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1.

Background:

Aphasia, an acquired inability to understand and/or speak language, is a common repercussion of stroke that denigrates the quality of life (QOL) in the affected persons. Several languages in India experience the dearth of instruments to measure the QOL of persons with aphasia. Malayalam, the language spoken by more than 33 million people in Kerala, the southern state of India, is not an exception to this.

Objective:

This study aimed to adapt and validate the widely-used stroke-aphasia quality of life (SAQOL-39) scale to Malayalam.

Materials and Methods:

We required seven Malayalam-speaking Speech Language Pathologists (SLPs), hailing from different regions of Kerala, to examine the socio-cultural suitability of the original items in SAQOL-39 and indicate modifications, wherever necessary. Subsequently, the linguistic adaptation was performed through a forward-backward translation scheme. The socio-culturally and linguistically adapted Malayalam version was then administered on a group of 48 Malayalam-speaking persons with aphasia to examine the test-retest reliability, acceptability, as well as the internal consistency of the instrument.

Results:

The Malayalam SAQOL-39 scale showed high test-retest reliability (intraclass correlation coefficient, ICC = 0.91) as well as acceptability with minimal missing data (0.52%). Further, it yielded high internal consistency (Chronbach''s ∝ = 0.98) as well as item-to-total and inter-domain correlations.

Conclusions:

The Malayalam version of SAQOL-39 is the first socio-culturally and linguistically adapted tool to measure the QOL of persons with stroke-aphasia speaking this language. It may serve as a potential tool to measure the QOL of this population in both clinical practice and future research endeavors.  相似文献   

2.
Background: Economic considerations are increasingly important in all areas of health care because of the need to determine the value of new and existing treatments. A key component of the current economic evaluation framework is the measurement of health outcomes in a manner that permits comparability across clinical areas—often referred to as “generic” outcome measurement—and incorporates societal preferences. Preference-based health-related quality of life (HRQoL) instruments are widely used to collect such data.

Aims: To provide a research synthesis regarding the consideration and/or use of preference-based HRQoL instruments in the context of aphasia. A systematic search was conducted to identify aphasia-related publications that contained any of the leading preference-based instruments; in particular, the 15D, Assessment of Quality of Life (multiple variants), EQ-5D (three-level and five-level), Health Utilities Index (Mark 2 and Mark 3), Quality of Well-Being Scale Self-Administered, and/or SF-6D (SF-36 and SF-12 versions). In addition to providing an overview of how different measures have been used in aphasia research, a focus of the evaluation was to collate evidence for measurement properties and identify knowledge gaps, providing directions for further research. A secondary objective was to explore how preference-based measures have been discussed, broadly, in the aphasia literature. The latter objective originates from a desire to reflect the extent to which aphasia researchers have considered standard approaches to outcome measurement for the purposes of economic evaluation.

Main Contribution: Eight publications (from six studies) were identified; the three-level EQ-5D was used on four occasions, and the 15D and an “accessible” version of the three-level EQ-5D were used once. The key finding is that there have been no psychometric evaluations of preference-based HRQoL instruments in the context of aphasia. One paper explicitly discussed the challenge of using standardised, generic preference-based instruments with individuals with aphasia; researchers devised an accessible version of the EQ-5D, based on pictures rather than text (this remains unvalidated and is not an official EQ-5D instrument). The absence of any supportive evidence regarding the performance of preference-based instruments in the context of aphasia hampers the ability to assess the cost-effectiveness of treatments and interventions within the current economic evaluation framework.

Conclusions: There is a distinct lack of conceptual or empirical research regarding the appropriateness of current preference-based HRQoL instruments in the context of aphasia. Development and extensive validation of an accessible, generic preference-based HRQoL instrument appears to be an appropriate research direction.  相似文献   

3.

Background:

Stroke is a major detriment to the quality of life (QOL) in its victims. Several functional limitations following stroke contribute to the denigrated QOL in this population. Aphasia, a disturbance in the comprehension, processing, and/or expression of language, is a common consequence of stroke. Yet, in most Indian languages, including the national language (Hindi), there are no published tools to measure the QOL of persons with stroke-aphasia.

Objective:

The current study was carried out to adapt and validate a well-known tool to measure the QOL (i.e., Stroke-Aphasia Quality of Life-39; SAQOL-39) to Hindi.

