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1.
PURPOSE OF REVIEW: Health-related quality of life is a new outcome variable in neurology. Several generic measures aim at assessing this variable in adults with neurological diseases. Disease-specific measures are still rare; however, individuals with neurological diseases frequently suffer from cognitive impairment, yet are often excluded from health-related quality of life investigations. When included in such studies, cognitive functioning is not monitored via neuropsychological evaluation, possibly leading to methodological problems. Papers from May 2004 until July 2005 are reviewed with respect to psychometric quality and information about persons after traumatic brain injury, stroke, Parkinson's disease or dementia. RECENT FINDINGS: Several new cross-sectional and longitudinal outcome studies are reviewed. The Medical Outcome Study Short Form with 36 items, the Sickness Impact Profile and the Nottingham Health Profile were identified as the most frequently used measures in neurology. For traumatic brain injury, two new generic instrument validations (Life Satisfaction Index-A, Subjective Quality of Life Profile) and one internationally validated disease-specific development (Quality of Life after Brain Injury) were found; for stroke, one disease-specific tool (Burden of Stroke Scale) was identified. In Parkinson's disease, the disease-specific health-related quality of life measure Parkinson's Disease Questionnaire-39 is well validated. In dementia, three dementia-specific instruments (Quality of Life for Dementia, Quality of Life in Late-Stage Dementia Scale and Quality of Life in Alzheimer's Disease Scale) seem to be valid. SUMMARY: In neurology, only a few measures have been developed and validated for respondents with cognitive impairment, often showing poorer validity results than studies involving healthy persons. Health-related quality of life assessment should therefore be validated in the specific diseases and, if necessary, combined with a neuropsychological evaluation and a disease-specific health-related quality of life measure.  相似文献   

2.
BACKGROUND: A review of stroke-specific quality of life (QOL) measures indicated little evidence of their validity/reliability. PURPOSE: To describe the development/validation of a new measure - the Newcastle Stroke-Specific Quality of Life Measure (NEWSQOL). METHODS: Phase I: qualitative interviews (28 stroke patients) determined QOL issues for inclusion in the measure. Initial items/response categories were pre-tested (30 patients). Administration of the NEWSQOL in the item reduction stage (100 patients) identified poorly performing items and factor analysis showed likely domains. Internal consistency was examined. Phase II: NEWSQOL and comparator measures were administered (106 patients) to examine validity/test-retest reliability. RESULTS: Phase I: 140 items were identified for initial inclusion. Qualitative pre-testing led to an extensive revision. Item reduction resulted in a final measure of 56 items in 11 domains (feelings, activities of daily living/self-care, cognition, mobility, emotion, sleep, interpersonal relationships, communication, pain/sensation, vision, fatigue; Cronbach's alpha = 0.71-0.90). Phase II: NEWSQOL domain scores, except cognition, were moderately/highly correlated (0.45-0.76) with relevant comparator measures. NEWSQOL domains feelings, communication and cognition low/moderately correlated with Barthel Index scores (-0.49 to -0.28), as predicted. Test-retest reliability was high (intraclass correlation coefficient range 0.78-0.92). CONCLUSIONS: NEWSQOL is an acceptable, patient-derived, interviewer-administered, stroke-specific QOL measure with evidence of reliability and validity, making it a promising instrument for assessing QOL after stroke. Involvement of relevant patients in determining the content and format considerably enhances confidence in its validity.  相似文献   

3.
Whereas several clinical endpoints in monitoring the response to treatment in patients with Huntington's disease (HD) have been explored, there has been a paucity of research in the quality of life in such patients. The aim of this study was to validate the use of two generic health-related quality of life instruments (the Short Form 36 health survey questionnaire [SF-36] and the Sickness Impact Profile [SIP]) and to evaluate their psychometric properties. We found that both instruments demonstrated acceptable convergent validity and reliability for patients and carers. However, there was an advantage in using the SF-36 because of its more robust construct validity and test-retest reliability; furthermore, motor symptoms appeared to influence some strictly nonmotor dimensions of the SIP. On a pragmatic level, the SF-36 is shorter and quicker to administer and, therefore, easier for patients at various stages of the disease to complete. Thus, the SF-36 would appear to be the recommended instrument of choice for patients with HD and their carers, although further work needs to be done to investigate the sensitivity of this instrument longitudinally.  相似文献   

