January 2025
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5 Reads
Value in Health
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January 2025
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5 Reads
Value in Health
December 2024
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7 Reads
Quality of Life Research
Objectives Limited evidence is available about the content validity of the EQ-5D-5L in rare skin fragility disorders. Previous research has demonstrated that the skin irritation and self-confidence additional dimensions (bolt-ons) improve the content validity of the EQ-5D-5L in psoriasis and atopic dermatitis. Our aim was to investigate the content validity of the EQ-5D-5L and the two bolt-ons in Darier’s disease and Hailey-Hailey disease. Methods In 2023, we conducted qualitative, semi-structured interviews with 15 adult patients at a university dermatology clinic. Patients completed the EQ-5D-5L with two bolt-ons using a think-aloud technique. We used probing questions to explore the relevance, comprehensiveness and comprehensibility. Thematic analysis was applied to analyze the transcripts from the interviews. Results Most patients found both the EQ-5D-5L and the two bolt-ons comprehensible and relevant to their disease. All patients preferred the EQ-5D-5L with the two bolt-ons over the EQ-5D-5L alone. Twelve potential missing concepts were identified after the EQ-5D-5L + bolt-ons, but only financial impact and sex life were identified by more than one patient. Only one patient reported a conceptual overlap between the skin irritation bolt-on and the pain/discomfort dimension. Conclusions Our findings suggest that there is no actionable evidence indicating gaps in the content validity of the EQ-5D-5L with two bolt-ons in Darier’s and Hailey-Hailey disease. Future studies are encouraged to conduct quantitative psychometric testing of the bolt-ons in this and other chronic dermatological patient populations.
December 2024
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11 Reads
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1 Citation
Quality of Life Research
Background The objective of this study was to assess the content validity of the EQ-5D-5L and four bolt-ons: skin irritation, self-confidence, social relationships and sleep, for people with atopic dermatitis (AD) and chronic urticaria (CU). Methods Adults with AD or CU in the United Kingdom, with varying levels of severity, participated in either online or in-person semi-structured interviews. During the interviews, participants were first asked about the symptoms and impacts of their condition. They were then asked to complete the EQ-5D-5L and four bolt-ons using ‘think-aloud’ and retrospective probing. Interviews were recorded, transcribed, then analysed using content and thematic analysis. Results Thirty participants (N = 15 with AD; N = 15 with CU) were interviewed. Participants spontaneously reported itch (AD: 100%; CU: 93%), self-confidence (AD: 100%, CU: 47%), sleep (AD: 53%; CU: 53%), and social relationships (AD: 27%; CU: 60%). The skin irritation bolt-on was the most important or relevant dimension for 60% of AD and 73% of CU participants. For all participants, skin irritation and self-confidence bolt-ons improved the EQ-5D-5L’s comprehensiveness. Social relationships was more frequently ranked as the least relevant among the other bolt-ons. Conclusions This study assessed the content validity of four EQ-5D-5L bolt-ons within two patient populations. Skin irritation, self-confidence and sleep bolt-ons showed good evidence of content validity for people with AD and CU, providing support for their application in other skin conditions. The value of a social relationships bolt-on was less clear. Quantitative psychometric research is recommended to further support the use of bolt-ons in CU and AD.
