Health-related Quality Of Life Instruments Research Articles

An Investigation of Inter-Rater and Intra-Proxy Agreement in Measuring Quality of Life of Children in the Community Using the EQ-5D-Y-3L.

Self-reporting of health-related quality of life (HRQoL) in children is not always feasible. To date, proxy perspectives (Proxy versions 1 and 2) using the EQ-5D-Y-3L have not been explored for its impact on agreement with child self-report. Proxy version 1 requires the proxy to consider their own view of the child's HRQoL (proxy-proxy), while with Proxy version 2, the proxy is asked to respond as they believe their child would self-report their HRQoL (proxy-child). This study compared the inter-rater and intra-proxy agreement (overall and dimension level) using the EQ-5D-Y-3L self, proxy-proxy, and proxy-child reports. A community-based sample of child (aged 6-12 years) and parent dyads were invited to participate in a semi-structured interview. The child self-completed the EQ-5D-Y-3L independently of the parent who completed the EQ-5D-Y-3L from proxy-proxy and proxy-child perspectives. Agreement was determined using Concordance Correlation Coefficients (CCCs) for the overall (preference-weighted) HRQoL, while agreement at the dimension level was evaluated using Gwet's agreement coefficient (AC1). To assess the differences between the self and the two proxy reports, the Wilcoxon matched-pair signed-rank test was used. This study involved 85 child-parent dyads. The agreement between self and proxy overall HRQoL was low (fair) with both proxy-proxy (CCC=0.28) and proxy-child (CCC=0.26) reports. The largest discrepancy in the child-proxy agreement at dimension level with both the proxy versions was observed for 'feeling worried, sad or unhappy'. Within this dimension, the proxy-child perspective resulted in a stronger agreement (AC1=0.7, good) with child self-report compared with the traditional proxy-proxy perspective (AC1=0.58, moderate). Although the preference-weighted HRQoL was consistent across both the proxy perspectives, a significant difference was observed in the EQ VAS scores (p=0.02). This study demonstrates that choice of proxy perspective may have an impact on the problems reported on HRQoL dimensions and EQ VAS scores. However, in this community-based sample of generally healthy children, no significant difference was observed in the inter-rater agreement for child-self and proxy preference-weighted EQ-5D-Y-3L values based on proxy perspectives. While this suggests that preference-weighted data are not sensitive to the choice of perspective, these findings may differ for different HRQoL instruments and for alternative value sets with different properties.

Validation of China Health-Related Outcomes Measures-Cardiovascular Disease

ObjectivesChina Health-Related Outcomes Measures (CHROME) was an initiative aimed at developing a system of preference-based health-related quality of life instruments for China. CHROME-cardiovascular disease (CVD) is a CVD-specific instrument with 14 items developed under this initiative. This study aimed to test the psychometric properties of CHROME-CVD. MethodsThis validation study was conducted using cross-sectional questionnaire survey in China. Eligible patients with CVD were recruited and asked to complete the CHROME-CVD, the EQ-5D-5L, and a CVD-specific nonpreference-based health-related quality of life instrument selected according to the confirmed diagnosis of the patients. Item evaluation, internal consistency, measurement invariance, test-retest reliability, structural validity, and construct validity were tested using classic test theory. Item response theory was used to evaluate item-level performance. ResultsA total of 444 patients with CVD (coronary artery disease, n = 276, heart failure, n = 104, angina, n = 33, and atrial fibrillation, n = 16) from 6 provinces in China were enrolled for the validation. Exploratory factor analysis identified 4 factors: chest pain, other symptoms, physical health, and mental and social health. Cronbach’s alpha and intraclass correlation coefficient were >0.8. A total of 20 of 26 (76.9%), and 90 of 95 (94.7%) predefined hypotheses were met for convergent and discriminant validities, respectively. No important difference was identified between subgroups of gender and residency. Response options of 10 items were found overlapped based on categorical response curves, which led to modification to 4-level response options. Wording of 3 items were modified by referring wordings of reference instruments. ConclusionThe validation of the CHROME-CVD demonstrated generally good psychometric properties. Further validation on the modified CHROME-CVD is needed.

The RETRIEVE Checklist for Studies Reporting the Elicitation of Stated Preferences for Child Health-Related Quality of Life.

Recent systematic reviews show varying methods for eliciting, modelling, and reporting preference-based values for child health-related quality-of-life (HRQoL) outcomes, thus producing valuesets with different characteristics. Reporting in many of the reviewed studies was found to be incomplete and inconsistent, making them difficult to assess. Checklists can help to improve standards of reporting; however, existing checklists do not address methodological issues for valuing child HRQoL.Existing checklists also focus on reporting methods and processes used in developing HRQoL values, with less focus on reporting of the values' key characteristics and properties. We aimed to develop a checklist for studies generating values for child HRQoL, including for disease-specific states and value sets for generic child HRQoL instruments. A conceptual model provided a structure for grouping items into five modules. Potential items were sourced from an adult HRQoL checklist review, with additional items specific to children developed using recent reviews. Checklist items were reduced by eliminating duplication and overlap, then refined for relevance and clarity via an iterative process. Long and short checklist versions were produced for different user needs. The resulting long RETRIEVE contains 83 items, with modules for reporting methods (A-D) and characteristics of values (E), for researchers planning and reporting child health valuation studies. The short RETRIEVE contains 14 items for decision makers or researchers choosing value sets. Applying the RETRIEVE checklists to relevant studies suggests feasibility. RETRIEVE has the potential to improve completeness in the reporting of preference-based values for child HRQOL outcomes and to improve assessment of preference-based value sets.