Materials and Methods:

We presented the original (English) version of the SAQOL-39 to a group of six Hindi-speaking Speech Language Pathologists hailing from the central and northern regions of India to examine the sociocultural suitability of items and indicate modifications, if any. The linguistic adaptation was performed through a forward-backward translation scheme. The socioculturally and linguistically adapted (to Hindi) version was then administered on a group of 84 Hindi-speaking persons with aphasia to examine the acceptability, test-retest reliability as well as the internal consistency of the instrument.

Results:

The SAQOL-39 in Hindi exhibited high test-retest reliability (ICC = 0.9) as well as acceptability with minimal missing data. This instrument exhibited high internal consistency (Chronbach''s ∝ = 0.98) as well as the both item-to-total and inter-domain correlations.

Conclusions:

The socioculturally and linguistically adapted Hindi version of SAQOL-39 is a robust tool to measure the QOL of persons with stroke-aphasia. It may serve as an essential tool to measure the QOL in this population for both clinical and research purposes.  相似文献   

4.
Background: Although aphasia affects quality of life (QoL), the impact within specific domains (e.g., psychosocial, communication) is poorly understood. Moreover, the complex and multidimensional nature of QoL renders it difficult to measure accurately using a single global scale.

Aims: Using two recently developed QoL scales, the Stroke and Aphasia Quality of Life Scale‐39, (SAQOL; Hilari, Byng, Lamping, & Smith, 2003a Hilari, K., Byng, S., Lamping, D. L. and Smith, S. C. 2003a. Stroke and Quality of Life Scale‐39 (SAQOL‐39): Evaluation of acceptability, reliability and validity.. Stroke, 34: 19441950. [Crossref], [PubMed], [Web of Science ®] [Google Scholar]) and the American Speech Language Hearing Association's Quality of Communication Life Scale (QCL; Paul et al., 2004 Paul, D. R., Frattali, C. M., Holland, A. L., Thompson, C. K., Caperton, C. J. and Slater, S. C. 2004. Quality of Communication Life Scale, Rockville, MD: The American Speech‐Language‐Hearing Association.  [Google Scholar]), this study aimed to document the domains of QoL that were most affected for participants with aphasia compared to control participants, as well as to determine the relationship between the two scales, their sub‐domains, and linguistic variables in aphasia.

Methods & Procedures: The two scales were administered to a group of 19 participants with aphasia (14 male, 5 female), ages ranging from 27 to 79 years, and 19 age‐ and gender‐matched control participants. Various types and severity of aphasia were represented in the aphasia group. The performances of aphasia and control groups were compared, and correlation analyses examined the relationship between the two scales and their sub‐domains in the aphasia group only.

Outcomes & Results: Compared to control participants, QoL was lower in participants with aphasia, with the communication sub‐domain of SAQOL and socialisation/activities sub‐domain of QCL being the most affected areas of functioning. Between the two scales, the communication sub‐domain of SAQOL correlated with the socialisation/activities sub‐domain and the QCL mean. Moreover, linguistic variables correlated strongly with psychosocial, communication and socialisation/activities sub‐domains of QoL.

Conclusions: Measuring QoL using the SAQOL and the QCL captures different but equally important aspects of experiences of living with aphasia. When interpreted together, they provide a holistic picture of functioning in aphasia that includes broad overviews of QoL from the SAQOL and a finer‐grained analysis of communication impairments on QoL from the QCL.  相似文献   

5.
Objectives: For people with aphasia (PWA), attending an aphasia camp can result in increased confidence, social relationships, and greater participation in activities. Although much anecdotal evidence of the benefits of aphasia camps exists, systematic studies on outcomes from aphasia camp participation are lacking. The purpose of this pilot study was to examine the effect of attending the Alberta Aphasia Camp on quality of life for people with aphasia.

Methods: Nine PWA who attended the inaugural Alberta Aphasia Camp completed the Assessment for Living with Aphasia-2 before and after camp. A subset of their caregivers (n = 4) completed the Communicative Effectiveness Index, a rating scale evaluating their PWA’s communication, and were interviewed about their experiences and perceptions of camp participation.

Results: Significant changes were observed on total scores on the ALA-2, and in particular the Personal and Participation subtests. These improvements were corroborated by themes identified from interviews with caregivers.

