Translating Health Status Questionnaires and Evaluating Their Quality

Bullinger, Monika; Alonso, Jordi; Apolone, Giovanni; Leplège, Alain; Sullivan, Marianne; Wood-Dauphinée, Sharon; Gandek, Barbara; Wagner, Anita K.; Aaronson, Neil K.; Bech, Per; Fukuhara, Shunichi; Kaasa, Stein; Ware, John E.

doi:10.1016/s0895-4356(98)00082-1

Cited by 784 publications

(378 citation statements)

References 17 publications

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“…If your family member died during the ICU stay, please answer the following questions (11)(12)(13). If your family member did not die, please skip to question 14.…”

Section: Process Of Making Decisionsmentioning

confidence: 99%

“…This approach is exemplified by the International Quality of Life Assessment project, which produced cross-cultural adaptations of the Short Form questionnaire-36 items (SF-36). 13 By showing that minimum standards (e.g. application of recognised criterion values, replication of original factor structures and tests of discriminant validity) are met across a range of cross-cultural adaptations, and that performance in a new adaptation is similar to that of the original version, one can have greater confidence that the instrument can be considered to have international applicability.…”

mentioning

confidence: 99%

“…application of recognised criterion values, replication of original factor structures and tests of discriminant validity) are met across a range of cross-cultural adaptations, and that performance in a new adaptation is similar to that of the original version, one can have greater confidence that the instrument can be considered to have international applicability. 13 The SF-36 has been established as a valid measure for use in the UK following cross-cultural validation and extensive psychometric testing 14,15 and population norms have been derived from large cohorts. 16 Cross-cultural validation of the FS-ICU has been conducted in North America 11 and Switzerland 17 but has not been undertaken in the UK.…”

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confidence: 99%

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Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families’ satisfaction with adult critical care services in the NHS

Wright

Walmsley

Harvey

et al. 2015

Health Serv Deliv Res

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BackgroundTo improve care it is necessary to feed back experiences of those receiving care. Of patients admitted to intensive care units (ICUs), approximately one-quarter die, and few survivors recollect their experiences, so family members have a vital role. The most widely validated tool to seek their views is the Family Satisfaction in the Intensive Care Unit questionnaire (FS-ICU).ObjectivesTo test face and content validity and comprehensibility of the FS-ICU (phase 1). To establish internal consistency, construct validity and reliability of the FS-ICU; to describe family satisfaction and explore how it varies by family member, patient, unit/hospital and other contextual factors and by country; and to model approaches to sampling for future use in quality improvement (phase 2).DesignMixed methods: qualitative study (phase 1) and cohort study (phase 2).SettingNHS ICUs (n = 2, phase 1;n = 20, phase 2).ParticipantsHealth-care professionals, ex-patients, family members of ICU patients (n = 41, phase 1). Family members of ICU patients (n = 12,303, phase 2).InterventionsNone.Main outcome measuresKey themes regarding each item of the 24-item FS-ICU (FS-ICU-24) (phase 1). Overall family satisfaction and domain scores of the FS-ICU-24 (phase 2).ResultsIn phase 1, face validity, content validity and comprehensibility were good. Adaptation to the UK required only minor edits. In phase 2, one to four family members were recruited for 60.6% of 10,530 patients (staying in ICU for 24 hours or more). Of 12,303 family members, 7173 (58.3%) completed the questionnaire. Psychometric assessment of the questionnaire established high internal consistency and criterion validity. Exploratory factor analysis indicated new domains:satisfaction with care,satisfaction with informationandsatisfaction with the decision-making process. All scores were high with skewed distributions towards more positive scores. For family members of ICU survivors, factors associated with increased/decreased satisfaction were age, ethnicity, relationship to patient, and visit frequency, and patient factors were acute severity of illness and invasive ventilation. For family members of ICU non-survivors, average satisfaction was higher but no family member factors were associated with increased/decreased satisfaction; patient factors were age, acute severity of illness and duration of stay. Neither ICU/hospital factors nor seasonality were associated. Funnel plots confirmed significant variation in family satisfaction across ICUs. Adjusting for family member and patient characteristics reduced variation, resulting in fewer ICUs identified as potential outliers. Simulations suggested that family satisfaction surveys using short recruitment windows can produce relatively unbiased estimates of average family satisfaction.ConclusionsThe Family-Reported Experiences Evaluation study has provided a UK-adapted, psychometrically valid questionnaire for overall family satisfaction and three domains. The large sample size allowed for robust multilevel multivariable modelling of factors associated with family satisfaction to inform important adjustment of any future evaluation.LimitationsResponses to three free-text questions indicate the questionnaire may not be sensitive to all aspects of family satisfaction.Future workReservations remain about the current questionnaire. While formal analysis of the free-text questions did not form part of this proposal, brief analysis suggested considerable scope for improvement of the FS-ICU-24.Study registrationCurrent Controlled Trials ISRCTN47363549.Funding detailsThe National Institute for Health Research Health Services and Delivery Research programme.

