Descriptive System Research Articles

Cross-cultural adaptation and content validation of the Singapore English version of EQ-5D-Y: a qualitative study

BackgroundThe EQ-5D-Y is a generic preference-weighted measure for children and adolescents which was developed within Europe. Two versions exist, the EQ-5D-Y-3L (Y-3L) and EQ-5D-Y-5L (Y-5L). This study aimed to cross-culturally adapt the Y-3L and Y-5L for use in Singapore and to assess the content validity, specifically, the relevance and comprehensiveness of the EQ-5D-Y descriptive system (DS) in Asia.MethodsTo culturally adapt the instruments, an expert panel consisting of paediatricians and primary school educators were consulted. Modifications suggested by the expert panel were tested via cognitive debriefing interviews with children aged 8–12 in Singapore. To assess the content validity of the EQ-5D-Y DS, interviews were conducted with both healthy (n = 8) and ill children (n = 6) aged 8–15. In the interviews, children discussed their experience with poor health and commented on the comprehensiveness and relevance of the EQ-5D-Y DS.ResultsThe cross-cultural adaptation process led to minor modifications to the UK English Y-3L and Y-5L versions, including using phrases familiar to the local children and adding examples to facilitate understanding. The five health dimensions in the EQ-5D-Y DS were spontaneously elicited when children discussed their experience with poor health. All health dimensions related to poor health elicited from the interviews fell into three broad categories: physical health (e.g. Appetite, Mobility, and Sleep), mental well-being (e.g. Annoyed/Frustrated and Scared/Worried), and social relationships (e.g. Family and Friends). The EQ-5D-Y DS was generally found to be relevant and comprehensive, although some health dimensions that may be relevant to the local population (Social relationship and Appetite) were not covered.ConclusionsThe UK English EQ-5D-Y instruments were adapted to produce the Singapore English EQ-5D-Y instrument that were comprehensible to local children as young as 8 years old. The EQ-5D-Y DS was generally relevant and comprehensive to measure poor health of local children. Future studies should ascertain the benefits of adding bolt-on items related to social relationships and appetite to the EQ-5D-Y DS.

Appropriateness of the EQ-5D-5L in capturing health-related quality of life in individuals with transfusion-dependent β-thalassemia: a mixed methods study

BackgroundIndividuals with transfusion-dependent β-thalassemia (TDT) experience symptoms and functional impacts that reduce their health-related quality of life. However, EQ-5D-derived health utility index scores in TDT often indicate good HRQoL, suggesting the EQ-5D may not adequately capture the impact of TDT. This study explored the disease and treatment burden of TDT and examined the appropriateness of the EQ-5D-5L descriptive system (DS) in measuring HRQoL in TDT.MethodsAdults with TDT in the United Kingdom, United States, and France completed a background questionnaire and EQ-5D-5L DS, followed by 60-minute semi-structured interviews on symptoms and HRQoL impacts of TDT (concept elicitation) and appropriateness of EQ-5D-5L DS (cognitive debrief). Transcribed interviews were analyzed using thematic and content analyses. The relationship between TDT symptoms and impacts were summarized in a conceptual model. EQ-5D-5L DS was mapped to concepts identified in the qualitative data to assess its capture of HRQoL concepts. Participants’ EQ-5D-5L DS scores were compared to their qualitative descriptions for each dimension to assess their concordance.ResultsThirty participants in the United States (n = 14 [46.7%]), United Kingdom. (n = 12 [40.0%]), and France (n = 4 [13.3%]) completed the study (73.3% female; mean age = 28.4 years [standard deviation (SD) = 5.1]; mean annual red blood cell transfusion [RBCT] frequency = 18.4 [SD = 7.6]). Participants reported TDT symptoms and impacts on HRQoL, all fluctuating across the RBCT cycle. EQ-5D-5L DS did not fully capture 11 of 16 (68.8%) HRQoL concepts reported. Most participants (n = 20/27 [74.1%]) reported that EQ-5D-5L DS did not capture important aspects of living with TDT, and 42.9% (n = 12/28) reported negative/neutral overall impressions of EQ-5D-5L DS. The highest degree of discordance between participants’ qualitative data and EQ-5D-5L DS dimension scores was observed with mobility (42.3%) and self-care (34.6%), where the qualitative descriptions relating to these dimensions were worse than their quantitative scores.ConclusionCurrent findings suggest that EQ-5D-5L DS lacks content validity and the derived health utility index score may not fully represent the burden of disease in TDT.

P29 Evaluating the Appropriateness of the EQ-5D-5L Descriptive System and the Derived Health Utility Index Scores in Adults with Transfusion-Dependent Beta-Thalassemia: A Mixed-Methods Study

Transfusion-dependent β-thalassemia (TDT) is a severe form of β-thalassemia requiring lifelong red blood cell transfusions (RBCTs) and iron-chelation therapy. EQ-5D is commonly used to derive health utility index scores for use in cost-effectiveness analyses. However, despite the range of symptoms and functional impacts of TDT, prior studies show that EQ-5D health utility scores in TDT are often comparable to general population scores and may not adequately represent the impact of TDT. To our knowledge, this is the first study examining the appropriateness of EQ-5D-5L descriptive system (DS) for use in adults with TDT.

Assessing the Content Validity of the EQ-5D Questionnaire Among Asians in Singapore: A Qualitative Study

Although the EQ-5D questionnaire is widely used to measure health status internationally, there is little evidence of its content validity in Asian populations. This qualitative study aimed to explore the content validity of the EQ-5D in Singapore. Sixty Singaporeans (Chinese: 20; Malay: 20; Indian: 20) completed semi-structured interviews in which they were asked about health concepts which were important to them and the relevance and comprehensiveness of the EQ-5D descriptive system (DS). Thematic analysis employing open, focused and axial coding was used to identify the themes and subthemes from the interviews. A total of 70 health concepts were identified which fall into the broad categories of 'physical health', 'mental well-being', 'social relationships', 'medical conditions and treatment', and 'health promotion knowledge and behaviours'. The 5 dimensions in the EQ-5D DS were among the health concepts nominated by participants. Some participants suggested that content validity could be improved by adding social relationships, medical conditions and treatment, and health promotion knowledge and behaviours to the EQ-5D DS. This study confirmed that EQ-5D dimensions are important and relevant aspects of health to Asians in Singapore, although some dimensions that could be important to Singaporeans are absent.