Discussion: This study provides preliminary evidence that aphasia camp participation can result in improved outcomes for PWA across a range of domains. Aphasia camps provide a unique intervention for PWA and caregivers to experience therapeutic and recreational activities, respite and create social connections in a supported communication environment. Future studies should recruit a greater number of participants, employ control groups, and examine outcomes for caregivers.  相似文献   


6.
Background: Many factors that contribute to successful living with aphasia intersect with the benefits one can get from attending an aphasia group. Affiliated with Toastmasters International, Gavel Clubs (GCs) for people with aphasia (PWA) provide a range of communication activities that promote public speaking and leadership skills. The constructs of communication confidence and quality of communication life (QCL) were introduced over a decade ago but have not been widely investigated.

Aims: This study aims to investigate the association between weekly participation in GC public speaking activities for PWA and the constructs of QCL and communication confidence. In addition, the study aims to explore the association between the severity of aphasia, QCL and communication confidence.

Methods & Procedures: Eight members of a GC for PWA, who attended 31–33 weekly GC meetings per year between 2012 and 2016, participated in assessments of their QCL (using the ASHA Quality of Communication Life (ASHA QCL)), communication confidence (using the Communication Confidence Rating Scale for Aphasia (CCRSA)), and aphasia severity (using the Western Aphasia Battery-Revised (WAB-R)). A link was sought between severity of aphasia and the constructs of QCL and communication confidence.

Outcomes & Results: QCL improved significantly over four years of participation in the GC (= 2.103, = 8, = .035, = .74). Communication confidence also improved significantly (= 1.973, = .049, = .70). No associations were found between the two scales or between the scales and severity of aphasia.

Conclusions: Weekly participation in GC group activities was associated with improved QCL, as measured by the ASHA QCL, and improved communication confidence as measured by the CCRSA. Decision-making (measured by the CCRSA) and the Roles and Responsibilities domain (in the ASHA QCL) also improved. More research is needed to verify these findings using a study design that includes a control group, to identify the links between the various psychosocial aspects at play in the life of PWA and to conceptualise how the gains achieved with GC participation can be applied more broadly to successful living with aphasia.  相似文献   


7.
成年癫痫患者生活质量-31量表的信度和效度   总被引:25,自引:1,他引:24  
目的 考核QOLIE-31评价成年成年癫痫患生活质量的信度和效度。方法 采用随机抽样调查方法,用QOLIE-31量表信函调查成年癫痫患52例。计算该量表的重测信度。内部一致性信度和构建效应。结果 QOLIE-31量表具有较好的信度和效度。结论 QOLIE-31量表是一份较好的用于测量我国癫痫病人生活质量的量表。  相似文献   

8.
Petra Links  Joost Hurkmans 《Aphasiology》2013,27(11):1303-1325
Background: Many aphasic speakers have problems producing verbs at both the word and the sentence level. A treatment programme called ACTION (Bastiaanse, Bunge, & Perk, 2004 Bastiaanse, R., Bunge, F. and Perk, Y. 2004. Action: Ein Therapieprogramm mit Verben auf Wort-. und Satzebene, Hofheim, , Germany: NAT-Verlag.  [Google Scholar]; Bastiaanse, Jonkers, Quak, & Varela Put, 1997 Bastiaanse, R., Jonkers, R., Ch, Quak and Varela Put, M. 1997. Werkwoordproductie op Woord- en Zinsniveau (Verb production at the word and sentence level), Lisse, , The Netherlands: Swets Test Publishers.  [Google Scholar]) has been developed to train verb production of both fluent and non-fluent aphasic speakers. It consists of four levels: single verbs, filling in infinitives, filling in finite verbs, and sentence construction. For the present study the efficacy of the programme for agrammatic speakers with Broca's aphasia was tested.

Aims: The aim of the study was to measure the effects of treatment with ACTION on non-trained infinitives and finite verbs, and to analyse the generalisation effects on spontaneous speech and verbal communication in daily life.

Methods & Procedure: ACTION was used to train 11 agrammatic patients with Broca's aphasia, following the multiple baseline across behaviours design. The patients were tested weekly on untreated items. Two follow-up assessments were done, 1 and 3 months post-treatment. Generalisation to related and unrelated materials was measured with subtasks of the Aachen Aphasia Test (AAT). Spontaneous speech was analysed, and verbal communication was measured before and after treatment and 3 months post-treatment by the Amsterdam-Nijmegen Everyday Language Test (ANELT).