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“…If your family member died during the ICU stay, please answer the following questions (11)(12)(13). If your family member did not die, please skip to question 14.…”

Section: Process Of Making Decisionsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

See 1 more Smart Citation

Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families’ satisfaction with adult critical care services in the NHS

Wright

Walmsley

Harvey

et al. 2015

Health Serv Deliv Res

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“…The SF-36 PCS and MCS scales have no meaningful lower or upper bounds, but are standardised to have a mean of 50 and a standard deviation of 10 points based upon a representative sample from the United States population. The procedure for deriving the standardised PCS and MCS scores has been cross-culturally validated by the instrument developers (Bullinger et al, 1998). Higher scores represent better QoL in every case.…”

Section: Evaluation Of Quality Of Lifementioning

confidence: 99%

Multivariate regression analyses of data from a randomised, double-blind, placebo-controlled study confirm quality of life benefit of epoetin alfa in patients receiving non-platinum chemotherapy

Fallowfield

Gagnon

Zagari³

et al. 2002

Br J Cancer

111

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Cancer-related anaemia is associated with a wide spectrum of symptoms that can negatively affect quality of life. Because epoetin alfa has demonstrated efficacy in correcting cancer-related anaemia, the impact of this treatment on quality of life was evaluated in a multinational, randomised, double-blind, placebo-controlled trial in 375 anaemic cancer patients receiving nonplatinum-based chemotherapy. The cancer-specific measures of quality of life included the general scale (FACT-G Total) and fatigue subscale (FACT-An Fatigue subscale) of the Functional Assessment of Cancer Therapy-Anaemia and the Cancer Linear Analogue Scales measuring energy, ability to do daily activities, and overall quality of life. These measures were also used to examine the relationship between haemoglobin levels and quality of life. Both univariate and multiple linear regression analyses of quality of life data were performed. Results of the univariate analysis have been reported previously. The a priori-planned multiple linear regression analysis, which accounted for the effects of disease progression and several other possibly confounding variables on quality of life, showed a significant advantage for epoetin alfa over placebo for the five scales (all, P50.05), and confirmed the results of the univariate analysis. For cancer-specific measures, significant correlations were demonstrated between baseline haemoglobin and quality of life (r, range: 0.14 -0.26, all P50.05) and between change in haemoglobin and change in quality of life (r, range: 0.26 -0.34, all P50.01). These findings provide evidence that increasing haemoglobin levels by epoetin alfa administration can significantly improve cancer patients' quality of life.

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“…In order for the questionnaire to be used in a country with a different culture and language, it is not enough to merely translate it from the original language because the simple translation can alter the conceptual equivalence of the original instrument 3,6,[16][17][18][26][27][28][29] . The development of a new version requires transcultural adaptation to account for existing cultural and language differences.…”

Section: Introductionmentioning

confidence: 99%

The Brazilian version of the SRS-22r questionnaire for idiopathic scoliosis

Camarini¹,

Rosanova²,

Gabriel³

et al. 2013

Braz. J. Phys. Ther.

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| Background: The SRS-22r questionnaire is a well-accepted instrument used to measure health-related quality of life in patients with idiopathic scoliosis. No validated tool exists in Brazil for idiopathic scoliosis, and the use of the SRS-22r in non-English Laguage contries requires its transcultural adaptation. Objective: The objective of this study was to culturally adapt the translated Brazilian version of the SRS-22r questionnaire and to determine its reliability using statistical tests for internal consistency and test-retest reliability. Method: The transcultural adaptation process was carried out according to the recommendations of the American Academy of Orthopedic Surgeons. The pre-final version was administered to 44 patients with idiopathic scoliosis. The mean age of the participants was 18.93 years and the mean curve magnitude was 54.6°. A subgroup of 30 volunteers completed the questionnaire a second time one week later to determine the scale's reproducibility. Internal consistency was determined using Cronbach's alpha coefficient, and the test-retest reliability was determined using the Intraclass Correlation Coefficient (ICC). Results: No floor effects were observed using the Brazilian version of the SRS-22r. Ceiling effects were observed in the Pain and Satisfaction with Management domains. The internal consistency values were very good for 3 domains and good for 2 domains. The ICC values were excellent for all domains. Conclusions: The high values of internal consistency and ICC reproducibility suggest that this version of the questionnaire can be used in Brazilian patients with idiopathic scoliosis.Keywords: quality of life; scoliosis; questionnaires; rehabilitation. HOW TO CITE THIS ARTICLECamarini PMF, Rosanova GCL, Gabriel BS, Gianini PES, Oliveira AS. The Brazilian version of the SRS-22r questionnaire for idiopathic scoliosis. Braz J Phys Ther. 2013 Sept-Oct; 17(5):494-505. http://dx

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Translating Health Status Questionnaires and Evaluating Their Quality

Cited by 784 publications

References 17 publications

Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families’ satisfaction with adult critical care services in the NHS

Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families’ satisfaction with adult critical care services in the NHS

Multivariate regression analyses of data from a randomised, double-blind, placebo-controlled study confirm quality of life benefit of epoetin alfa in patients receiving non-platinum chemotherapy

The Brazilian version of the SRS-22r questionnaire for idiopathic scoliosis

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