December 2024
Value in Health
December 2024
Value in Health
December 2024
Value in Health
December 2024
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1 Read
Value in Health
December 2024
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5 Reads
Value in Health
November 2024
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2 Reads
Health and Quality of Life Outcomes
Background The use of EQ-5D instruments in clinical, policy and economic applications continues to grow internationally. Population norms studies provide baseline values against which demographic and patient groups are compared and inequality is assessed. This study presents updated EQ-5D-5L population norms for 2022–2023, evaluates inequality and compares the results with those of 2012. Methods Demographic and EQ-5D-5L data were obtained from mutually exclusive, representative samples of adults in three studies conducted from July 2022 through May 2023. EQ-5D-5L index values, EQ VAS scores, and ceilings (all dimensions at level 1) were calculated for age-sex groups and stratifiers including education, income, ethnicity, marital status, and employment status. For inequality, the Kakwani index was calculated for the EQ VAS scores and index values, and ordered logit models were used to obtain odds ratios for reporting higher levels of problems on each dimension for demographic groups. The results were compared with those from 2012 which included applying the value set that had been used for the 2022–2023 population norms to the 2012 states. Results Data were obtained form 2,989 respondents. The mean index value was 0.921, EQ VAS was 79.6 and the ceiling was 31.5%. The dimensions with the highest rates of reported problems at any level (2–5) were pain/discomfort (43%) and anxiety/depression (39%). The Kakwani index was 0.113 for EQ VAS and 0.058 for index values, with sex accounting for the largest relative contribution. Mean index values, EQ VAS scores, and ceilings were lower across all demographic groups in 2022–2023 compared to 2012. Conclusions This is the first study to investigate how EQ-5D-5L population norms have changed within a country over time. Significant changes were observed in the EQ-5D-5L measures and the relative frequencies of reported problems on the dimensions. Inequality increased, and there were changes in the levels of reported problems on the dimensions for demographic groups. Such changes suggest that national population norms should be updated periodically to capture changes in health status, perceptions of health, and health inequality.
October 2024
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28 Reads
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1 Citation
Health and Quality of Life Outcomes
Background Financial toxicity describes the impairment of financial wellbeing in patients due to the burden of cancer diagnosis and care. The COST: A Functional Assessment of Chronic Illness Therapy Measure of Financial Toxicity (FACIT-COST) is the most widely used cancer-specific measure of subjective financial toxicity, having been validated in multiple languages, but not in Indonesian. This study aimed to validate the Indonesian version of FACIT-COST in a breast cancer sample. Methods A single-center prospective cohort study was performed in Indonesia. Female breast cancer patients aged ≥ 18 undergoing treatment at baseline were invited to participate and followed for up to six months. The survey included the official Indonesian version of FACIT-COST (v2) which was administered to the patients by interviewers. Clinical information (e.g., metastasis status, disease duration) was provided based on medical records. The following measurement properties of FACIT-COST were tested: distributional characteristics, structural validity (principal component [PCA] and confirmatory factor analyses [CFA]), internal consistency reliability (Cronbach’s alpha and McDonald’s omega), known-groups validity (Mann-Whitney U or Kruskal-Wallis H test), test-retest reliability, and responsiveness to change. Results Overall, 300 female patients participated at baseline. No patients reported the best or worst possible FACIT-COST total scores. The PCA proposed a two-factor model structure for the instrument, which was confirmed by the CFA (RMSEA = 0.042, SRMR = 0.049, CFI = 0.99, TLI = 0.99). The internal consistency reliability of the two factors was considered adequate (Cronbach’s alpha = 0.774–0.882, McDonald’s omega = 0.786–0.888). The FACIT-COST total score significantly discriminated across the following known-groups: age, education, residential setting, income, employment, metastasis status, number of symptoms, and financial coping strategies. The FACIT-COST demonstrated excellent test-retest reliability (intraclass correlation coefficient = 0.96) and satisfactory responsiveness to change (standardized response mean and effect size ranges=|0.39| to |0.92|). Conclusions This is the first study to validate the FACIT-COST in patients with breast cancer and to present the measurement properties of the Indonesian version of FACIT-COST. The Indonesian FACIT-COST demonstrates acceptable psychometric performance and shows potential as a valid measure of subjective financial toxicity. The instrument may serve as a valuable tool for informing health policies that focus on providing resource support to improve cancer care in Indonesia.
... An EQ-5D-5L value set was published for Trinidad and Tobago in 2024 [16]. When the 2012 population norms were published, EQ-5D-5L index values were not available for Trinidad and Tobago, so EQ-5D-5L values were developed by applying a crosswalk algorithm [17] to the existing Trinidad and Tobago EQ-5D-3L values [18]. ...
