Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Helbredsrelateret livskvalitet efter apopleks: Validering og anvendelse af SSQOL-DK, et diagnosespecifikt instrument til måling af helbredsrelateret livskvalitet blandt danske apopleksipatienter
Nordic Council of Ministers, Nordic School of Public Health NHV.
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 [en]
public health, health related quality of life, stroke, transient ischemic attack, transcultural adaptation, psychometrics.
Keyword [da]
folkesundhed, helbredsrelateret livskvalitet, apopleksi, transcerebral iskæmi, transkulturel adaptation, psykometri
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3500ISBN: 978-91-85721-36-8 (print)OAI: oai:DiVA.org:norden-3500DiVA: diva2:760449
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
List of papers
1. Responsiveness and sensitivity of the Stroke Specific Quality of Life Scale Danish version.
Open this publication in new window or tab >>Responsiveness and sensitivity of the Stroke Specific Quality of Life Scale Danish version.
Show others...
2011 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 25-26, 2425-33 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: To test responsiveness and sensitivity to change of the Stroke Specific Quality of Life Scale Danish version (SSQOL-DK) scores in patients following stroke.

METHODS: A follow-up study of 150 patients with first-ever stroke was used. Questionnaires on quality of life, fatigue, depression, and functional level were completed. Direction of change was categorised as deterioration, no change or improvement. Proportion of concordant classification with external criteria was assessed. Associations between differences in SSQOL-DK domains and the other instruments were estimated using Spearman's rank order correlation coefficients. Paired t-test was used to assess change in the SSQOL-DK domains in patients affected in that domain. Effect size and standardised response mean (SRM) were used to express domain responsiveness.

RESULTS: SSQOL-DK classified concordantly in 42.2 to 58.1%, and misclassified from zero to 31.3%. Changes in SSQOL-DK and in the corresponding measures correlated from (r(s)) 0.08 to -0.58. Fatigue and domain energy in SSQOL-DK were negatively correlated. Effect size ranged from -0.03 to -0.53, SRM from -0.02 to -0.56 reflecting mild-to-moderate responsiveness in eight out of 12 domains.

CONCLUSION: SSQOL-DK is mildly to moderately responsive and sensitive and can be used for descriptive purposes over time in groups of patients with mild stroke.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3496 (URN)10.3109/09638288.2011.573901 (DOI)21524187 (PubMedID)
Available from: 2014-10-30 Created: 2014-10-30 Last updated: 2014-11-04Bibliographically approved
2. Health-related quality of life after stroke: reliability of proxy responses.
Open this publication in new window or tab >>Health-related quality of life after stroke: reliability of proxy responses.
2009 (English)In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 18, no 2, 103-18 p.Article in journal (Refereed) Published
Abstract [en]

A Danish version of the Stroke-Specific Quality of Life Scale (SSQOL-DK) has been developed for self-reporting; it contains 12 physical and psychosocial domains. The purpose of this study was (a) to assess the reliability of the proxy version of the SSQOL-DK and (b) to evaluate the influence of frequency of proxy contact on agreement. In all, 143 patients completed the SSQOL-DK 1 to 5 years post-stroke. A patient chosen proxy completed a proxy version of the same questionnaire. The proxy version showed satisfactory internal consistency (Cronbach's alpha = .85-.95). Agreement was generally high. Proxies rated the amount of trouble significantly smaller (higher score) than the patients only in the domain Social Roles. The amount of trouble in the domain Family Roles received significantly higher ratings from noncohabitant proxies when compared with patients (lower score). The proxy version of the SSQOL-DK appears to be reliable for use with stroke patients up to a few years following a stroke.

Keyword
stroke, health-related quality of life, proxy responses, SSQOL
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3497 (URN)10.1177/1054773809334912 (DOI)19377041 (PubMedID)
Available from: 2014-10-30 Created: 2014-10-30 Last updated: 2014-11-04Bibliographically approved
3. Health-related quality of life among Danish patients 3 and 12 months after TIA or mild stroke.
Open this publication in new window or tab >>Health-related quality of life among Danish patients 3 and 12 months after TIA or mild stroke.
2010 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 24, no 2, 211-8 p.Article in journal (Refereed) Published
Abstract [en]

AIM: This paper aimed to describe health related quality of life three and 12 months after mild stroke or transient ischemic attack, TIA, to describe the perceived changes from pre to post stroke status and to examine sociodemographic determinants for health related quality of life.

