ObjectivesThe aims were to validate a British English version of the Workplace Activity Limitatio... more ObjectivesThe aims were to validate a British English version of the Workplace Activity Limitations Scale (WALS) linguistically, then test this psychometrically in RA, axial spondyloarthritis (axSpA), OA and FM.MethodsThe WALS was forward translated, reviewed by an expert panel, and cognitive debriefing interviews were conducted. Participants completed a postal questionnaire booklet. Construct (structural) validity was examined by fit to the Rasch measurement model. Concurrent validity included testing between the WALS and the Work Limitations Questionnaire-25 (WLQ-25). Two weeks later, participants were mailed a second questionnaire booklet for test–retest reliability.ResultsMinor wording changes were made to the WALS, then 831 employed participants completed questionnaires: 267 men and 564 women; 53.5 (s.d. 8.9) years of age; with condition duration 7.7 (s.d. 8.0) years. The WALS satisfied Rasch model requirements, and a WALS Rasch transformation table was created. Concurrent vali...
Introduction The Evaluation of Daily Activity Questionnaire is a detailed self-report measure of ... more Introduction The Evaluation of Daily Activity Questionnaire is a detailed self-report measure of activity limitations. It has two parts, 10 scales of symptom severity and 14 daily activity domains, including 138 activities. It has good psychometric properties in rheumatoid arthritis. The aim was next to establish its content validity and acceptability in seven musculoskeletal conditions: ankylosing spondylitis; osteoarthritis; systemic lupus erythematosus; systemic sclerosis; chronic pain; chronic hand/upper limb musculoskeletal disorders; and primary Sjögren's syndrome. Method Participants completed the Evaluation of Daily Activity Questionnaire in their own time, followed by a cognitive debriefing interview to identify their views of importance of including each item and Evaluation of Daily Activity Questionnaire acceptability. Results Six to 12 people with each condition were interviewed ( n = 70): 17 men and 53 women, 57.38 (SD 12.83) years of age and with 13.15 (SD 11.02) y...
Turkish Journal of Physical Medicine and Rehabilitation
Objectives: This study was planned to test the reliability and validity of the Turkish version of... more Objectives: This study was planned to test the reliability and validity of the Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 cerebral palsy (CP) module (parent form) in children with CP. Patients and methods: In the validation study conducted between June 2007 and June 2009, 511 children (299 normal children, 212 children with CP) were assessed by the seven scales of PedsQL [daily activities (DA), school activities (SA), movement and balance (MB), pain and hurt (PH), fatigue (F), eating activities (EA), and speech and communication (SC)]. Reliability was tested by internal consistency and person separation index (PSI); internal construct validity by Rasch analysis and external construct validity by correlation with the Gross Motor Function Classification System (GMFCS) and Functional Independence Measure for Children (WeeFIM). Results: Only 13 children with CP completed the inventory by themselves and thus were excluded. Consequently, 199 children with CP (...
International Journal for Quality in Health Care, 2020
ObjectiveTo demonstrate the influence and added value of a Standardized Assessment and Reporting ... more ObjectiveTo demonstrate the influence and added value of a Standardized Assessment and Reporting System (StARS) upon the reporting of functioning outcomes for national rehabilitation quality reports. A StARS builds upon an ICF-based (International Classification of Functioning, Disability and Health) and interval-scaled common metric.DesignComparison of current ordinal-scaled Swiss national rehabilitation outcome reports including an expert-consensus-based transformation scale with StARS-based reports through descriptive statistical methods and content exploration of further development areas of the reports with relevant ICF Core Sets.SettingSwiss national public rehabilitation outcome quality reports on the clinic level.ParticipantsA total of 29 Swiss rehabilitation clinics provided their quality report datasets including 18 047 patients.InterventionsNeurological or musculoskeletal rehabilitation.Main outcome measuresFunctional Independence Measure™ or Extended Barthel Index.Result...