4.
Measuring quality of life (QOL) has made essential contributions for the management of patients with multiple sclerosis (MS). QOL measures may be used for helping to assess the complex changes which patients with MS have to go through during the disease trajectory, and they may be used for pharmacoeconomic research. The large number of tests available includes generic ones such as Short Form SF-36 and Sickness Impact Profile, health-related ones such as MSQOL-54, FAMS, or HAQUAMS, and patient generated measures such as the Patient Generated Index and SEIQOL-DW. Depression, cognitive impairment, and fatigue are important factors influencing QOL. Since the different tests measure quite different facets of QOL, this review intends to help the reader select a tool suited to the aim and specific question. It is hoped that QOL measures may help to better understand patients, to become a more helpful medical partner, to assist patients to develop perspectives for their future, and to decide about therapies or even palliative interventions.  相似文献   

5.
Quality of life (QOL) is an often-used but it remains an ill-understood concept in medicine. Literature suggests 3 important approaches to operationalize and measure QOL: Health-related quality of life (HRQOL), well-being, and QOL as a superordinate construct. To measure the various instruments of HRQOL (SF-36 and Sickness Impact Profile) and well-being (Satisfaction With Life Scale and Life Satisfaction Questionnaire LiSat) are used. Domains on which QOL of persons with SCI lag behind QOL of the general population are identified. Overall, this paper suggests: (1) that inspection of the QOL measure used in a particular study is necessary to identify the domains of QOL that are measured, (2) that most measures lack sufficient evidence of reliability and validity, and (3) that longitudinal studies starting in the early phase of rehabilitation are necessary to reveal the course and predictors of QOL of persons with SCI.  相似文献   

6.
OBJECTIVES: To study patients with ALS to determine the following: 1) the relationship between physical function and quality of life (QOL); 2) the instruments that best reflect patients' own ratings of QOL; and 3) whether spiritual/religious factors play a role in determining QOL. METHODS: The authors prospectively studied 96 patients with ALS using several instruments, including the McGill Quality of Life (MQOL) instrument, the Idler Index of Religiosity, the Sickness Impact Profile (SIP)/ALS-19, and several measures of strength and physical function. RESULTS: QOL as assessed by patients (MQOL single item score) did not correlate with measures of physical function and strength, but correlated with the total MQOL score (p < 0.0005), the psychological and existential subscores of MQOL (p < 0. 0005), the support subscore of MQOL (p = 0.001), and the total Idler score (p = 0.001). In contrast, correlations between SIP/ALS-19 and these measures were not significant, although SIP/ALS-19 correlated with measures of physical function and strength. CONCLUSIONS: QOL, as assessed by the patient with ALS, does not correlate with measures of strength and physical function, but appears to depend on psychological and existential factors, and thus may be measured well by the MQOL scale. Spiritual factors and support systems appear to play roles as well. SIP/ALS-19 is a good measure of physical function, but not of overall QOL.  相似文献   

7.
Health‐related quality of life is an important patient‐reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health‐related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health‐related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health‐related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives—use in Parkinson's disease, use by multiple research groups, and clinimetric properties—a final classification as “recommended,” “suggested,” or “listed” was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36‐Item Short‐Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39‐Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease–Psychosocial) reached the level of “recommended.” The 39‐item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are “suggested.” With a little additional effort in completing the stipulated requirements, they could reach the “recommended” level. At present there is a wide variety of health‐related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment. © 2011 Movement Disorder Society  相似文献   

