Measurement properties of the EQ-5D-3L, EQ-5D-5L, and SF-6Dv2 in patients with late-onset Pompe disease.

OBJECTIVE: The objective of this study was to evaluate the psychometric properties of the EQ-5D (3L and 5L) and SF-6Dv2 in a group of Chinese patients with late-on Pompe disease (PD), and compare their performance in this patient group. METHODS: The data used in this study were obtained from a web-based and cross-sectional survey conducted in China. All participants completed the 3L, 5L, and SF-6Dv2. Information about their sociodemographic status and health conditions was also collected. The measurement properties were assessed by examining ceiling and floor effects, evaluating convergent validity, known-group validity, and test-retest reliability (Intraclass correlation coefficient [ICC] and Gwet's AC). RESULTS: A total of 117 PD patients completed the questionnaire. All dimensions of the 3L showed strong ceiling effects, ranging between 17.1 and 42.7%. All three measures showed good test-retest reliability, with ICC values ranging from 0.85 to 0.87. The Gwet's AC values showed that four out of five dimensions of the 3L showed very good agreement. All hypothesized correlations between the 3L, 5L, SF-6Dv2, and items of WHODAS were supported, indicating satisfactory convergent validity. The 5L showed stronger correlations (|r|= 0.53-0.84) with WHODAS than the other two measures. The outcomes of ANOVA indicated that the 5L had higher F-statistics than the 3L and SF-6Dv2, indicating a stronger discriminant ability to differentiate most condition groups. CONCLUSION: The 5L demonstrates lower ceiling and floor effects, higher discriminant ability, and better convergent validity than the SF-6Dv2 and 3L in patients with PD. In addition, the 5L may generate a larger utility gain compared to the other two instruments when conducting cost-effectiveness analysis.

A Spanish value set for the SF-6D based on the SF-12 v1.

AIM: This paper reports the first estimation of an SF-6D value set based on the SF-12 for Spain. METHODS: A representative sample (n = 1020) of the Spanish general population valued a selection of 56 hypothetical SF-6D health states by means of a probability lottery equivalent (PLE) method. The value set was derived using both random effects and mean models estimated by ordinary least squares (OLS). The best model was chosen on the basis of its predictive ability assessed in terms of mean absolute error (MAE). RESULTS: The model yielding the lowest MAE (0.075) was that based on main effects using OLS. Pain was the most significant dimension in predicting health state severity. Comparison with the previous SF-6D (SF-36) model estimated for Spain revealed no significant differences, with a similar MAE (0.081). Nevertheless, the new SF-6D (SF-12) model predicted higher utilities than those generated by the SF-6D (SF-36) scoring algorithm (minimum value - 0.071 vs - 0.357). CONCLUSION: A value set for the SF-6D (SF-12) based on Spanish general population preferences elicited by means of a PLE technique is successfully estimated. The new estimated SF-6D (SF-12) preference-based measure provides a valuable tool for researchers and policymakers to assess the cost-effectiveness of new health technologies in Spain.

Estimating Utility Values for Health States of Nigerian Individuals with Stroke or Epilepsy Using the SF-36: A Brief Report on the Results of a Cross-Sectional Survey.

Background. Stroke and epilepsy are the most common neurologic conditions affecting individuals. The Short Form Six-Dimension Health Index (SF-6D) is a preference-based measure of health developed to estimate utility values from the SF-36. This study estimated utility values for health states of Nigerian individuals with stroke or epilepsy using the SF-36. Methods. SF-36 responses from 125 and 69 individuals with stroke and persons with epilepsy, respectively, were transformed into health state utility values using the SF-6D algorithm. The Excel program developed by Brazier and colleagues was used to generate the SF-6D utility score estimated using a set of parametric preference weights. The health state utility values were determined using ordinal health state and standard gamble valuation techniques. Results. Mean (s) ages of the stroke and epilepsy participants were 63.1 (11) and 39.6 (16) y, respectively. The mean (s) utility scores for stroke and epilepsy were 0.52 (0.10) and 0.65 (0.1) for standard gamble and 0.48 (0.13) and 0.68 (0.11), respectively, using the ordinal health state paradigm. The mean (s) utility of stroke (female = 0.46 [0.15]; male = 0.50 [0.12]) and epilepsy (female = 0.65 [0.13], male = 0.69 [0.11]) participants were reported. The mean (s) annual episodes of seizure was 18.7 (39). Conclusions. To our knowledge, this is the first study to suggest that females with stroke and those with epilepsy considered their health to be poorer than that of their male counterparts. The significance of our findings is that they may be helpful for researchers, policy makers, and clinicians by providing input into economic evaluations to facilitate resource allocation for stroke survivors and people living with epilepsy to improve their health outcomes and reduce the huge burden associated with the conditions. Highlight: We estimated a health state utility value for stroke and epilepsy to aid researchers and public health policy makers in conducting health economic analysis and outcomes research.

On the ability of the SF-6D to capture the consequences of chronic illnesses on subjective well-being: Evidence from France.

