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Disease-specific Measures (disease-specific + measure)
Selected AbstractsHealth-related quality of life in patients with Primary Sjögren's Syndrome and Xerostomia: a comparative studyGERODONTOLOGY, Issue 1 2002Jocelyne Rostron Abstract Objective: To compare the health status of groups of Primary Sjögren's and Xerostomia patients, using the Medical Outcomes Short Form 36 (SF-36). The SF-36 is a generic measure, divided into eight domains, used in the assessment of health-related quality of life. Patients and methods: The SF-36 was given to 2 groups: Group 1 comprised 43 patients diagnosed with Primary Sjögren's Syndrome (1SS) and an unstimulated whole salivary flow rate (UFR) of <0.1 ml/min). Group 2 (n = 40) reported Xerosiomia but had an UFR >0.2 ml/min. Sub groups of patients in Groups 1 and 2 were compared with community normative data, for the SF-36 Results: There were trends to suggest lower SF36 scores for 1SS patients but there were no significant differences between the mean domain scores of Groups 1 and 2. 1SS and Xerostomia patients registered lower mean scores across all 8 domains, compared with normative community data. Conclusion: The SF-36 was unable to detect significant differences between subjects with 1SS and Xerostomia but a larger sample size is required to confirm these findings. The results of this limited study suggest that a disease-specific measure is required to assess the impact 1SS on health-related Quality of life (QOL). [source] Changes in Quality-of-Life After Pacemaker Implantation: Responsiveness of the Aquarel QuestionnairePACING AND CLINICAL ELECTROPHYSIOLOGY, Issue 3 2001MONIQUE A. M. STOFMEEL STOFMEEL, M.A.M., et al.: Changes in Quality-of-Life After Pacemaker Implantation: Responsiveness of the Aquarel Questionnaire. Before being introduced for widespread use, health status instruments should be evaluated for reliability, validity, and responsiveness to relevant clinical changes. In a previous study the validity and reliability of Aquarel, a disease-specific quality-of-life (QOL) questionnaire for pacemaker patients, were tested and found satisfactory. The purpose of this study was to assess the sensitivity to change in health of Aquarel. A cohort of 51 patients was assessed at baseline and at 4,6 weeks after pacemaker implantation. We compared the sensitivity to change over time on the Aquarel scores to the scores on the SF-36 using various techniques (t -test value, effect size, standard error of measurement). Using the 1-standard error of measurement (SEM) criterion for clinically relevant change, Aquarel seemed to provide better classification of patients compared to the SF-36 alone. This study supports the value of Aquarel as a disease-specific measure of QOL in pacemaker patients. [source] Quality of life measurement in paediatric and adolescent populations with HIV: a review of the literatureCHILD: CARE, HEALTH AND DEVELOPMENT, Issue 4 2009P. A. Garvie Abstract Purpose To review the quality and utility of currently available self-report generic quality of life (QOL) and health-related quality of life (HRQOL) measures for use with children and adolescents with human immunodeficiency virus and/or acquired immunodeficiency syndrome (HIV/AIDS). Methods Literature searches were conducted to identify QOL and HRQOL measures developed for, adapted for, or otherwise used with paediatric and adolescent populations with HIV/AIDS. The quality of measures (i.e. item generation techniques, instrument properties including reliability, validity and responsiveness) were compared and critically evaluated. Results Nineteen QOL/HRQOL measures were identified. Item content was generated from the respondent (adult) population in only eight (42%) measures. Seventeen (90%) measures reported internal reliability in the accepted range between 0.70 and 0.90 and four (21%) reported reproducibility statistics in this range. Although validity was reported for 19 (100%) measures, only six (32%) showed evidence for three or more properties, with construct validity being the most commonly reported aspect. The authors of eight (42%) measures reported evidence for responsiveness. Conclusions While almost all measures reviewed demonstrated adequate psychometric properties, only one-third demonstrated all aspects of validity, and less than half demonstrated responsiveness. None included paediatric or adolescent populations with HIV/AIDS in their development, neglecting to obtain input from target respondents in item generation to determine what health-related and daily functioning factors are of importance to them. Despite noted limitations, the AUQUEI or the SWED-QUAL appear the best currently available generic measure, and the MQOL-HIV the preferred disease-specific measure, at least for use with older adolescents/young adults. [source] Longitudinal validity and responsiveness of the Food Allergy Quality of Life Questionnaire , Parent Form in children 0,12 years following positive and negative food challengesCLINICAL & EXPERIMENTAL ALLERGY, Issue 3 2010A. DunnGalvin Summary Background There are no published studies of longitudinal health-related quality of life (HRQL) assessments of food-allergic children using a disease-specific measure. Objective This study assessed the longitudinal measurement properties of the Food Allergy Quality of Life Questionnaire , Parent Form (FAQLQ-PF) in a sample of children undergoing food challenge. Methods Parents of children 0,12 years completed the FAQLQ-PF and the Food Allergy Independent Measure (FAIM) pre-challenge and at 2 and 6 months post food challenge. In order to evaluate longitudinal validity, differences between Group A (positive challenge) and Group B (negative challenge) were expected over time. We computed correlation coefficients between