Introduction The importance of elucidating the relationships between pain, mood and quality of li... more Introduction The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. Methods Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. Results Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and...
IntroductionPatient-reported outcome measures (PROM) or self-completed questionnaires have been u... more IntroductionPatient-reported outcome measures (PROM) or self-completed questionnaires have been used to report outcomes in osteoarthritis (OA) for over 35 years. Choices will always need to be made about what should be measured and, if relevant, what would be the most appropriate PROM to use. The current study aims to describe the available PROMs used in OA and their performance quality, so that informed choices can be made about the most appropriate PROM for a particular task.MethodsThe study included a systematic search for PROMs that have been in use over 17 years (period 2000–2016), and to catalogue their psychometric properties, and to present the evidence in a user-friendly fashion.Results78 PROMs were identified with psychometric evidence available. The domains of pain, self-care, mobility and work dominated, whereas domains such as cleaning and laundry and leisure, together with psychological and contextual factors, were poorly served. The most frequently used PROMs included...
People with multiple sclerosis often stop working earlier than expected. Psychological factors ma... more People with multiple sclerosis often stop working earlier than expected. Psychological factors may have an impact on job retention. Investigation may inform interventions to help people stay in work. To investigate the associations between psychological factors and work instability in people with multiple sclerosis. A multi-method, 2-phased study. Focus groups were held to identify key themes. Questionnaire packs using validated scales of the key themes were completed at baseline and at 8-month follow-up. Four key psychological themes emerged. Out of 208 study subjects 57.2% reported medium/high risk of job loss, with marginal changes at 8 months. Some psychological variables fluctuated significantly, e.g. depression fell from 24.6% to 14.5%. Work instability and anxiety and depression were strongly correlated (χ2 p < 0.001). Those with probable depression at baseline had 7.1 times increased odds of medium/high work instability, and baseline depression levels also predicted later...
BackgroundThe identification of suitable outcome measures will improve the evaluation of integrat... more BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric p...
ObjectivesThe aims were to validate a British English version of the Workplace Activity Limitatio... more ObjectivesThe aims were to validate a British English version of the Workplace Activity Limitations Scale (WALS) linguistically, then test this psychometrically in RA, axial spondyloarthritis (axSpA), OA and FM.MethodsThe WALS was forward translated, reviewed by an expert panel, and cognitive debriefing interviews were conducted. Participants completed a postal questionnaire booklet. Construct (structural) validity was examined by fit to the Rasch measurement model. Concurrent validity included testing between the WALS and the Work Limitations Questionnaire-25 (WLQ-25). Two weeks later, participants were mailed a second questionnaire booklet for test–retest reliability.ResultsMinor wording changes were made to the WALS, then 831 employed participants completed questionnaires: 267 men and 564 women; 53.5 (s.d. 8.9) years of age; with condition duration 7.7 (s.d. 8.0) years. The WALS satisfied Rasch model requirements, and a WALS Rasch transformation table was created. Concurrent vali...
Introduction The Evaluation of Daily Activity Questionnaire is a detailed self-report measure of ... more Introduction The Evaluation of Daily Activity Questionnaire is a detailed self-report measure of activity limitations. It has two parts, 10 scales of symptom severity and 14 daily activity domains, including 138 activities. It has good psychometric properties in rheumatoid arthritis. The aim was next to establish its content validity and acceptability in seven musculoskeletal conditions: ankylosing spondylitis; osteoarthritis; systemic lupus erythematosus; systemic sclerosis; chronic pain; chronic hand/upper limb musculoskeletal disorders; and primary Sjögren's syndrome. Method Participants completed the Evaluation of Daily Activity Questionnaire in their own time, followed by a cognitive debriefing interview to identify their views of importance of including each item and Evaluation of Daily Activity Questionnaire acceptability. Results Six to 12 people with each condition were interviewed ( n = 70): 17 men and 53 women, 57.38 (SD 12.83) years of age and with 13.15 (SD 11.02) y...