Using cross-sectional data from a representative sample of the French population (the 2008 Disability Health survey), this paper examines whether the SF-6D, a widely used preference-based measure of health-related quality of life in economic evaluations, fully captures the variation in subjective well-being (SWB) due to chronic illnesses. We conduct a mediation analysis to disentangle the direct and indirect, through the SF-6D, effects of various chronic conditions on SWB (happiness). Our results show that the SF-6D reflects changes in happiness due to most illnesses except mental illness. Changes in SWB mediated by the SF-6D account for 74% of the total effect. The variation unexplained by the SF-6D is significant and increases substantially in the presence of multimorbidity when a chronic illness is combined with anxiety or depression. Overall, our results suggest that the SF-6D incompletely captures the subjective experience of chronically ill patients, especially those with comorbid conditions.

SF-6D Normative Values Among Patients Undergoing Bariatric Surgery: Results Based on Real-World Evidence from the Scandinavian Obesity Surgery Registry (SOReg).

BACKGROUND: The SF-6D index can be used to calculate quality-adjusted life years in economic evaluations, which is required by reimbursement agencies and national advisory bodies, including the Swedish ones. However, despite that SF-36 has been largely applied among patients undergoing bariatric surgery, almost no study has accessed the short form six-dimensions (SF-6D) after bariatric surgery. AIM: To establish normative values for the SF-6D index among patients undergoing bariatric surgery. MATERIALS AND METHODS: All patients who received bariatric surgery in Sweden between 2011-01-01 and 2019-03-31 were obtained from the Scandinavian Obesity Surgery Registry (SOReg). Information includes patients' sociodemographic characteristics, details regarding the procedure, and postsurgical conditions. The SF-36 is applied at baseline and at follow-up years 1, 2, and 5. The multiple sequential imputation method was applied to handle missingness on SF-6D items. Based on the UK tariff, the SF-6D preference scores were calculated. The normative values for the mean (SD) SF-6D index were reported by timepoint and surgical complications for men and women, respectively. Multivariate analyses were applied to investigate how the SF-6D index is associated with timepoint, controlling for age, sex, BMI, and comorbidities in a stepwise manner. RESULTS: The SF-6D index increased at 1 year relative to baseline and was roughly maintained at the same level at 2 years. The normative value of the SF-6D index can be used in economic evaluations for bariatric surgery.

Creating an SF-6Dv2 social value set for New Zealand.

The SF-6D health descriptive system and its second version published in 2020, the SF-6Dv2, is used worldwide for valuing health-related quality of life (HRQoL) for economic evaluation and measuring patient-reported health outcomes. In this study, a valuation tool was developed and applied to create a social value set, comprising 18,750 health state values, for the SF-6Dv2 for New Zealand (NZ). This tool was adapted and extended from the one used to create a social value set for the EQ-5D-5L, a simpler health descriptive system with fewer dimensions and health states. The tool implements the PAPRIKA method, a type of adaptive discrete choice experiment, and a binary search algorithm to identify health states worse than dead and has extensive data quality controls to ensure the validity and reliability of the social value set derived from participants' personal value sets. The tool, accompanied by a short introductory video designed specifically for the SF-6Dv2, was distributed via an online survey to a large representative sample of adult New Zealanders in June-July 2022. The tool's data quality controls enabled participants who failed to understand or sincerely engage with the valuation tasks to be identified and excluded, resulting in the participants being pared down to a sub-sample of 2985 'high-quality' participants whose personal value sets were averaged for the social value set. These results, including participants' positive feedback, demonstrate the feasibility and acceptability of using the tool to value larger health descriptive systems such as the SF-6Dv2. Having successfully created an SF-6Dv2 social value set for NZ, the valuation tool can be readily applied to other countries, used to generate personal value sets for personalised medicine and adapted to create value sets for other health descriptive systems.

Psychometric performance of the CFQ-R-8D compared to the EQ-5D-3L and SF-6D in people with cystic fibrosis.

OBJECTIVE: This study aimed to compare the psychometric performance of the Cystic Fibrosis Questionnaire-Revised-8 Dimensions (CFQ-R-8D), a new, condition-specific, preference-based measure, with that of generic preference-based measures EQ-5D-3L and Short Form 6 dimensions (SF-6D). METHODS: Data from three trials of participants with CF aged ≥ 14 years who completed the CFQ-R and EQ-5D-3L or SF-6D were used. Analyses were undertaken to evaluate convergent validity based on correlations with CFQ-R domain scores. Known-group validity was assessed based on percent predicted forced expiratory volume in one second and pulmonary exacerbations. Responsiveness was based on correlation of change and sensitivity to change based on change in symptom severity. Effect sizes and standardized response means were estimated. RESULTS: CFQ-R-8D utilities and dimensions were strongly correlated with most of the overlapping CFQ-R domain scores (ρ > 0.5); EQ-5D-3L and SF-6D utilities and dimensions had moderate (ρ > 0.3) to strong correlations in dimensions capturing similar concepts. All measures showed evidence of known-group validity (P < 0.05). Change correlations were strong for CFQ-R-8D utilities and dimensions and CFQ-R, but they were moderate for SF-6D and mostly weak ((ρ > 0.1) for EQ-5D-3L. The SF-6D had the largest mean change over time and effect sizes, followed by CFQ-R-8D and then EQ-5D-3L. Neither CFQ-R-8D or SF-6D utility scores had ceiling effects (< 9% responses in full health) compared with those of EQ-5D-3L (61-62%). In participants classified as being in full health by EQ-5D-3L, CFQ-R-8D captured CF-specific health problems, particularly cough, abdominal pain, and breathing difficulty. CONCLUSIONS: The CFQ-R-8D reflected known-group differences and changes over time with stronger evidence of good psychometric performance than EQ-5D-3L and similar evidence as SF-6D. Additionally, the CFQ-R-8D captured more condition-specific symptoms than EQ-5D-3L or SF-6D, which are important determinants of health-related quality of life for people with CF.