METHODS: 105 patients with mild stroke or TIA delivered self reported data on health related quality of life using the Stroke Specific Quality of Life Scale Danish Version, SSQOL-DK. The main outcome was perceived change in over all quality of life from pre to post stroke status. Non-parametric tests were used to examine change over time and differences between groupings of gender, age and life conditions. Logistic regression was used to model the change of all over quality of life changed at 12 months compared to pre stroke status.

RESULTS: Fifty seven percent (57%) of the patients felt that their pre stroke status concerning quality of life was regained. Those that rated all over quality of life deteriorated 12 months post stroke were more often working (48.9% vs. 31.7%), fewer had a diagnosis of TIA (13.3% vs. 30%), functional level was lower and the consumption of antidepressive medication was more frequent. 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 health related quality of life deteriorated after stroke.

CONCLUSION: Rehabilitation efforts should include employment alternatives of a less demanding nature for male patients.

Keyword
health-related quality of life, stroke, SSQOL-DK, TIA
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3498 (URN)10.1111/j.1471-6712.2009.00705.x (DOI)20230517 (PubMedID)
Available from: 2014-10-30 Created: 2014-10-30 Last updated: 2014-11-04Bibliographically approved
4. Stroke Specific Quality of Life Scale: Danish adaptation and a pilot study for testing psychometric properties.
Open this publication in new window or tab >>Stroke Specific Quality of Life Scale: Danish adaptation and a pilot study for testing psychometric properties.
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.

Keyword
stroke, quality of life, measurement, transcultural adaptation, nursing
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3499 (URN)10.1111/j.1471-6712.2005.00323.x (DOI)15877639 (PubMedID)
Available from: 2014-11-04 Created: 2014-11-04 Last updated: 2014-11-04Bibliographically approved
5. Validation of the Stroke Specific Quality of Life Scale (SS-QOL): test of reliability and validity of the Danish version (SS-QOL-DK).
Open this publication in new window or tab >>Validation of the Stroke Specific Quality of Life Scale (SS-QOL): test of reliability and validity of the Danish version (SS-QOL-DK).
2007 (English)In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 21, no 7, 620-7 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To test the reliability and validity of the Danish version of the Stroke Specific Quality of Life Scale version 2.0 (SS-QOL-DK), an instrument for evaluation of health-related quality of life.

DESIGN: A correlational study.

SETTING: A stroke unit that provides acute care and rehabilitation for stroke patients in Frederiksborg County, Denmark.

SUBJECTS: One hundred and fifty-two stroke survivors participated; 24 of these performed test-retest.

INTERVENTION: Questionnaires were sent out and returned by mail. A subsequent telephone interview assessed functional level and missing items.

MAIN OUTCOME MEASURES: Test-retest was measured using Spearman's r, internal consistency was estimated using Cronbach's alpha, and evaluation of floor and ceiling values in proportion of minimum and maximum scores. Construct validity was assessed by comparing patients' scores on the SS-QOL-DK with those obtained by other test methods: Beck's Depression Index, the General Health Survey Short Form 36 (SF-36), the Barthel Index and the National Institutes of Health Stroke Scale, evaluating shared variance using coefficient of determination, r2. Comparing groups with known scores assessed known-group validity. Convergent and discriminant validity were assessed.

RESULTS: Test-retest of SS-QOL-DK showed excellent stability, Spearman's r = 0.65-0.99. Internal consistency for all domains showed Cronbach's alpha = 0.81-0.94. Missing items rate was 1.0%. Most SS-QOL-DK domains showed moderately shared variance with similar domains of other test methods, r2 = 0.03-0.62. Groups with known differences showed statistically significant difference in scores. Item-to-scale correlation coefficients of 0.37-0.88 supported convergent validity.

CONCLUSIONS: SS-QOL-DK is a reliable and valid instrument for measuring self-reported health-related quality of life on group level among people with mild to moderate stroke.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3495 (URN)10.1177/0269215507075504 (DOI)17702704 (PubMedID)
Available from: 2014-10-30 Created: 2014-10-30 Last updated: 2014-11-04Bibliographically approved

Open Access in DiVA

NHV Report 2008:5(749 kB)503 downloads
File information
File name FULLTEXT01.pdfFile size 749 kBChecksum SHA-512
d3ebeb5938e903ac4c2ba0387b276ac29073b36588aa461cf27286d49b628484f1bd9500a760f429a2c141ab2806c40e03e51870898a84e5d2001a026a1f5b27
Type fulltextMimetype application/pdf

By organisation
Nordic School of Public Health NHV
Medical and Health Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 503 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Total: 277 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf