Julia Fox-Rushby

A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach

The health-related quality of life (HRQoL) literature presents a confused picture of what ‘equivalence’ in the cross-cultural use of HRQoL questionnaires means and how it can be assessed. Much of this confusion can be attributed to the ‘absolutist’ approach to the cross-cultural adaptation of HRQoL questionnaires. The purpose of this paper is to provide a model of equivalence from a universalist perspective and to link this to the translation and adaptation of HRQoL questionnaires. The model evolved from reviews of the HRQoL and other literatures, interviews and discussions with researchers working in HRQoL and related areas and practical experience in the adaptation and development of HRQoL instruments. The model incorporates six key types of equivalence. For each type of equivalence the paper provides a definition, proposes various strategies for examining whether and how types of equivalence can be achieved, illustrates the relationships between them and suggests the order in which they should be tested. The principal conclusions are: (1) that a universalist approach to the cross-cultural adaptation of HRQoL instruments requires that six types of equivalence be taken into account; (2) that these are sufficient to describe and explain the nature of the cross-cultural adaptation process; (3) that this approach requires careful qualitative research in target cultures, particularly in the assessment of conceptual equivalence; and (4) that this qualitative work will provide information which will be fundamental in deciding whether to adapt an existing instrument and which instrument to adapt. It should also result in a more sensitive adaptation of existing instruments and provide valuable information for interpreting the results obtained using HRQoL Instruments in the target culture.

WHO antenatal care randomised trial for the evaluation of a new model of routine antenatal care

BACKGROUND We undertook a multicentre randomised controlled trial that compared the standard model of antenatal care with a new model that emphasises actions known to be effective in improving maternal or neonatal outcomes and has fewer clinic visits. METHODS Clinics in Argentina, Cuba, Saudi Arabia, and Thailand were randomly allocated to provide either the new model (27 clinics) or the standard model currently in use (26 clinics). All women presenting for antenatal care at these clinics over an average of 18 months were enrolled. Women enrolled in clinics offering the new model were classified on the basis of history of obstetric and clinical conditions. Those who did not require further specific assessment or treatment were offered the basic component of the new model, and those deemed at higher risk received the usual care for their conditions; however, all were included in the new-model group for the analyses, which were by intention to treat. The primary outcomes were low birthweight (<2500 g), pre-eclampsia/eclampsia, severe postpartum anaemia (<90 g/L haemoglobin), and treated urinary-tract infection. There was an assessment of quality of care and an economic evaluation. FINDINGS Women attending clinics assigned the new model (n=12568) had a median of five visits compared with eight within the standard model (n=11958). More women in the new model than in the standard model were referred to higher levels of care (13.4% vs 7.3%), but rates of hospital admission, diagnosis, and length of stay were similar. The groups had similar rates of low birthweight (new model 7.68% vs standard model 7.14%; stratified rate difference 0.96 [95% CI -0.01 to 1.92]), postpartum anaemia (7.59% vs 8.67%; 0.32), and urinary-tract infection (5.95% vs 7.41%; -0.42 [-1.65 to 0.80]). For pre-eclampsia/eclampsia the rate was slightly higher in the new model (1.69% vs 1.38%; 0.21 [-0.25 to 0.67]). Adjustment by several confounding variables did not modify this pattern. There were negligible differences between groups for several secondary outcomes. Women and providers in both groups were, in general, satisfied with the care received, although some women assigned the new model expressed concern about the timing of visits. There was no cost increase, and in some settings the new model decreased cost. INTERPRETATIONS Provision of routine antenatal care by the new model seems not to affect maternal and perinatal outcomes. It could be implemented without major resistance from women and providers and may reduce cost.

'Equivalence' and the translation and adaptation of health-related quality of life questionnaires.

The increasing use of health-related quality of life (HRQOL) questionnaires in multinational studies has resulted in the translation of many existing measures. Guidelines for translation have been published, and there has been some discussion of how to achieve and assess equivalence between source and target questionnaires. Our reading in this area had led us, however, to the conclusion that different types of equivalence were not clearly defined, and that a theoretical framework for equivalence was lacking. To confirm this we reviewed definitions of equivalence in the HRQOL literature on the use of generic questionnaires in multicultural settings. The literature review revealed: definitions of 19 different types of equivalence; vague or conflicting definitions, particularly in the case of conceptual equivalence; and the use of many redundant terms. We discuss these findings in the light of a framework adapted from cross-cultural psychology for describing three different orientations to cross-cultural research: absolutism, universalism and relativism. We suggest that the HRQOL field has generally adopted an absolutist approach and that this may account for some of the confusion in this area. We conclude by suggesting that there is an urgent need for a standardized terminology within the HRQOL field, by offering a standard definition of conceptual equivalence, and by suggesting that the adoption of a universalist orientation would require substantial changes to guidelines and more empirical work on the conceptualization of HRQOL in different cultures.

A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America

In recent years there has been a worldwide increase in demand for subjective measures of health-related quality of life (HRQL). Researchers have the choice of whether to develop a new measure or whether to adapt an existing measure in another language. This review evaluates the processes used in translating and adapting nine generic HRQL instruments (15D, Dartmouth COOP/WONCA Charts, EuroQol, HUI, NHP, SIP, SF-36, QWB, WHOQOL) for use in Africa, Asia, Eastern Europe, the Middle East, and South America. The review adopts a universalist model of equivalence, outlined by Herdman, Fox-Rushby, and Badia (Qual. Life Res. 7 (1998) 323), to judge the 58 papers reviewed. Research spans 23 countries and is dominated by research in the East Asia and Pacific region and the SF-36. Results are reported for conceptual, item, semantic, operational, measurement and functional equivalence. It is argued that currently there is a misguided pre-occupation with scales rather than the concepts being scaled and too much reliance on unsubstantiated claims of conceptual equivalence. However, researchers using the WHOQOL approach are more likely to establish reliable conclusions concerning the equivalence of their instrument across countries. It is a key conclusion of this review that research practice and translation guidelines still need to change to facilitate more effective and less biased assessments of equivalence of HRQL measures across countries.

Inequalities in purchase of mosquito nets and willingness to pay for insecticide-treated nets in Nigeria: Challenges for malaria control interventions

ObjectiveTo explore the equity implications of insecticide-treated nets (ITN) distribution programmes that are based on user charges.MethodsA questionnaire was used to collect information on previous purchase of untreated nets and hypothetical willingness to pay (WTP) for ITNs from a random sample of householders. A second survey was conducted one month later to collect information on actual purchases of ITNs. An economic status index was used for characterizing inequity.Major findingsThe lower economic status quintiles were less likely to have previously purchased untreated nets and also had a lower hypothetical and actual WTP for ITNs.ConclusionITN distribution programmes need to take account of the diversity in WTP for ITNs if they are to ensure equity in access to the nets. This could form part of the overall poverty reduction strategy.

Economic evaluation of communicable disease interventions in developing countries: a critical review of the published literature.

Limited health care budgets have emphasized the need for providers to use resources efficiently. Accordingly, there has been a rapid increase in the number of economic evaluations of communicable disease health programmes in developing countries, as there is a need to implement evidence-based policy decisions. However, given the prohibitive cost of many economic evaluations in low-income countries, interest has also been generated in pooling data and results of previously published studies. Yet, our review demonstrated that very few published economic evaluations have been performed during 1984-1997 (n=107). Certain diseases and geographical areas have also been neglected. Of those studies published, appropriate analytic techniques have been inconsistently applied. In particular, there are four immediate concerns: the narrow perspective taken-dominance of the health care provider viewpoint and reliance on intermediate outcomes measures; bias-some costs were excluded from estimates; the lack of transparency-sources of data not identified; and the absence of a critical examination of findings-many papers failed to perform a sensitivity analysis. The usefulness of previously published economic evaluations to help make resource allocation choices on an individual basis and, therefore, for the purpose of international comparisons, pooling or meta-analysis, has to be questioned in light of the results from this study.

Household costs of "malaria" morbidity: a study in Matale district Sri Lanka.

Summary Short‐run economic consequences of ‘malaria’ on households were examined in a household survey in Matale, a malaria‐endemic district of Sri Lanka. On average a household incurred a total cost of Rs 318 (US

Efficacy and cost of video-assisted thoracoscopic partial pleurectomy versus talc pleurodesis in patients with malignant pleural mesothelioma (MesoVATS): an open-label, randomised, controlled trial

7) per patient who fully recovered from ‘malaria’. 24% of this was direct cost, 44% indirect cost for the patient and 32% indirect cost for the household. Direct costs were greater for those seeking treatment in the private sector. Notably a large proportion of direct costs was spent on complementary goods such as vitamins and foods considered to be nutritional. Indirect cost was measured and valued on the basis of output/ income losses incurred at the household level rather than using a general indicator such as average wage rate. Loss of output and wages accounted for the highest proportion of the indirect cost of the patients as well as the households. Relative to children, more young adults and middle‐aged people had ‘malaria’ which also caused greater economic loss in these age groups. Women tended to care for patients rather than substitute their labour to cover productive work lost due to illness. We compare the methods used by other researchers for valuing indirect cost, demonstrating the significant impact that methods of measurement and valuation can have on the estimation of indirect cost, and justify the recommendation for methodological research in this area.

