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Stroke Specific Quality of Life Scale: Danish adaptation and a pilot study for testing psychometric properties.
Nordic Council of Ministers, Nordic School of Public Health NHV.
Nordic Council of Ministers, Nordic School of Public Health NHV.
2005 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 19, no 2, 140-7 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND AND PURPOSE: Stroke has an effect on many aspects of quality of life (QoL) and therefore it is important to measure the magnitude of the impact. Items in the American version of the Stroke Specific Quality of Life (SS-QoL) Scale are developed with help from patients with stroke and include even language impairments.

AIMS: To translate and culturally adapt the American SS-QoL Scale, version 2.0, a stroke-specific instrument measuring health-related QoL, into a Danish version, and to perform a pilot testing of the psychometric properties of the instrument.

METHODS: The guidelines recommended by Guillemin et al. (J Clin Epidemiol, 46, 1993, 1417) were followed including two independent forward and one back translation, inclusion of laymen, here patients with stroke and their spouses, pretest, and examining selected items with a probing technique. Four couples were included in the pretest, 14 in the pilot study. The patients for pretest and pilot study were selected strategically with regard to interest for participation, experience as stroke survivors, sufficient capacity of language perception and cohabitant status.

RESULTS: In the Danish version instructions were made more distinct and formal than in the original American version. Explanatory examples within the items were excluded. One new item adjusted for Danish conditions replaced one in the original version, and the response categories concerning personality were adjusted for cultural differences. The pilot study resulted in a more explicit formulation of the instructions to mark each item only once and on the same line as the item.

CONCLUSIONS: A Danish version of SS-QoL version 2.0 has been developed and content as well as format has proved relevant and acceptable to patients with stroke including those with impaired language production. The next step is testing the psychometric properties of the instrument.

Place, publisher, year, edition, pages
2005. Vol. 19, no 2, 140-7 p.
Keyword [en]
stroke, quality of life, measurement, transcultural adaptation, nursing
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3499DOI: 10.1111/j.1471-6712.2005.00323.xPubMedID: 15877639OAI: oai:DiVA.org:norden-3499DiVA: diva2:760447
Available from: 2014-11-04 Created: 2014-11-04 Last updated: 2014-11-04Bibliographically approved
In thesis
1. Helbredsrelateret livskvalitet efter apopleks: Validering og anvendelse af SSQOL-DK, et diagnosespecifikt instrument til måling af helbredsrelateret livskvalitet blandt danske apopleksipatienter
Open this publication in new window or tab >>Helbredsrelateret livskvalitet efter apopleks: Validering og anvendelse af SSQOL-DK, et diagnosespecifikt instrument til måling af helbredsrelateret livskvalitet blandt danske apopleksipatienter
2008 (Danish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [da]

Sammenfatning Baggrund og formål: Apopleksisygdommen er ansvarlig for flest tilfælde af invalidering blandt voksne i eget hjem. I Danmark alene lever godt 50.000 mennesker med følgerne efter apopleksi. En følge kan være reduceret evne til at kommunikere, afasi. Forebyggelse kan reducere antallet af nye tilfælde og følgerne efter sygdommen. Livskvalitet ved kronisk sygdom har voksende bevågenhed. Rehabilitering medvirker til at patienten kan blive fysisk, psykisk og socialt fungerende på et niveau, men sygdommens indvirken på oplevelsen af helbredsrelateret livskvalitet er i Danmark ikke undersøgt med sygdomsspecifikke instrumenter. Patienter med afasi udelukkes som regel fra undersøgelser, der kræver intakt tale og forståelse. Afhandlingens overordnede mål er at tilvejebringe et instrument, som kan anvendes til at måle helbredsrelateret livskvalitet efter apopleksi inkl. afasi. Metode og materiale: Afhandlingen har en kvantitativ tilgang. Et nordamerikansk instrument, Stroke Specific Quality of Life Scale, version 2.0, SSQOL © (copyright Linda S. Williams), er blevet oversat og kulturelt bearbejdet til dansk i overensstemmelse med anerkendt systematik i studie I. Instrumentet dækker med 49 items 12 domæner med fysisk, socialt og mentalt fokus samt 13 items, der dækker en vurdering af domænerne og livskvaliteten sammenlignet med før apopleksien. Instrumentets psykometriske egenskaber er blevet testet ved hjælp af tre studiepopulationer rekrutteret dels retrospektivt, dels konsekutivt. I studie II blev reliabilitet og validitet undersøgt, og i studie III responsivitet og sensitivitet. Afprøvningerne er foretaget med referenceformularer som eksterne kriterier i form af etablerede generiske skalaer. I studie IV er afprøvet en proxy-version tiltænkt patienter, som er ude af stand til selv at udfylde skemaet eller som ikke er i stand til at kommunikere tilstrækkeligt. Afprøvningen blev udført af en nærtstående udpeget af patienten. I studie V blev en gruppe let ramte patienter beskrevet, og variabler med betydningsfuld sammenhæng med oplevelsen af forringet helbredsrelateret livskvalitet blev undersøgt. Data er blevet testet ved hjælp af gennemsnit og standarddeviationer, median og range, proportioner, korrelationer og logistisk regression. Resultater: Den danske version af SSQOL, SSQOL-DK, har god face- og indholdsvaliditet. Det udfyldes på 10-20 minutter. Stabilitet, undersøgt med test-retest metode, viste korrelationer i området rs 0.65-0.99. Intern konsistens undersøgt med Cronbach’s alfa viste værdier i områderne 0.81-0.94 i studie II, 0.75-0.96 i studie III og 0.64-0.87 i studie V. Der blev set en ceiling effekt, 24-52%, men beskeden floor effekt. Begrebsvaliditet viste moderat delte varianser med de eksterne kriterier, r2 0.03-0.62. Konvergent validitet var (r) > 0.40 med undtagelse af et enkelt item. SSQOL-DK var i stand til at klassificere retning af ændring i livskvalitet over tid i overensstemmelse med eksterne kriterier i 43-58 % af tilfældene. Proxy-versionen viste god overensstemmelse mellem patient- og proxy data. I en gruppe af let ramte patienter med apopleksi og transcerebral iskæmi, TCI, et år efter sygdommen vurderede 57 % deres livskvalitet som uændret i forhold til før apopleksien. Det mandlige køn (OR 3.77), erhvervsaktivitet (OR 2.84), og lavere scores på domænerne Mood og Work ved tre måneder var covariater, som var signifikant relateret til sandsynligheden for at vurdere livskvaliteten forringet efter sygdommen. Konklusion: Der foreligger nu et dansksproget instrument, SSQOL-DK, som har demonstreret tilfredsstillende reliabilitet og validitet, og som kan anvendes på gruppeniveau til dansktalende patienter med let til moderat apopleksi. Apopleksipatienten med større kommunikationsproblemer har dog stadig begrænsede muligheder med dette instrument, idet de foreliggende resultater fra proxy-afprøvningen fordrer yderligere undersøgelse af datas validitet