8.
The approval of tissue plasminogen activator to treat acute ischemic stroke and the continuing need to evaluate new neuroprotective drugs and thrombolytic agents in clinical trials have focused interest on the quantitative evaluation of stroke patients. Emphasizing outcomes management in clinical practice has also heightened the importance of quantitative evaluation using assessment scales. Investigators who evaluate, revise, and use assessment scales for the measurement of stroke impairment, disabilites, and handicaps face many challenges. These problems include the heterogeneity of stroke and the need to determine appropriate outcome measures, to use neurological deficit scales that can accurately predict disability, to ensure adequate follow-up, and to use scales that can be used outside of clinical trials by all health care professionals. Such scales should be easily and quickly administered, responsive, valid, and reliable. The most important categories of stroke scales are neurological deficit scales (e.g., Canadian Neurological Scale, European Stroke Scale, and National Institutes of Health [NIH] Stroke Scale), functional outcome scales (e.g., Barthel Index), and global outcome scales (e.g., Modified Rankin Scale). Although stroke-specific, health-related quality-of-life (HRQL) scales have yet to be developed and validated, general HRQL scales such as the Nottingham Health Profile, the Medical Outcomes Study Short Form-36, the Sickness Impact Profile, and the Health Utilities Index may be used to assess stroke patients. Lacking the ideal single stroke outcome scale, we continue to recomend a combination of scales: the NIH Stroke Scale (or similar deficit scale), the Barthel Index, and the Rankin Scale.  相似文献   

9.
OBJECTIVE: People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. METHOD: Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning, Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS. RESULTS: Disabilities contributed to a unique and substantial extent to QOL variance. "Impairments in mental functions" was the most important QOL predictor. "Fatigue" showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and 'activities' components. CONCLUSION: Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.  相似文献   

10.
The ALS Functional Rating Scale (ALSFRS) is a validated rating instrument for monitoring the progression of disability in patients with amyotrophic lateral sclerosis (ALS). One weakness of the ALSFRS as originally designed was that it granted disproportionate weighting to limb and bulbar, as compared to respiratory, dysfunction. We have now validated a revised version of the ALSFRS, which incorporates additional assessments of dyspnea, orthopnea, and the need for ventilatory support. The Revised ALSFRS (ALSFRS-R) retains the properties of the original scale and shows strong internal consistency and construct validity. ALSFRS-R scores correlate significantly with quality of life as measured by the Sickness Impact Profile, indicating that the quality of function is a strong determinant of quality of life in ALS.  相似文献   

11.
Quality of life after a first ischemic stroke   总被引:1,自引:0,他引:1  
Background – Studies on determinants of quality of life (QOL) after a stroke focus on one aspect (most important: neurological deficit, mood disorders or cognitive failure) and as such provide no insight in the relative contribution of each factor on QOL. The groups of patients studied often contain victims of different types of stroke. This inhomogenity in patients leads to further confusion about QOL after stroke. Objective – To evaluate in one study factors important for QOL in the period 3–12 months after a first one-sided ischemic stroke in the region of the middle cerebral artery. Design – Measures for QOL (Sickness Impact Profile, SIP), cognitive status (Wechsler Adult Intelligence Scale revised), mood and neurological deficit were scored 3, 6 and 12 months after the stroke. Setting – Successive patients admitted to a general hospital and rehabilitation clinic in The Hague, The Netherlands. Patients – A complete examination was performed three times in 35 patients. The results were compared to those of 20 controls matched for age, last occupation and educational level. Results – There was no significant neurological improvement between 3 and 12 months after the stroke. Cognition was impaired when compared to the estimated premorbid level and to the controls. There was incomplete recovery over the study interval. The patients as a group were depressed and remained so over the period of the study. The resulting quality of life scores were abnormal at 3 months and improved only slightly. Stepwise regression analysis revealed that depression and degree of paresis were the most important variables for the SIPtotal outcome. Conclusions – In a homogenous group of stroke patients the QOL improved somewhat in the period 3 to 12 months after the stroke but was still highly abnormal after 1 year. The decrease in QOL was correlated with depression and – to some degree – with neurological deficit, but not to cognitive disturbances.  相似文献   

12.
Measuring quality of life in a way that is meaningful to stroke patients   总被引:5,自引:0,他引:5  
OBJECTIVE: To identify predictors of poststroke quality of life. BACKGROUND: Health-related quality of life (HRQOL) measures assess the impact of disease on the physical, emotional, and social aspects of patients' lives. Although HRQOL measures are used increasingly, factors associated with HRQOL poststroke and the ability of stroke-specific versus generic HRQOL measures to predict patient-reported HRQOL are not well known. METHODS: A total of 71 patients were evaluated 1 month postischemic stroke with a new stroke-specific HRQOL measure-the SS-QOL-and the SF-36, a generic HRQOL measure. Stroke severity, impairments, and functional limitations were also measured. Demographic variables and outcome measure scores were compared between patients rating their overall HRQOL the same as pre-stroke versus those with overall HRQOL worse than prestroke. Independent predictors of overall HRQOL were identified using multivariable modeling. RESULTS: Variables associated with better overall HRQOL were higher (better) SS-QOL and Barthel Index scores, and lower (better) NIH Stroke Scale and Beck Depression Inventory scores. Independent predictors of good overall HRQOL were the SS-QOL score (odds ratio [OR], 2.97; 95% CI, 1.3, 7.1; p = 0.01) and NIH Stroke Scale score (OR, 0.69; 95% CI, 0.47, 0.99; p = 0.05). Demographic factors and SF-36 scores were not associated with overall HRQOL ratings. CONCLUSIONS: Stroke-specific quality of life score and patient impairments predict patient-reported overall health-related quality of life (HRQOL) poststroke. SF-36 scores were not associated with overall HRQOL ratings. Disease-specific HRQOL measures are more sensitive to meaningful changes in poststroke HRQOL and may thus aid in identifying specific aspects of poststroke function that clinicians and "trialists" can target to improve patients' HRQOL after stroke.  相似文献   

13.
Quality of life in sleep disorders   总被引:5,自引:0,他引:5  
Quality of life is a major outcome variable in choosing and evaluating treatment alternatives for sleep disorders. However, the number of well validated and sufficiently responsive quality of life measures for use with this population is limited. The SF-36, Nottingham Health Profile (NHP) and Sickness Impact Profile (SIP) are the most frequently used generic measures. The Functional Outcomes of Sleep Questionnaire (FOSQ) and Sleep Apnoea Quality of Life Index (SAQLI) are useful as condition/disease specific measures. However there are not yet specific measures in common use for other sleep disorders. Results across the sleep disorders that have been studied, primarily sleep apnea, narcolepsy, restless legs and insomnia, have consistently shown poorer quality of life than population norms prior to treatment, particularly in those dimensions related to sleep, energy and fatigue. Before treatment scorespes typically are of similar magnitude to those found among individuals with other chronic diseases such as hypertension and chronic obstructive pulmonary disease. With treatment quality of life scores may or may not improve to the level of population norms, suggesting that currently available treatments may not fully reverse the effects of the common sleep disorders.  相似文献   

14.
This paper outlines approaches taken to the measurement of outcome from a rehabilitation programme for individuals with traumatic brain injury (TBI). It describes methods used to evaluate progress made by individuals towards the attainment of goals within the programme, including the use of a Role Checklist and Goal Attainment Scaling. Maintenance of gains and long-term outcome in a range of life domains over 5 years after injury has been documented using a structured questionnaire, on which we obtained good inter-rater reliability. By 5 years after injury, the majority of individuals with TBI were in reasonable agreement with their close others regarding the presence of cognitive and behavioural changes. Standardised measures used in addition to the structured questionnaire have included the Sickness Impact Profile, the Craig Handicap Assessment and Reporting Technique (CHART), and the Leeds Scales for the Self-assessment of Anxiety and Depression. Findings and inter-correlations of all these measures are discussed. Emotional adjustment appears to have a significant influence upon self-reporting of problems and changes on measures such as the Sickness Impact Profile. It is therefore important to use more objective measures of handicap in a range of domains, such as the CHART, in addition to self-report measures.  相似文献   