Health domains and race in generic preference-based health-related quality of life instruments in the United States literature / Domínios de saúde e raça nas medidas genéricas de qualidade de vida associada à saúde na literatura dos Estados Unidos / Dominios de salud y raza en las medidas genéricas de calidad de vida, asociada a la salud, en la literatura de los Estados Unidos

Race differences in health have been extensively analyzed and documented in the literature, especially between African Americans or blacks and whites in the United States. Despite the vast literature in the area, the majority of studies that explore the relationship between race and health use outcomes such as self-rated health, mortality or morbidity, and disability, but very few use Health-Related Quality of Life (HRQoL) measures and their domains or dimensions. This narrative review aims to provide a better understanding of the relationship between race and health domains that are commonly used in preference-based HRQoL measures. We investigated the literature on race, physical health, mental health, pain and discomfort, cognition, neurologic spectrum domains, dexterity, ambulation, vitality and social functioning domains. We conducted a literature search and review using the key words race and the health domain of interest, using medical and social sciences databases, such as MEDLINE/Pubmed, Web of Science, and the Google Scholar portal.The majority of the studies identified in the literature show that African Americans or blacks in the United States tend to have lower scores than whites throughout a variety of health domains found in preference-based HRQoL measures. This review also emphasizes the scarcity of studies that investigate some health domains, such as social functioning, dexterity, vitality and neurologic spectrum domains, and therefore we identify the need for more studies focusing on race and measures that address such domains.

A literatura sobre raça nos Estados Unidos está repleta de estudos que documentam diferenças na saúde entre negros e brancos. Entretanto, a maioria dos trabalhos que exploram a relação entre raça e saúde utiliza medidas com saúde autorrelatada, mortalidade e morbidade, mas poucos empregam medidas de qualidade de vida relacionada à saúde e seus domínios específicos. Este artigo revisa a literatura sobre raça e qualidade de vida relacionada à saúde, especificamente examinando os domínios que constituem as principais medidas baseadas na teoria da utilidade: saúde física; saúde mental; dor e desconforto; cognição; domínios neurológicos; destreza; locomoção; vitalidade; e funcionamento social. Conduziu-se uma revisão da literatura usando as palavras-chave raça e o domínio da qualidade de vida de interesse nos Estados Unidos. Foram consultadas as bases de dados Medline/Pubmed, Web of Science e o portal Google Scholar. A maioria dos estudos sobre diversos domínios das medidas de qualidade de vida investigados sugere que negros têm pior qualidade de vida do que brancos nos Estados Unidos. A revisão salienta a escassez de estudos que exploram a relação entre raça e alguns domínios, como, por exemplo, funcionamento social, destreza, vitalidade e domínios de escopo neurológico, e, portanto, mostra a necessidade de que futuros estudos examinem a relação entre raça e estes domínios.

La literatura sobre raza en los Estados Unidos está repleta de estudios que documentan diferencias en la salud entre negros y blancos. No obstante, la mayoría de los trabajos que explotan la relación entre raza y salud utiliza medidas con salud autorrelatada, mortalidad y morbilidad, pero pocos emplean medidas de calidad de vida relacionada con la salud y sus dominios específicos. Este artículo revisa la literatura sobre raza y calidad de vida relacionada con la salud, específicamente, examinando los dominios que constituyen las principales medidas basadas en la teoría de la utilidad: salud física; salud mental; dolor y molestias; cognición; dominios neurológicos; agilidad; locomoción; vitalidad; y funcionamiento social. Se realizó una revisión de la literatura usando las palabras-clave raza y el dominio de la calidad de vida de interés en los Estados Unidos. Se consultaron las bases de datos Medline/Pubmed, Web of Science y el portal Google Scholar. La mayoría de los estudios sobre diversos dominios de las medidas de calidad de vida investigados sugiere que los negros tienen peor calidad de vida que los blancos en los Estados Unidos. La revisión resalta la escasez de estudios que explotan la relación entre raza y algunos dominios, como, por ejemplo, funcionamiento social, agilidad, vitalidad y dominios de objetivo neurológico, y, por tanto, muestra la necesidad de que futuros estudios examinen la relación entre raza y estos dominios.