scholarly journals Patient Preference Assessment Reveals Disease Aspects Not Covered by Recommended Outcomes in Polymyositis and Dermatomyositis

2011 ◽  
Vol 2011 ◽  
pp. 1-5 ◽  
Author(s):  
Li Alemo Munters ◽  
Ronald F. van Vollenhoven ◽  
Helene Alexanderson

Objectives. Polymyositis (PM) and dermatomyositis (DM) are characterized by impaired muscle function with a majority of patients developing sustained disability. The aim of this study was to evaluate the patient’s individual priorities (patient preference) of disabilities most important to improve in PM/DM using the MacMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR), to correlate the MACTAR to myositis outcomes and to evaluate its test-retest reliability. Methods. Twenty-eight patients with PM/DM performed recommended outcomes as well as the MACTAR, which was performed twice with one week apart. Results. Sexual activity, walking, biking, social activities, and sleep constituted the predominating disabilities. Seventy-two and 33% of the identified disabilities were not covered by items of the Health Assessment Questionnaire and the Myositis Activities Profile. Correlations between the MACTAR and health-related quality of life measures were = −0.67–0.73, correlations with measures of activities of daily living and participation in society were = 0.51–0.60 with lower correlations for other outcomes. Intraclass correlation (ICC) and weighted Kappa () coefficients were 0.83 and 0.68, respectively, for test-retest reliability of the MACTAR. Conclusions. The MACTAR interview had promising measurement properties and identified patient preference disabilities in PM/DM that were not covered by recommended outcomes.

2012 ◽  
Vol 167 (3) ◽  
pp. 337-342 ◽  
Author(s):  
Alicia Santos ◽  
Eugenia Resmini ◽  
Ma Antonia Martínez-Momblán ◽  
Iris Crespo ◽  
Elena Valassi ◽  
...  

ObjectiveTo evaluate health-related quality of life (HRQoL) in Cushing's syndrome (CS) with the disease-generated CushingQoL questionnaire and to confirm its psychometric properties of test–retest reliability and sensitivity to change.DesignClinical practice conditions in a tertiary referral center.MethodsThe CushingQoL and EuroQoL questionnaires were administered at baseline and during follow-up and correlated with clinical parameters in 59 patients with CS. To check test–retest reliability, stable patients (either biochemically cured or with active hypercortisolism) were evaluated twice. To investigate sensitivity to change, new patients were evaluated at diagnosis and twice more following improvement after successful surgery.ResultsAt baseline, patients with active disease scored lower (indicating worse HRQoL) than those cured on the CushingQoL (46±14 vs 58±20, P<0.05) but not on the EuroQoL-visual analog scale (VAS; 64±20 vs 70±16, P NS). Test–retest reliability of CushingQoL was confirmed in stable patients, both in the ‘cured group’ (intraclass correlation coefficient (ICC)=0.78, n=34) and in the ‘active group’ (ICC=0.66, n=14). Sensitivity to change was confirmed in the ‘improvement group’ (n=11), as the CushingQoL score increased 4±1.5 and 9±3 months after surgery (P<0.01 and <0.001 respectively); the EuroQoL-VAS only improved after 9±3 months (P<0.01). Effect sizes were 1.02 and 1.86 for CushingQoL at 4±1.5 and 9±3 months respectively. Finally, scores of both questionnaires were correlated (r=0.504; P<0.001).ConclusionsThe CushingQoL questionnaire shows good test–retest reliability and sensitivity to change in clinical practice conditions.


2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Claudia Haberland ◽  
Anna Filonenko ◽  
Christian Seitz ◽  
Matthias Börner ◽  
Christoph Gerlinger ◽  
...  

Abstract Background To evaluate the psychometric and measurement properties of two patient-reported outcome instruments, the menstrual pictogram superabsorbent polymer-containing version 3 (MP SAP-c v3) and Uterine Fibroid Daily Bleeding Diary (UF-DBD). Test-retest reliability, criterion, construct validity, responsiveness, missingness and comparability of the MP SAP-c v3 and UF-DBD versus the alkaline hematin (AH) method and a patient global impression of severity (PGI-S) were analyzed in post hoc trial analyses. Results Analyses were based on data from up to 756 patients. The full range of MP SAP-c v3 and UF-DBD response options were used, with score distributions reflecting the cyclic character of the disease. Test-retest reliability of MP SAP-c v3 and UF-DBD scores was supported by acceptable intraclass correlation coefficients when stability was defined by the AH method and Patient Global Impression of Severity (PGI-S) scores (0.80–0.96 and 0.42–0.94, respectively). MP SAP-c v3 and UF-DBD scores demonstrated strong and moderate-to-strong correlations with menstrual blood loss assessed by the AH method. Scores increased in monotonic fashion, with greater disease severities, defined by the AH method and PGI-S scores; differences between groups were mostly statistically significant (P < 0.05). MP SAP-c v3 and UF-DBD were sensitive to changes in disease severity, defined by the AH method and PGI-S. MP SAP-c v3 and UF-DBD showed a lower frequency of missing patient data versus the AH method, and good agreement with the AH method. Conclusions This evidence supports the use of the MP SAP-c v3 and UF-DBD to assess clinical efficacy endpoints in UF phase III studies replacing the AH method.