Turkish Journal of Physical Medicine and Rehabilitation
Objectives: This study was planned to test the reliability and validity of the Turkish version of... more Objectives: This study was planned to test the reliability and validity of the Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 cerebral palsy (CP) module (parent form) in children with CP. Patients and methods: In the validation study conducted between June 2007 and June 2009, 511 children (299 normal children, 212 children with CP) were assessed by the seven scales of PedsQL [daily activities (DA), school activities (SA), movement and balance (MB), pain and hurt (PH), fatigue (F), eating activities (EA), and speech and communication (SC)]. Reliability was tested by internal consistency and person separation index (PSI); internal construct validity by Rasch analysis and external construct validity by correlation with the Gross Motor Function Classification System (GMFCS) and Functional Independence Measure for Children (WeeFIM). Results: Only 13 children with CP completed the inventory by themselves and thus were excluded. Consequently, 199 children with CP (...
International Journal for Quality in Health Care, 2020
ObjectiveTo demonstrate the influence and added value of a Standardized Assessment and Reporting ... more ObjectiveTo demonstrate the influence and added value of a Standardized Assessment and Reporting System (StARS) upon the reporting of functioning outcomes for national rehabilitation quality reports. A StARS builds upon an ICF-based (International Classification of Functioning, Disability and Health) and interval-scaled common metric.DesignComparison of current ordinal-scaled Swiss national rehabilitation outcome reports including an expert-consensus-based transformation scale with StARS-based reports through descriptive statistical methods and content exploration of further development areas of the reports with relevant ICF Core Sets.SettingSwiss national public rehabilitation outcome quality reports on the clinic level.ParticipantsA total of 29 Swiss rehabilitation clinics provided their quality report datasets including 18 047 patients.InterventionsNeurological or musculoskeletal rehabilitation.Main outcome measuresFunctional Independence Measure™ or Extended Barthel Index.Result...
Introduction The importance of elucidating the relationships between pain, mood and quality of li... more Introduction The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. Methods Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. Results Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and...
IntroductionPatient-reported outcome measures (PROM) or self-completed questionnaires have been u... more IntroductionPatient-reported outcome measures (PROM) or self-completed questionnaires have been used to report outcomes in osteoarthritis (OA) for over 35 years. Choices will always need to be made about what should be measured and, if relevant, what would be the most appropriate PROM to use. The current study aims to describe the available PROMs used in OA and their performance quality, so that informed choices can be made about the most appropriate PROM for a particular task.MethodsThe study included a systematic search for PROMs that have been in use over 17 years (period 2000–2016), and to catalogue their psychometric properties, and to present the evidence in a user-friendly fashion.Results78 PROMs were identified with psychometric evidence available. The domains of pain, self-care, mobility and work dominated, whereas domains such as cleaning and laundry and leisure, together with psychological and contextual factors, were poorly served. The most frequently used PROMs included...
People with multiple sclerosis often stop working earlier than expected. Psychological factors ma... more People with multiple sclerosis often stop working earlier than expected. Psychological factors may have an impact on job retention. Investigation may inform interventions to help people stay in work. To investigate the associations between psychological factors and work instability in people with multiple sclerosis. A multi-method, 2-phased study. Focus groups were held to identify key themes. Questionnaire packs using validated scales of the key themes were completed at baseline and at 8-month follow-up. Four key psychological themes emerged. Out of 208 study subjects 57.2% reported medium/high risk of job loss, with marginal changes at 8 months. Some psychological variables fluctuated significantly, e.g. depression fell from 24.6% to 14.5%. Work instability and anxiety and depression were strongly correlated (χ2 p < 0.001). Those with probable depression at baseline had 7.1 times increased odds of medium/high work instability, and baseline depression levels also predicted later...
BackgroundThe identification of suitable outcome measures will improve the evaluation of integrat... more BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric p...
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