw score to be transformed to a linear measure. The Functional Status Subscale (FSS) displayed a number of issues regarding its psychometric integrity. These include scale and item fit, targeting, differential item functioning, and dimensionality. CONCLUSIONS: This study shows that a single total score generated across all BCTQ items is not psychometrically valid, and that the SSS and FSS subscales should be treated separately. We propose a modified scoring system for the SSS, resulting in a linear measure that can be used in the analysis of future and existing datasets.
Carpal Tunnel Syndrome/physiopathology , Hand/physiopathology , Patient Reported Outcome Measures , Psychometrics , Surveys and Questionnaires , Aged , Carpal Tunnel Syndrome/diagnosis , Disability Evaluation , Female , Humans , Male , Middle Aged , Psychometrics/methods , Reproducibility of Results , Wrist/physiopathology
BACKGROUND AND OBJECTIVES: A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). METHODS: Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. RESULTS: Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). DISCUSSION AND IMPLICATIONS: SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
Dementia , Quality of Life , Caregivers , Humans , Psychometrics , Reproducibility of Results , Systematic Reviews as Topic
OBJECTIVES: Dementia affects many people, with numbers expected to grow as populations age. Many people with dementia receive informal/family/unpaid care, for example, from a spouse or child, which may affect carer quality of life. Measuring the effectiveness of health/social care interventions for carers requires a value measure of the quality-of-life impact of caring. This motivated development of the Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) instrument. This study aimed to obtain general population values for SIDECAR-D to aid incorporating the impact of caring in economic evaluation. METHODS: Members of the UK general public completed a best-worst scaling object case survey, which included the 18 SIDECAR-D items and EQ-5D-3L descriptions. Responses were analyzed using scale-adjusted finite mixture models. Relative importance scores (RISs) for the 18 SIDECAR-D items formed the SIDECAR-D relative scale measuring the relative impact of caring. The SIDECAR-D tariff, on the full health = 1, dead = 0 scale, was derived by rescaling EQ-5D-3L and SIDECAR-D RISs so the EQ-5D-3L RISs equaled anchored valuations of the EQ-5D-3L pits state from a visual analog scale task. RESULTS: Five hundred ten respondents completed the survey. The model had 2 parameter and 3 scale classes. Additive utility decrements of SIDECAR-D items ranged from -0.05 to -0.162. Utility scores range from 0.95 for someone affirming 1 item to -0.297 for someone affirming all 18. CONCLUSION: SIDECAR-D is a needs-based scale of the impact on quality of life of caring for someone with dementia, with a valuation tariff to support its use in economic evaluation.
Caregivers/psychology , Dementia/epidemiology , Surveys and Questionnaires/standards , Adult , Aged , Cost-Benefit Analysis , Female , Health Status , Humans , Male , Middle Aged , Quality of Life , Reproducibility of Results , Socioeconomic Factors , United Kingdom
BACKGROUND: With increasing levels of suicide and self-harm behaviour in the criminal justice system professionals would benefit from a tool that can identify individuals who may be at risk of self-harm and/or suicidal behaviour. METHOD: The Suicide Concerns for Offenders in the Prison Environment (SCOPE) tool was originally devised and validated in six UK prisons between 2003 and 2004. The goal of this study is to re-evaluate the SCOPE using Rasch methodology to produce a psychometrically robust instrument. Data were presented from 1051 SCOPE assessments of male and female offenders. RESULTS: The analysis produced a revised SCOPE-2 tool reducing the tool from a 27 to a 19 items and simplifying the categorical six point scale to a four item scale. CONCLUSIONS: Further validation of the new SCOPE-2 tool is required in samples of male and female prisoners to assess different cut-off points for clinical and policy use.
Criminals , Prisoners , Self-Injurious Behavior , Suicide , Female , Humans , Male , Prisons , Self-Injurious Behavior/diagnosis , Self-Injurious Behavior/epidemiology
BACKGROUND: Although health-related quality of life is key for patients with long-term neurodegenerative conditions, measuring this is less straightforward and complex in Huntington's disease (HD). OBJECTIVES: To refine and validate a fully patient-derived instrument, the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), and to elucidate health domains that are meaningful to patients' lived experience. METHODS: Five-hundred forty-one participants, from premanifest to end-stage disease, completed the HDQoL, together with generic quality-of-life measures and in-person motor, cognitive, and behavioral assessments. The psychometric properties of the HDQoL were examined using factor analysis and Rasch analysis. RESULTS: Four HDQoL domains emerged, reflecting the classical triad of HD features; they were Physical-Functional, Cognitive, and 2 different behavioral aspects, that is, the Mood-Self domain and a distinct Worries domain. These domains clarify the behavioral sequelae as experienced by patients, and all showed good to excellent internal consistency. Known-groups analyses illustrated significant and graded changes in clinical assessments and corresponding HDQoL domains across disease severity levels. Convergent and discriminant validity was demonstrated by the expected pattern of correlations between specific HDQoL domains and corresponding domain-relevant clinical assessments as well as patient-reported measures. The data demonstrate robust support for the refined HDQoL across disease stages. CONCLUSIONS: The HDQoL, with its 2 distinct behavioral domains of Mood-Self and Worries as well as the Physical-Functional and Cognitive domains, is a relevant, reliable, and valid patient-derived instrument to measure the impact of HD across all severity stages.