Author(s):  
Emmanuel Navarro-Flores ◽  
Marta Losa-Iglesias ◽  
Ricardo Becerro-de-Bengoa-Vallejo ◽  
Daniel López-López ◽  
David Rodríguez-Sanz ◽  
...  

Background: The Podiatric Health Questionnaire (PHQ) is a health-related questionnaire consisting of six questions designed for measuring foot health status. To date, the PHQ has only been validated in the English-language version. Thus, this study aimed to perform the Spanish translation and test–retest procedures of the PHQ (PHQ-S). Method: The forward/backward translation and test–retest reliability methods were applied from English to Spanish languages. Regarding the total score for each domain, internal consistency and reliability were determined by the Cronbach α and intraclass correlation coefficient (ICC) with a confidence interval (CI) of 95%. Results: High internal consistency was shown for the six domains: (1) walking with a Cronbach α of 0.97; (2) hygiene and nail care with 0.93 and 093, respectively; (3) foot pain with 0.91; (4) worry and concern domain with 0.904; (5) quality of life with 0.87; and (6) the self-perception of how their feet are feeling measured by a visual analogic scale with 0.92. Excellent test–retest reliability (ICC = 0.99 (95% CI = 0.96–0.98)) was shown for the total score. Conclusions: The PHQ-S was shown to be a valid and reliable tool for an acceptable use in the Spanish population.


2013 ◽  
Vol 38 (1) ◽  
pp. 21-26 ◽  
Author(s):  
Gustav Jarl ◽  
Marie Holmefur ◽  
Liselotte MN Hermansson

Background:The Orthotics and Prosthetics Users’ Survey consists of five modules to assess outcomes of orthotic and prosthetic interventions: lower extremity functional status, upper extremity functional status, client satisfaction with device, client satisfaction with services and health-related quality of life.Objectives:To investigate the test–retest reliability and calculate the smallest detectable difference for all modules of the Swedish Orthotics and Prosthetics Users’ Survey.Study design:Test–retest reliability study design.Methods:A total of 69 patients at a Department of Prosthetics and Orthotics completed Orthotics and Prosthetics Users’ Survey on two occasions separated by a 2-week interval, giving 18 answers on lower extremity functional status, 41 on upper extremity functional status, 53 on client satisfaction with device, 12 on client satisfaction with services and 67 answers on health-related quality of life. Raw scores were converted into Orthotics and Prosthetics Users’ Survey units on a 0–100 scale. Intra-class correlation coefficients, Bland–Altman plots, common person linking plots and t-tests of person mean measures were used to investigate the reliability. The 95% confidence level smallest detectable differences were calculated.Results:The intra-class correlation coefficients ranged from 0.77 to 0.96 for the modules, and no systematic differences were detected between the response occasions. The smallest detectable differences ranged from 7.4 to 16.6 units.Conclusions:The test–retest reliability was satisfactory for all Orthotics and Prosthetics Users’ Survey modules. The smallest detectable difference was large on all modules except the health-related quality of life module.Clinical relevanceThe Orthotics and Prosthetics Users’ Survey modules are reliable and, thus, can be recommended for repeated measurements of patients over time. Relatively large changes are needed to achieve statistical significance when assessing individual patients.


Author(s):  
Chen-Chi Wang ◽  
Jia-Shiou Liao ◽  
Hsiu-Chin Lai ◽  
Yi-Hsuan Lo

Purpose The Voice Handicap Index (VHI) questionnaire assesses the impact of total laryngectomy on voice-related quality of life. This study evaluates the Mandarin VHI, including its internal consistency, test–retest reliability, content validity, and differences in scores for Mandarin alaryngeal patients with pneumatic artificial laryngeal (PA) and esophageal (ES) speech. Method Translation and validation of the VHI questionnaire was performed through the forward–backward translation technique. This study used a sample of 78 PA and 23 ES participants from Taiwan who completed the Mandarin VHI. Forty-two of the alaryngeal participants completed the Mandarin VHI twice over a period of 7–63 days. Results The measurement of the internal consistency of the Mandarin VHI showed a high Cronbach's alpha coefficient for the total score (.975) and the functional (.930), physical (.939), and emotional (.938) subscales. Based on the results of the intraclass correlation coefficients, good test–retest reliability for the total and domain scores was found (intraclass correlation coefficient = .827–.863). Conclusion The Mandarin VHI was validated as an instrument with proper internal consistency and reliability, which supports the Mandarin VHI as a valid instrument for the self-evaluation of handicaps related to voice problems in PA and ES speakers.