15.
INTRODUCTION: Atypical antipsychotic drugs, with superior tolerability and possibly superior efficacy, were expected to give schizophrenia patients better quality of life (QOL) than conventional treatment. Research findings are equivocal. METHOD: We evaluated QOL using three subjective measures--Drug Attitude Inventory (DAI); Sickness Impact Profile (SIP); Schizophrenia Quality of Life Scale (SQLS)--in 126 routinely seen patients whose treatment was stable for six months, regardless of co-morbidity, current clinical status and concomitant medications. Severity of disorder was assessed with the Global Assessment Schedule (GAS). RESULTS: Fifty patients were on conventional treatment and 76 on atypical treatment. Atypical patients were more likely to be abusing substances (p = 0.02) and living independently (p = 0.00). Conventionally treated patients were older than atypically treated patients. Conventionally treated patients suffered schizophrenia almost twice as long as atypically treated patients. Atypically treated patients enjoyed substantially better quality of life than conventionally treated patients on all measures. The effects of confounding variables, i.e. age, duration, accommodation, co-morbid substance misuse and time spent in hospital, were evaluated with the General Linear Model. This confirmed the status of drug treatment as the primary predictor of all aspects of QOL. CONCLUSION: We conclude that quality of life is genuinely superior on atypical treatment even allowing for the confounding effects of differential prescribing habits: atypical treatment tends to be reserved for younger, less seriously ill patients. There is no scientific or clinical rationale to support this practice.  相似文献   

16.
Several studies were undertaken to assess the psychometric properties (reliability and initial convergent and discriminant construct validity) of the Neurological Quality of Life Questionnaire (NeuroQOL). The NeuroQOL contains 114 items answered in self report Likert format, with higher scores reflecting better quality of life. Study one compared the questionnaire with existing quality of life measures (Symptom Distress Scale, Sickness Impact Profile) and a significant (p<0.05) correlation was found. Studies two through five evaluated the relationship between the NeuroQOL and disease stage, psychological, neuropsychological and neurological measures, and a significant correlation was also found with each domain. The internal consistency reliability (alpha=0.96), split half reliability (r(12)=0.97), and test-retest reliability (coefficients were 0.78 for 6 months and 0.67 for one year intervals between test and retest) were all found to be high and adequately stable. Overall, these results indicate acceptable reliability and initial construct validity for the NeuroQOL.  相似文献   

17.
Development of a stroke-specific quality of life scale.   总被引:42,自引:0,他引:42  
BACKGROUND AND PURPOSE: Clinical stroke trials are increasingly measuring patient-centered outcomes such as functional status and health-related quality of life (HRQOL). No stroke-specific HRQOL measure is currently available. This study presents the initial development of a valid, reliable, and responsive stroke-specific quality of life (SS-QOL) measure, for use in stroke trials. METHODS: Domains and items for the SS-QOL were developed from patient interviews. The SS-QOL, Short Form 36, Beck Depression Inventory, National Institutes of Health Stroke Scale, and Barthel Index were administered to patients 1 and 3 months after ischemic stroke. Items were eliminated with the use of standard psychometric criteria. Construct validity was assessed by comparing domain scores with similar domains of established measures. Domain responsiveness was assessed with standardized effect sizes. RESULTS: All 12 domains of the SS-QOL were unidimensional. In the final 49-item scale, all domains demonstrated excellent internal reliability (Cronbach's alpha values for each domain >/=0.73). Most domains were moderately correlated with similar domains of established outcome measures (r2 range, 0.3 to 0.5). Most domains were responsive to change (standardized effect sizes >0.4). One- and 3-month SS-QOL scores were associated with patients' self-report of HRQOL compared with before their stroke (P<0.001). CONCLUSIONS: The SS-QOL measures HRQOL, its primary underlying construct, in stroke patients. Preliminary results regarding the reliability, validity, and responsiveness of the SS-QOL are encouraging. Further studies in diverse stroke populations are needed.  相似文献   