change scores in the FAQLQ-PF and change scores in the FAIM. To determine the minimally important difference (MID), we used distributional criterion and effect size approaches. A logistic regression model profiled those children falling below this point. Results Eighty-two children underwent a challenge (42 positive; 40 negative). Domains and total score improved significantly at pos-challenge time-points for both groups (all P<0.05). Sensitivity was demonstrated by significant differences between positive and negative groups at 6 months [F(2, 59)=6.221, P<0.003] and by differing improvement on relevant subscales (P<0.05). MID was 0.45 on a seven-point response scale. Poorer quality of life at baseline increased the odds by over 2.0 of no improvement in HRQL scores 6-month time-point. General maternal health (OR 1.252), number of foods avoided (OR 1.369) and children >9 years (OR 1.173) were also predictors. The model correctly identified 84% of cases below MID. Conclusion The FAQLQ-PF is sensitive to change, and has excellent longitudinal reliability and validity in a food-allergic patient population. The standard error of measurement value of 0.5 points as a threshold for meaningful change in HRQL questionnaires was confirmed. The FAQLQ-PF may be used to identify problems in children, to assess the effectiveness of clinical trials or interventions, and to guide the development of regulatory policies. Cite this as: A. DunnGalvin, C. Cullinane, D. A. Daly, B. M. J. Flokstra-de Blok, A. E. J. Dubois and J. O'B. Hourihane, Clinical & Experimental Allergy, 2010 (40) 476,485. [source] Patient-assessed health outcome measures for diabetes: a structured reviewDIABETIC MEDICINE, Issue 1 2002A. M. Garratt Abstract Aims To identify available disease-specific measures of health-related quality of life (HRQL) for diabetes and to review evidence for the reliability, validity and responsiveness of instruments. Methods Systematic searches were used to identify instruments. Instruments were assessed against predefined inclusion and exclusion criteria. Letters were sent to authors requesting details of further instrument evaluation. Information relating to instrument content, patients, reliability, validity and responsiveness to change was extracted from published papers. Results The search produced 252 references. Nine instruments met the inclusion criteria: Appraisal of Diabetes Scale (ADS), Audit of Diabetes-Dependent Quality of Life (ADDQoL), Diabetes Health Profile (DHP-1, DHP-18), Diabetes Impact Measurement Scales (DIMS), Diabetes Quality of Life Measure (DQOL), Diabetes-Specific Quality of Life Scale (DSQOLS), Questionnaire on Stress in Diabetic Patients-Revised (QSD-R), Diabetes-39 (D-39) and Well-being Enquiry for Diabetics (WED). The shortest instrument (ADS) has seven items and the longest (WED) has 50 items. The ADS and ADDQoL are single-index measures. The seven multidimensional instruments have dimensions covering psychological well-being and social functioning but vary in the remainder of their content. The DHP-1 and DSQOLS are specific to Type 1 diabetes patients. The DHP-18 is specific to Type 2 diabetes patients. The DIMS and DQOL have weaker evidence for reliability and internal construct validity. Patients contributed to the content of the ADDQoL, DHP-1/18, DQOL, DSQOLS, D-39, QSD-R and WED. The authors of the ADDQoL, DHP-1/18, DQOL, DSQOLS gave explicit consideration to content validity. The construct validity of instruments was assessed through comparisons with instruments measuring related constructs and clinical and sociodemographic variables. None of the instruments has been formally assessed for responsiveness to changes in health. Conclusions Five of the diabetes-specific instruments have good evidence for reliability and internal and external construct validity: the ADDQoL, DHP-1/18, DSQOLS, D-39 and QSD-R. Instrument content should be assessed for relevance before application. The instruments should be evaluated concurrently for validity and responsiveness to important changes in health. [source] What do we know about quality of life in dementia?INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, Issue 1 2009A review of the emerging evidence on the predictive, explanatory value of disease specific measures of health related quality of life in people with dementia Abstract Objective Given its complexity, there is growing consensus on the need to measure patient-rated broad outcomes like health-related quality of life (HRQL) as well as discrete functions like cognition and behaviour in dementia. This review brings together current data on the distribution, determinants and course of HRQL in dementia to investigate the predictive and explanatory value of measures of HRQL in people with dementia. Design A systematic review of papers in English published up to October 2007 to identify data on the use of disease-specific measures of HRQL in dementia. Results There are no clear or consistent associations between socio-demographic variables and HRQL. There is no convincing evidence that lower cognition or greater activity limitation is associated with lower HRQL. There is a strong suggestion that depression is consistently associated with decreased HRQL in dementia. However, the magnitude of the associations observed is moderate only and the proportion of variance explained is low suggesting that depression and HRQL are different constructs. We currently know almost nothing about the natural history of HRQL in dementia or what attributes or interventions promote or inhibit HRQL life for people with dementia. Conclusions While in other illnesses there may be simple association between HRQL and an easily measurable clinical variable, in dementia this is not so. There are now instruments available with which to measure disease-specific HRQL