Abstract [en]

Abstract Background and aim: Stroke is most frequently the cause of adult disability. In Denmark more than 50.000 people suffer from the sequels of stroke. One of them may be aphasia, i.e. reduced ability to communicate. Primary and secondary prevention may reduce the incidence and the severity of stroke. The interest in quality of life with a chronic disease is increasing. Rehabilitation efforts are targeted for physical, mental and social function but the impact on health related quality of life after stroke has not been studied with stroke specific instruments. Aphasic patients are normally excluded from studies where communicative skills are required. The aim of this thesis is to develop an instrument suitable for measuring health related quality of life after stroke. Methods and material: The design of the thesis is quantitative. In study I Stroke Specific Quality of Life Scale, version 2.0, SSQOL © (copyright Linda S. Williams), an American instrument recently developed, was translated and culturally adapted to Danish according to established guidelines. With 49 items SSQOL covers 12 domains comprising physical and mental issues. Thirteen items covers an appraisal of each domain compared to pre stroke status and overall quality of life. Psychometric properties was examined by studying three samples of stroke survivors. Study II and III examined reliability, validity and responsiveness. Established generic scales were used as external criteria. Study IV tested a proxy-version meant for stroke patients with language impairment or patients who are unable to fill in a questionnaire. The patients chose the proxies. Study V provided health related quality of life in a group of mildly affected patients after stroke or transient ischemic attack, TIA. Significant covariates with deteriorated health related quality of life were studied. Data were analyzed with mean and standard deviations, median and range, proportions correlations and logistic regression. Results: The Danish version of SSQOL, SSQOL-DK, showed good face- and content validity. It can be completed in less than 25 minutes. Test-retest showed correlations rs 0.65-0.99. Internal consistency showed Cronbach’s alpha from 0.81-0.94 in study II, 0.75-0.96 in study III and 0.64-0.87 in study V. Ceiling effect was 24-52%, floor-effect was modest. Construct validity showed shared variance with external criteria, r2 0.03-0.62. Convergent validity showed (r) >0.40 for 48 out of 49 items. SSQOL-DK classified direction of change in over all quality of life concordantly from 43-58% with external criteria. The agreement between patient- and proxy data was good. Fifty seven (57) percent of mildly affected patients after stroke or TIA rated their overall quality of life unchanged one year after stroke compared to pre stroke status. In the regression model male sex OR 3.77), working outside home (OR 2.84), and less than 5.00 (maximum score) on the domains Mood and Work/productivity at three months were significant predictors for rating over all quality of life deteriorated at 12 months. Conclusion: The SSQOL-DK has demonstrated satisfactory reliability and validity and can be used on group level measuring health related quality of life among Danish survivors after mild to moderate stroke and TIA. Stroke survivors with severe communication problems are still limited as validity of the proxy data should be further tested

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden, 2008. 84 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2008:5
Keyword
public health, health related quality of life, stroke, transient ischemic attack, transcultural adaptation, psychometrics., folkesundhed, helbredsrelateret livskvalitet, apopleksi, transcerebral iskæmi, transkulturel adaptation, psykometri
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3500 (URN)978-91-85721-36-8 (ISBN)
Public defence
2008-09-01, Nordic School of Public Health NHV, Göteborg, Sweden, 08:53 (Danish)
Opponent
Supervisors
Available from: 2014-11-04 Created: 2014-11-04 Last updated: 2014-11-04Bibliographically approved

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