18.
The aim of this study is to appraise the suitability of current quality of life (QOL) questionnaires for use in the field of Parkinson's disease (PD). Computerized bibliographic databases were screened for publications from 1960 to December 2006. Predefined selection criteria were used to identify QOL questionnaires in PD studies. Two investigators independently assessed and, subsequently, agreed on a set of multidimensional generic and PD-specific QOL questionnaires. Data were extracted concerning the internal structure, reliability, validity, and responsiveness of the included questionnaires. Sixteen-questionnaires were found, of which 14 questionnaires were included (six generic measures and eight PD-specific). In general, the psychometrics of all the questionnaires were adequately described. Sensitivity to change, however, has been reported for only a limited number of instruments. Almost all included questionnaires used QOL as a keyword, but only two questionnaires fitted the broad QOL definition used in this review. Considering the few "real " QOL questionnaires, we conclude that there is a strong need for such instruments.  相似文献   

19.
Background and purpose:  No study using a stroke-specific measure has been previously conducted to determine the profile of health-related quality of life (HRQOL) in Nigerian stroke patients. Such a study is pre-requisite to planning of patient-centered rehabilitative care aimed at maximizing HRQOL improvement. Our objectives were to develop and validate a stroke-specific HRQOL measure, and determine the profile of HRQOL using it.
Methods:  The HRQOL in stroke patients (HRQOLISP) questionnaire was developed and administered to 100 stroke patients and a control group of 100 age- and gender-matched healthy adults. The Stroke Levity Score (SLS) and modified Rankin Scale (mRS) were applied to measure stroke severity and disability respectively.
Results:  The HRQOLISP surpassed the Nunnaly's criterion for reliability and was able to discriminate between stroke (HRQOLsum = 73.5 ± 9.1) and normal subjects (HRQOLsum = 84.4 ± 6.9, P  = 0.002). It differentiated strokes of various severities in the physical dimension (physical, psychological, cognitive and social domains). SLS and mRS correlated only to the domains in the physical dimension.
Conclusion:  The HRQOLISP demonstrated good content, construct and discriminant validity and internal consistency reliability. Stroke had a multifaceted effect on HRQOL, which was more pronounced in the physical dimension.  相似文献   

20.
Objectives. Prospective studies using specific outcome measures for the treatment of complex regional pain syndromes (CRPS) using spinal cord stimulation are lacking in the literature. The current prospective study followed 19 patients with the objective of analyzing such patients using specific outcome measures including the McGill Pain Rating Index, the Sickness Impact Profile, Oswestry Disability, Beck Depression Inventory, and Visual Analog Scale Scores. Materials and Methods. Nineteen patients are reported as a subgroup enrolled at two centers participating in a multicenter study of efficacy/outcomes of spinal cord stimulation. These patients were specifically identified as having CRPS and followed as a separate group. Specific preimplant and postimplant tests to measure outcome were administered. Results. Statistically significant improvement in the Sickness Impact Profile physical and psychosocial subscales is documented. The McGill Pain Rating Index words chosen and sensory subscale also improved significantly as did Visual Analog Scale scores. The Beck Depression Inventory trended toward significant improvement. Conclusions. Patients with CRPS benefit significantly from the use of spinal cord stimulation, based on average follow-up of 7.9 months.  相似文献   

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