July 2024
Health and Quality of Life Outcomes
... Marital status is another significant determinant of wellbeing. Married individuals typically report greater wellbeing than those who are single or divorced (Nguyen et al., 2024). Married individuals benefit from emotional support, shared financial resources, and a sense of partnership, all of which contribute to higher wellbeing (Tambyah, et al., 2024). ...
Reference:
Relative Income and Wellbeing in Canada
April 2024
Value in Health
... Bolt-ons typically have a similar format to the dimensions of the core EQ-5D instrument (e.g., short dimension title, same number of response levels and severity scale) and are intended to assess specific aspects of HRQoL that may not be fully captured by the five EQ-5D dimensions, offering a more comprehensive assessment of HRQoL [3]. Various bolt-on dimensions, such as cognition, relationships, sleep, vision, hearing and breathing, have been identified to improve its validity in specific patient populations [4,5]. In the field of dermatology, two additional dimensions, skin irritation (itching) and self-confidence have been developed for the five-level Márta Medvecz and Fanni Rencz have contributed equally to this work. ...
April 2024
Value in Health
... The odds ratio for age group on anxiety/depression moved from 1.8 to 0.54. This finding of older respondents reporting better EQ-5D-5L anxiety/depression outcomes than younger respondents has been observed elsewhere [24][25][26]. The odds of reporting higher levels of problems with anxiety/depression associated with income also changed direction, moving from 0.02 in 2012 to 1.59 in 2022-2023. ...
February 2024
PharmacoEconomics
... The general public in the United Kingdom regarded sensory deprivation and mental health items as significant dimensions not covered by the EQ-5D [17], while respondents from New Zealand raised examples such as fitness, happiness, mental health, and cognition as areas not illustrated by the EQ-5D [18]. In particular, the current EQ-5D instrument may not illustrate the HRQoL perception in the Asian communities well with its European development background [16], and some Asian communities such as China, Korean, Malaysia and Thailand have been attempting to develop its cultural-specific bolt-ons [19][20][21][22][23]. In Hong Kong context, ceiling effect could be observed as 46% of the respondents reported [11,111] in the EQ-5D-5 L [24]. ...
January 2024
BMJ Open
... Younger patients or those who are not actively employed could be more susceptible to have financial toxicity due to lower or no earning capacity. Meanwhile, those living in rural area may incur higher transportation costs to reach the medical facility for treatment [62]. Higher SFT was also reported by patients with metastatic cancer and experiencing more symptoms. ...
May 2024
Value in Health Regional Issues
... The two boltons showed good validity and responsiveness in psoriasis patients [6][7][8]. Furthermore, recent evidence suggests that the two bolt-ons can be applied in other dermatological conditions, such as atopic dermatitis and chronic urticaria, as well as in systemic diseases (e.g., chronic kidney disease) causing itching [9][10][11]. ...
October 2023
Quality of Life Research
... Interestingly, our study could not replicate the relatively high index values observed in the 2000 national health survey for the age 85+ (for both men and women). However, in that survey, representative in terms of sex, age groups, highest level of education, geographical region, and settlement type, using the 15D instrument [36]. The mean 15D index value was 0.810 using the Norwegian 15D value set. ...
September 2023
Quality of Life Research
... The retrospective cohort study by Salido-Vallejo et al. observed that the prognosis of cutaneous SCC is more closely related to other tumor-dependent risk factors than the immunocompromised state [33]. The retrospective analysis by Kuzmanovszki et al. revealed that elderly, polymorbid, and immunocompromised patients with cutaneous SCC can be effectively treated with anti-PD1 inhibitor cemiplimab [34]. ...
September 2023
... However, the Hungarian study's use of the Work Productivity and Activity Impairment (WPAI) questionnaire provides a more quantified view of the impact of AD on work productivity. While both our and the Hungarian study provide data on the high cost of managing AD, the Hungarian study's detailed analysis of the relationship between disease severity, duration, quality of life, and economic burden offers a more detailed analysis of the relationship between disease severity, duration, quality of life, and economic burden (26). The economic burden of atopic dermatitis among pediatric AD patients is high as well. ...
August 2023
BMC Health Services Research