Huntington Disease/complications , Psychometrics/standards , Quality of Life/psychology , Adult , Aged , Female , Humans , Huntington Disease/psychology , Male , Middle Aged , Psychometrics/instrumentation , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires/standards
BACKGROUND: Huntington's disease can present at almost any age but traditionally, those with an onset ≤20 years are described as having juvenile onset Huntington's disease (JOHD). They are more likely to have bradykinesia and dystonia earlier in the course of the disease. The Total Motor Score of the Unified Huntington's Disease Rating Scale (UHDRS-TMS) is often used as the principal outcome measure in clinical trials. OBJECTIVE: To identify a motor scale more suitable for JOHD patients. METHODS: A working group reviewed the UHDRS-TMS and modified it by adding four further assessment items. Rasch analysis was used to study the performance of the modified scale in 95 patients with a mean age of 19.4 (SD 6.6) years. RESULTS: The initial analysis showed a significant overall misfit to the Rasch model and a number of individual items displayed poor measurement properties: all items relating to chorea displayed significant misfit due to under-discrimination. Additionally, a number of items displayed disordered response category thresholds, and a large amount of dependency was present within the item set (96 out of 741 pairwise differencesâ=â13%). An iterative process of scale re-structuring and evaluation was then undertaken, with a view to eliminating the largest sources of misfit and generating a set of items that would conform to Rasch model expectations. CONCLUSION: This post-hoc scale restructuring appears to provide a valid motor score that is psychometrically robust in a JOHD population. This scale restructuring offers a pragmatic solution to measuring motor function in a JOHD population, and it could provide the basis for the further iterative development of a more useful clinical rating scale for patients with JOHD.
Huntington Disease , Severity of Illness Index , Adolescent , Adult , Child , Female , Humans , Male , Psychometrics , Young Adult
BACKGROUND AND OBJECTIVES: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. METHODS: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review. RESULTS: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents. CONCLUSIONS: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
Caregivers/psychology , Family/psychology , Needs Assessment , Quality of Life , Adult , Aged , Aged, 80 and over , Dementia/psychology , Female , Humans , Interviews as Topic , Male , Middle Aged , Psychometrics , Qualitative Research , United Kingdom
BACKGROUND: Prisoners are at increased risk of self-harm and when either intent is expressed, or an act of self-harm carried out, prisoners in the UK are subject to self-harm/suicide monitoring (referred to as "open ACCT" monitoring). However, there is a paucity of validated instruments to identify risk of self-harm in prisoner populations. In response to the need to support prison staff to determine who is at increased risk of self-harm or repeat self-harm, the aim of this study was to determine whether any pre-existing, standardised instruments could usefully identify future self-harm events in prisoners undergoing ACCT monitoring. METHODS: A multi-stage prospective cohort study was conducted, where the Prison Screening Questionnaire (PriSnQuest), a modified Borderline Symptom List-23 (BSL-23), Self-Harm Inventory (SHI), Patient Health Questionnaire-9 (PHQ-9) and Clinical Outcomes in Routine Evaluation - Outcome Measure (CORE-OM) instruments were administered to prisoners aged 18 and above, who were judged to be at an increased risk of self-harm (on open ACCT monitoring) during the recruitment phase. A 6-month follow-up determined self-harm occurrence since baseline, and Area-Under-the-Curve (AUC) analysis examined the ability of the instruments to predict future self-harm. RESULTS: Prison records established that 29.1% self-harmed during the follow up period, involving a total of 423 self-harm events reported from 126 individuals, followed up for 66,789 prisoner days (median 167 days; IQR 71-207.5 days). This translated to an 'event incidence' of 6.33 per 1000 prisoner days of those who had been placed upon an ACCT, or 'prisoner incidence' of 1.89 per 1000 days, with considerable variation for both gender and participating prisons. None of the summary scores derived from the selected instruments showed a meaningful ability to predict self-harm, however, exploratory logistic regression analysis of individual background and instrument items revealed gender-specific item sets which were statistically significant in predicting future self-harm. CONCLUSIONS: Prospective self-harm was not predicted by any of the pre-existing instruments that were under consideration. Exploratory logistic regression analysis did reveal gender-specific item sets, producing predictive algorithms which were statistically significant in predicting future self-harm; however, the operational functionality of these item sets may be limited.