Potential economic impacts from improving breastfeeding rates in the UK

BACKGROUND Malignant pleural mesothelioma incidence continues to rise, with few available evidence-based therapeutic options. Results of previous non-randomised studies suggested that video-assisted thoracoscopic partial pleurectomy (VAT-PP) might improve symptom control and survival. We aimed to compare efficacy in terms of overall survival, and cost, of VAT-PP and talc pleurodesis in patients with malignant pleural mesothelioma. METHODS We undertook an open-label, parallel-group, randomised, controlled trial in patients aged 18 years or older with any subtype of confirmed or suspected mesothelioma with pleural effusion, recruited from 12 hospitals in the UK. Eligible patients were randomly assigned (1:1) to either VAT-PP or talc pleurodesis by computer-generated random numbers, stratified by European Organisation for Research and Treatment of Cancer risk category (high vs low). The primary outcome was overall survival at 1 year, analysed by intention to treat (all patients randomly assigned to a treatment group with a final diagnosis of mesothelioma). This trial is registered with ClinicalTrials.gov, number NCT00821860. FINDINGS Between Oct 24, 2003, and Jan 24, 2012, we randomly assigned 196 patients, of whom 175 (88 assigned to talc pleurodesis, 87 assigned to VAT-PP) had confirmed mesothelioma. Overall survival at 1 year was 52% (95% CI 41-62) in the VAT-PP group and 57% (46-66) in the talc pleurodesis group (hazard ratio 1·04 [95% CI 0·76-1·42]; p=0·81). Surgical complications were significantly more common after VAT-PP than after talc pleurodesis, occurring in 24 (31%) of 78 patients who completed VAT-PP versus ten (14%) of 73 patients who completed talc pleurodesis (p=0·019), as were respiratory complications (19 [24%] vs 11 [15%]; p=0·22) and air-leak beyond 10 days (five [6%] vs one [1%]; p=0·21), although not significantly so. Median hospital stay was longer at 7 days (IQR 5-11) in patients who received VAT-PP compared with 3 days (2-5) for those who received talc pleurodesis (p<0·0001). INTERPRETATION VAT-PP is not recommended to improve overall survival in patients with pleural effusion due to malignant pleural mesothelioma, and talc pleurodesis might be preferable considering the fewer complications and shorter hospital stay associated with this treatment. FUNDING BUPA Foundation.

The costs, effects and cost-effectiveness of strategies to increase coverage of routine immunizations in low- and middle-income countries: systematic review of the grey literature

Rationale Studies suggest that increased breastfeeding rates can provide substantial financial savings, but the scale of such savings in the UK is not known. Objective To calculate potential cost savings attributable to increases in breastfeeding rates from the National Health Service perspective. Design and settings Cost savings focussed on where evidence of health benefit is strongest: reductions in gastrointestinal and lower respiratory tract infections, acute otitis media in infants, necrotising enterocolitis in preterm babies and breast cancer (BC) in women. Savings were estimated using a seven-step framework in which an incidence-based disease model determined the number of cases that could have been avoided if breastfeeding rates were increased. Point estimates of cost savings were subject to a deterministic sensitivity analysis. Results Treating the four acute diseases in children costs the UK at least £89 million annually. The 2009–2010 value of lifetime costs of treating maternal BC is estimated at £959 million. Supporting mothers who are exclusively breast feeding at 1 week to continue breast feeding until 4 months can be expected to reduce the incidence of three childhood infectious diseases and save at least £11 million annually. Doubling the proportion of mothers currently breast feeding for 7–18 months in their lifetime is likely to reduce the incidence of maternal BC and save at least £31 million at 2009–2010 value. Conclusions The economic impact of low breastfeeding rates is substantial. Investing in services that support women who want to breast feed for longer is potentially cost saving.