directly in clinical trials and other studies that can yield informative data. Copyright © 2008 John Wiley & Sons, Ltd. [source] A psychometric evaluation of the Chinese version of the Cardiovascular Limitations and Symptoms Profile in patients with coronary heart diseaseJOURNAL OF CLINICAL NURSING, Issue 17 2008Violeta Lopez Aims and objectives., The aim of this study was to translate from English and evaluate the validity, reliability and cultural relevance of the Cardiovascular Limitations and Symptoms Profile (CLASP) as a health-related quality-of-life (HRQL) measure in Chinese patients with coronary heart disease. Background., Improvement in HRQL is increasingly used as a primary outcome in determining the treatment benefit using a generic instrument. However, disease-specific instruments are being cited as more responsive and sensitive in detecting even the smallest changes in health status. Therefore, valid and reliable disease-specific measures for patients with coronary heart disease are now being developed and evaluated. Design., Questionnaire design. Methods., The translation equivalence and content validity of the Chinese version of CLASP were evaluated by an expert panel. Measurement performance was tested on a convenience sample of 369 Chinese coronary heart disease patients. Results., The instrument demonstrated good content validity (content validity index 0·94), acceptable internal consistency (>0·70), except for two subscales of angina and tiredness and significant positive correlations among the subscales of CLASP, Hospital Anxiety Depression Scale and the Short Form 36 Health Survey. Principal components analysis revealed nine factors that together explained 69% of the variance. Conclusions., The results of this study support that CLASP is a valid and reliable disease-specific health status measure for Chinese patients with coronary heart disease. However, further item modifications and testings are needed when considering the cross-cultural context. Relevance to clinical practice., The use of disease-specific HRQL measures could effectively evaluate nursing interventions in clinical practice. Further validations of CLASP among different diagnostic groups, such as patients with heart failure and those who have survived an acute myocardial infarction, would provide further empirical support for its use with all patients with heart disorders. [source] Multi-item outcome measures for lateral ligament injury of the ankle: a structured reviewJOURNAL OF EVALUATION IN CLINICAL PRACTICE, Issue 2 2004K.L. Haywood BSc(Hons) DPhil MCSP Abstract Objective, To identify and review evidence relating to the measurement properties of published multi-item outcome measures for the conservative management of lateral ligament injuries of the ankle. Methods, Systematic literature searches were used to identify measures, which were then assessed against pre-defined criteria relating to development, item content, reliability, validity and responsiveness. Results, Seven disease-specific measures of ankle status [Ankle Joint Functional Assessment Tool, Clinical Trauma Severity Score, Composite Inversion Injury Scale, Kaikkonen Functional Scale (KFS), Karlsson Ankle Function Score (KAFS), Olerud and Molander Ankle Score (OMAS), and the Point System] and two generic measures of health (McGill Pain Questionnaire, Sickness Impact Profile) met the review inclusion criteria. While all measures had been used in acute injuries, only two had also been applied during later stages of recovery (>6 months). The studies covered a comprehensive range of graded ligament injuries. Expert opinion dominated item generation for all measures. All measures lack evidence of test-retest or internal consistency reliability in patients with ankle sprain. Several measures were assessed for validity through comparison with other measures, but there was limited evidence of construct validity and no formal assessment of responsiveness for any measure. Conclusion, The disappointing lack of evidence for measurement properties suggests that any measure should be used with caution until appropriate evidence is provided. On the basis of limited evidence, the KFS offers the most promising approach to a combined clinician- and patient-assessment of ankle function, and the KAFS or OMAS if a patient-assessed evaluation of function is required. [source] Meta-analyses of the effect of false-positive mammograms on generic and specific psychosocial outcomesPSYCHO-ONCOLOGY, Issue 10 2010Talya Salz Abstract Objectives: While a previous meta-analysis found that false-positive mammography results affect women's likelihood of returning for screening, effects on well being have yet to be meta-analyzed. We investigated whether the effects of false-positive mammograms on women's well-being are limited to outcomes specific to breast cancer. Methods: We searched MEDLINE for studies of the psychosocial effects of false-positive results of routine screening mammography. We pooled effect sizes using random effects meta-analysis. Results: Across 17 studies (n=20,781), receiving a false-positive mammogram the result was associated with differences in all eight breast-cancer-specific outcomes that we examined. These included greater anxiety and distress about breast cancer as well as more frequent breast self-exams and higher perceived effectiveness of screening mammography. False positives were associated with only one of six generic outcomes (i.e. generalized anxiety), and this effect size was small. Conclusions: False-positive mammograms influenced women's well-being, but the effects were limited to breast-cancer-specific outcomes. Researchers should include disease-specific measures in future studies of the consequences of false-positive mammograms. Copyright © 2010 John Wiley & Sons, Ltd. [source] | ||||||||||