Outcomes & Results: There was improvement on the untrained infinitives and finite verbs. The improvement on infinitives was relatively minor; finite verbs, which were more impaired than the infinitives prior to treatment, improved up to the level of the infinitives. The improvement generalised to the related tasks of the AAT, but not to the unrelated task; verbal communication improved significantly. This improvement was reflected in relevant variables of spontaneous speech (mean length of utterances, proportion of finite verbs and verb diversity), but not in an unrelated variable (diversity of nouns).

Conclusions: Treatment with ACTION resulted in better production of finite verbs. The effects generalised to spontaneous speech. Most importantly, it was shown that communication in daily life improved.  相似文献   

9.
Background and purpose:  Aphasia is an important post-stroke sequela. We estimated the prevalence and main determinants of post-stroke aphasia in the prefecture of Arcadia, Greece.
Method:  Prospective population-based study of Arcadia residents diagnosed with first ever stroke. within a 2 year period. Associations of aphasia with potential predictors were analysed by logistic regression in: (i) the entire cohort and (ii) the sub-cohort of patients who were alive 28 days post-stroke. Multivariate regression models were adjusted for left hemispheric stroke localization and modified Rankin Scale 28 days post-stroke (MRS-1mo).
Results:  Of 555 subjects, 126 (22.7%) suffered from aphasia. When only the 405 survivors were considered, 77 (19.0%) suffered from aphasia. In adjusted multivariate models of the entire cohort, factors conferring significantly higher risk for aphasia included female gender, diabetes mellitus (borderline significance) and heart disease. In adjusted multivariate models of survivors, only diabetes was associated with significantly higher risk for aphasia.
Conclusions:  Female gender, diabetes and heart disease were independent prospective predictors of aphasia. The study offers a quantitative estimate of the public health problem of post-stroke aphasia in Greece and suggests that the role of diabetes in post-stroke aphasia may be more important than previously appreciated.  相似文献   

10.
OBJECTIVE: To develop a Quality of Life questionnaire rated by professionals that can be used for people with dementia in different stages of the disease, living in residential settings. METHOD: Development was performed in two phases: item generation and pilot testing, and a field survey to evaluate the psychometric properties. For unidimensionality we used a non-parametric model from item response theory: the Mokken scaling model, and computed the corresponding scalability coefficients, using a theory driven strategy. RESULTS: The pilot survey resulted in a list of 49 items. The field survey was performed in a sample of 238 people with dementia residing in ten nursing homes. The scalability of the subscales positive affect, negative affect, restless tense behavior, and social relations is strong (0.50 < H < 0.63); for care relationship, positive self image, feeling at home, and having something to do, scalability was moderate (0.40 < H < 0.49), and for social isolation it was weak (H = 0.34). The reliability coefficient Rho (under assumption of double monotonicity) varied from 0.60 for social isolation to 0.90 for positive affect (Cronbach's alpha varied from 0.59 to 0.89). Twenty-one of 40 items are suited for people with very severe dementia. CONCLUSION: The QUALIDEM is an easy to administer and sufficiently reliable rating scale that provides a QOL profile of persons with dementia in residential settings. The QUALIDEM can be used for evaluation as well as for research and practice innovation.  相似文献   

11.
We report on the development and results of preliminary psychometric testing of a disease specific health-related quality of life (HRQoL) scale intended for use in individuals diagnosed with idiopathic Parkinson's disease (PD). Results from an initial qualitative study provided content for item development and scale construction of the Parkinson's disease quality of life scale (PDQUALIF). The 33-item instrument includes seven domains: social/role function, self-image/sexuality, sleep, outlook, physical function, independence, and urinary function, plus one item of Global HRQoL. Initial psychometric testing of the instrument was conducted in 233 outpatient clinic attendees with physician-confirmed idiopathic PD. Factor structure, reliability and validity of the scale have been established in this cross-sectional study. Continuing development of the PDQUALIF will be directed at enhancing the psychometric properties, establishing responsiveness and determining appropriateness in culturally diverse samples.  相似文献   