2017 ◽  
Vol 122 (5) ◽  
pp. 422-438 ◽  
Author(s):  
Marieke Wouters ◽  
Anna M. van der Zanden ◽  
Heleen M. Evenhuis ◽  
Thessa I. M. Hilgenkamp

Abstract Physical fitness is an important marker for health. In this study we investigated the feasibility and reliability of health-related physical fitness tests in children with moderate to severe levels of intellectual disability. Thirty-nine children (2–18 yrs) performed tests for muscular strength and endurance, the modified 6-minute walk test (6mwt) for cardiorespiratory fitness, and body composition tests, and 30–97% of the tests were successfully completed. Short-term test-retest reliability of all tests was good (Intraclass Correlation Coefficient [ICC] &gt; .8), long-term test-retest reliability was good for most tests (ICC &gt; .7), but low ICCs were found for most strength tests. Measuring body composition and cardiorespiratory fitness is feasible and reliable. Measuring muscle endurance is fairly feasible and reliable.


2004 ◽  
Vol 94 (2) ◽  
pp. 725-732 ◽  
Author(s):  
Fredric D. Wolinsky ◽  
Stacie M. Metz ◽  
William M. Tierney ◽  
Kathleen W. Wyrwich ◽  
Ajit N. Babu ◽  
...  

This study investigated the short-term stability of the 1991 Mirowsky-Ross 2 × 2 Index of the Sense of Control. From an ongoing longitudinal study, 304 subjects were randomly selected for test-retest interviews occurring 1 to 4 days after their regularly scheduled first follow-up interview. Test-retest reliability was assessed at the item level using percent agreement and weighted kappa. At the scale score level, reliability was assessed with the intraclass correlation coefficient ( ICC). ICCs were also calculated within categories of demographic, socioeconomic, psychosocial, and functional status characteristics. There was moderate to substantial item-level agreement (mean weighted kappa = .51; weighted kappa range =.38 to .66). At the scale score level there was substantial agreement ( ICC =.71). No appreciable differences in ICC values were found in the demographic, socioeconomic, psychosocial, and functional comparisons of status characteristics. Thus, this sense of control measure has acceptable test-retest reliability and is appropriate for use in longitudinal research.


Author(s):  
Xin Ai ◽  
Xian Yang ◽  
Jia-min Xu ◽  
Wen-xia Yang ◽  
Ying-Mei Tang

Objective The purpose of this systematic review was to assess the suitability of HRQOL questionnaires in patients with primary biliary cholangitis. Methods Five electronic databases were searched. The validity of translated questionnaires, floor and ceiling effects, internal consistency and test-retest reliability were investigated. Results Forty-four studies were included, of which fifteen HRQOL questionnaires were identified. The instruments used most frequently were the PBC-40 (n = 22), followed by the SF-36 (n = 19), PBC-27(n=4), CLDQ (n = 3) and NIDDK-QA(n=2), the remaining instruments were uesd only once. Tweenty-six studies used a translated HRQOL questionnaire and only six reported or referenced a validation of the translated questionnaire. Conclusions PBC-specific HRQOL questionnaires used in primary biliary cholangitis have generally good psychometric properties. But lots of studies directly applied the HRQOL tools without verifying the HRQOL tools validity and reliability in PBC patients. Thus, it is better for clinicians and researchers to test the measurement properties of HRQOL questionnaires before use it.


Pain Medicine ◽  
2019 ◽  
Vol 21 (1) ◽  
pp. 101-108
Author(s):  
Tara L Packham ◽  
Claude J Spicher ◽  
Joy C MacDermid ◽  
Norman D Buckley

Abstract Objective There is a need for reliable and valid clinical assessment tools for quantifying allodynia in neuropathic pain. Allodynography has been proposed as a useful standardized procedure for clinical assessment of mechanical allodynia. This study (www.clinicaltrials.gov NCT02070367) undertook preliminary investigation of the measurement properties of allodynography, a new standardized clinical examination procedure for mapping the area of cutaneous allodynia. Methods Persons with pain in one upper extremity after complex regional pain syndrome, a peripheral nerve injury, or who had recently experienced a hand fracture were recruited for assessment of static mechanical allodynia (based on perception of a 15g force stimulus delivered by Semmes-Weinstein monofilament #5.18 as painful) by two raters at baseline; the assessment was repeated one week later. Results Single-measures estimates suggested inter-rater reliability for allodynography was excellent at an intraclass correlation coefficient (ICC) of 0.97 (N = 12); test–retest reliability was also excellent at ICC = 0.89 (N = 10) for allodynography (P &lt; 0.001 for both). Confidence intervals’ lower bounds confirm inter-rater reliability as excellent (0.90) but were less definitive for test–retest (0.59). Conclusions This preliminary study supports the inter-rater and test–retest reliability of allodynography. Studies on larger samples in multiple contexts and reporting other measurement properties are warranted.


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