12.
Abstract

Objective. This study documented the incidence, pattern and impact of depression on QoL of stroke-survivors within 6-month post-stroke. Methods. This study involved 65 stroke survivors consecutively recruited at ictus from a tertiary health institution in Nigeria. The National Institute of Health Stroke-Scale, Stroke-Specific Quality-of-Life (SSQOL), international classification of diseases (tenth edition) and Center for Epidemiological Scale-Depression (CES-D) were administered at ictus to assess stroke-severity, QoL and depression respectively. The SSQOL, ICD-10 and CES-D were subsequently administered every other week for 6 months. Data were treated using Spearman's correlation coefficient, Mann–Whitney U-test and multivariable stepwise linear regression analysis (P=0.05). Results. Participants were age 58.1±15.7 years; 38 and 27 hemorrhagic and ischaemic stroke respectively. Twenty-six (40%) and 60.0% had moderate and severe stroke, respectively. The QoL at post-stroke periods were significantly influenced (P<0.05) by depression, age, marital status, spouse supports, stroke-severity, and educational-attainment. Depression determined (P<0.05) poor QoL in stroke-survivors. Co-morbidity with stroke severity was a determinant (P<0.05) of poor QoL and death. The haemorrhagic stroke survivors had significantly higher (P<0.05) QoL at post-stroke periods. Conclusion. Depression is associated with stroke. It is common within the first 6 months post-stroke and has negative impact on quality of life of stroke-survivors.  相似文献   

13.
Background: Although several studies have examined working memory in people with aphasia, there is little information about the psychometric properties of tasks used to measure working memory in this population.

Aims: The aims of this study were (1) to examine the construct validity, internal consistency, and test-retest reliability of several working memory tasks and (2) to determine which tasks were feasible to use with people with a wide range of aphasia severities.

Methods & Procedures: In experiment one, non-brain-damaged adults (n = 47) completed a set of working memory tasks that were designed for use with people with aphasia. The tasks included 1-back, 2-back, listening span and forward and backward versions of picture span and square span. Construct validity was assessed by correlating performance on the new tasks with a composite score based on three well-established working memory tasks with known psychometric properties. Ten older adults completed the testing battery twice to measure test-retest reliability. Internal consistency was estimated using split-half reliability. In experiment two, people with aphasia (n = 12) completed the new working memory tasks.

Outcomes & Results: The picture span tasks demonstrated acceptable test-retest reliability, internal consistency, and construct validity. Controls showed ceiling effects on 1-back and people with aphasia showed floor effects on listening span. Both the square span tasks and n-back showed poor internal consistency for people with aphasia and age-matched controls.

Conclusions: A composite score based on the forward and backward versions of picture span provides a measure of verbal working memory with acceptable construct validity, internal consistency and test-retest reliability and can be completed by non-brain-damaged adults and people with aphasia.  相似文献   

14.
15.
16.
17.
Background: Assessment and diagnosis of post-stroke depression (PSD) among patients with aphasia presents unique challenges. A gold standard assessment of PSD among this population has yet to be identified.

Objectives: The first aim was to investigate the association between two depression scales developed for assessing depressive symptoms among patients with aphasia. The second aim was to evaluate the relation between these scales and a measure of perceived stress.

Method: Twenty-five (16 male; 9 female) individuals with history of left hemisphere cerebrovascular accident (CVA) were assessed for depression and perceived stress using the Stroke Aphasic Depression Questionnaire-10 (SADQ-10), the Aphasia Depression Rating Scale (ADRS), and the Perceived Stress Scale (PSS).

Results: SADQ-10 and ADRS ratings were strongly correlated with each other (r = 0.708, p < 0.001). SADQ-10 ratings were strongly correlated with PSS ratings (r = 0.620, p = 0.003), while ADRS ratings were moderately correlated (r = 0.492, p = 0.027). Item analysis of each scale identified items which increased both inter-scale correlation and intra-scale consistency when excluded.

Conclusions: The SADQ-10 and ADRS appear to be acceptable measures of depressive symptoms in aphasia patients. Measurements of perceived stress may also be an important factor in assessment of depressive symptoms.  相似文献   


18.
Background: A quality of life approach to managing communication and neurodegenerative conditions is increasingly encouraged by professional bodies and healthcare models. Clinical services for primary progressive aphasia (PPA) continue to expand and the research base continues to grow; however, there is little research specifically investigating quality of life in PPA.

Aims: This critical review aimed to determine the available knowledge about quality of life in PPA and gaps in that knowledge, and to consider how PPA researchers might best address those gaps.

Main contribution: Two unpublished single case series studies and one published case study were identified that directly investigated aspects of quality of life in PPA. These suggested that quality of life is heterogenous and determined by a range of factors, supporting a person-centred approach to care. The current literature also includes five accounts of living with PPA authored by individuals with PPA or their carers, discussing factors that influenced these individuals’ quality of life. Seventeen empirical investigations of mood were identified, suggesting that approximately 40% of individuals with PPA develop depression at some point. Finally, several recent studies have noted the importance of promoting quality of life in PPA and/or have utilised quality of life outcome measures; however, most lack a clear conceptualisation of the construct of quality of life, and how this construct is related to the instruments and methods chosen to measure it.

Conclusions: Literature on quality of life in PPA is beginning to emerge, although little is available in indexed databases. More research is needed that better conceptualises the construct of quality of life, critically appraises the way quality of life is assessed in PPA, builds on findings from the current small samples, and involves individuals with PPA in formulating research directions and research tools that will enable discussion about their quality of life.  相似文献   


19.
Background: The Assessment of Living with Aphasia (ALA) is a pictographic, self-report measure of aphasia-related quality of life (QoL). It has yet to be used in the Singapore population or adapted to other languages.

Aims: To examine the reliability and validity of the ALA and develop a Mandarin Chinese adaptation, the ALA-C, in the Singapore context.

Methods & procedures: Linguistic validation of the ALA was conducted to derive the ALA-C. People with aphasia (PWA) who were at least 6 months post-onset underwent the ALA/ALA-C and a series of reference measures in their dominant language (English/Mandarin). Test–retest reliability was evaluated using intra-class correlations and internal consistency using Cronbach’s alpha. Eight reference measures were administered to assess construct validity.

Outcomes & results: Sixty-six PWA were recruited to the study. Both the ALA and ALA-C showed excellent internal consistency (α = 0.97/0.96) and test–retest reliability (intraclass correlation = 0.97/0.98), and acceptable convergent (= 0.63–0.83 and 0.70–0.83 respectively) and discriminant (r = 0.45–0.60 and 0.39–0.53, respectively) validity.

Conclusions: Both ALA and ALA-C demonstrated excellent reliability and good validity. Further research is warranted to examine use by more practicing clinicians and with more participants of varying degrees of aphasia severity to enable additional investigation of its psychometric properties.  相似文献   


20.
Background: Cross-cultural adaptation of health-related quality of life (HRQL) scales is useful as it allows comparisons of therapy outcomes across different countries to be drawn.

Aims: To adapt the English Stroke and Aphasia Quality of Life—39 item generic stroke scale (SAQOL-39g) into Dutch. To investigate the psychometric properties (acceptability, internal consistency, test–retest reliability and construct validity) of the Dutch version (SAQOL-39NL).

Methods & Procedures: Established guidelines for cross-cultural adaptation of self-report measures were followed. Individuals with chronic aphasia were recruited from six centres in The Netherlands. Participants completed the SAQOL-39NL and a visual analogue scale on HRQL in an interview format with an aphasia specialist speech and language therapist.

Outcomes & Results: The cross cultural adaptation resulted in a consensus version of the SAQOL-39NL, which participants (n = 13) felt was informative and of value in assessing the impact of stroke on their lives. The SAQOL-39NL was acceptable (no missing data; no floor or ceiling effects) to people with chronic aphasia (n = 47). Internal consistency (Cronbach’s alpha = 0.89 for scale; 0.84–0.91 for domains) and test–retest reliability were excellent (ICC = 0.90 for scale, 0.70–0.93 for domains). Internal validity (moderate intercorrelations between domains) and convergent validity (r = 0.45) were good.

Conclusions: The SAQOL-39NL is a psychometrically sound measure of HRQL for Dutch speaking people with aphasia. As is common with new measures, its psychometric properties need to be evaluated further; and its appropriateness as a clinical outcome measure needs to be determined. Yet, the SAQOL-39NL is a promising new measure for use in clinical practice, audit and research.  相似文献   


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