Relationship between prevalence of cardiometabolic diseases, self-reported memory loss, and self-reported depressed mood of older adults in Korea according to frailty and physical activity status

As the older population increases worldwide, frailty is the area of research that deserve further investigation and is considered a major social and public health concern. Frailty appears physically and mentally, and recently, the term cognitive frailty has been used to combine physical frailty and mild cognitive impairment syndrome. Frailty in older adults is characterized by low physical activity levels and a sedentary lifestyle. Physical activity is essential in managing mental health issues such as depression and can improve the executive function and memory of older adults with mild cognitive impairment. Therefore, this study aimed to examine the prevalence of cardiometabolic diseases, self-reported memory loss, and depression among older adults in Korea according to frailty and physical activity status. Using data from the 2019 Korea National Health and Nutrition Survey, this study analyzed 613 community-dwelling older males aged ≥65 years. Physical activity was measured using a Global Physical Activity Questionnaire. A health-related quality of life instrument with eight items (HINT-8) was used to assess self-reported memory loss and depressed mood. Relationships between physical activity levels, self-reported memory loss and depressed mood were analyzed using logistic regression. The incidence of HINT-8 memory (0.52 (95% confidence interval (CI): 0.32–0.85)) was significantly lower in the Physical Activity Level (PAL)-high/pre-frail; the incidence of HINT-8 depression (0.35 (95% CI: 0.21–0.59); 0.29 (95% CI: 0.17–0.52)) was significantly lower in the and PAL-high/pre-frail. We verified that the group with PAL-low/frail had the highest self-reported memory loss and depressed mood, suggesting that more physical activity may reduce self-reported memory loss and depressed mood among frail older males in Korea. However further research is needed to analyze the level of physical activity separately between work and leisure.

Development of a disease-specific health utility score for chronic obstructive pulmonary disease from a discrete choice experiment patient preference study.

While patient input to health technology assessment (HTA) has traditionally been of a qualitative nature, there is increasing interest to integrate quantitative evidence from patient preference studies into HTA decision making. Preference data can be used to generate disease-specific health utility data. We generated a health utility score for patients with chronic obstructive pulmonary disease (COPD) and consider its use within HTAs. Based on qualitative research, six symptoms were identified as important to COPD patients: shortness of breath, exacerbations, chronic cough, mucus secretion, sleep disturbance, and urinary incontinence. We employed a discrete choice experiment (DCE) and the random parameter logistic regression technique to estimate utility scores for all COPD health states. The relationship between patients' COPD health utility scores, self-perceived COPD severity, and EQ-5D-3L utility scores was analyzed, with data stratified according to disease severity and comorbidity subgroups. The COPD health utility score had face validity, with utility scores negatively correlated with patients' self-perceived COPD severity. The correlation between the COPD health utility scores and EQ-5D-3L values was only moderate. While patient EQ-5D-3L scores were impacted by comorbidities, the COPD health utility score was less impacted by comorbid conditions. Our COPD utility measure, derived from a DCE, provides a patient-centered health utility score and is more sensitive to the COPD health of the individual and less sensitive to other comorbidities. This disease-specific instrument should be considered alongside generic health-related quality of life instruments when valuing new COPD therapies in submissions to licensing and reimbursement agencies.

Evaluating health-related quality of life in Ethiopia: systematic review and meta-analysis of EQ-5D-based studies.

Health-related quality of life (HRQoL) is crucial for understanding how health conditions impact overall well-being. The EuroQol-5 Dimension (EQ-5D) is a widely used tool for measuring HRQoL across diseases. In Ethiopia, this tool has been employed to assess HRQoL across various healthcare settings. This study aims to summarize EQ-5D-derived health outcomes in Ethiopian populations and identify key determinants influencing these outcomes. A systematic search of PubMed, Embase, and Scopus was conducted through May 2024, with no publication date restrictions, focusing on HRQoL and EQ-5D instruments in Ethiopian populations. Grey literature searches were also performed using Google's Advanced Search. Cross-sectional studies across various diseases were included. Data were extracted by two independent reviewers, and pooled mean EQ-5D utility and EQ-5D visual analog scale (EQ-VAS) scores were calculated using a random-effects model in STATA software version 17. Study quality was evaluated using the Agency for Healthcare Research and Quality (AHRQ) checklist, and heterogeneity was assessed using the I² statistic. Fourteen cross-sectional studies involving 5,639 patients from 2019 to 2024 in Ethiopia were analyzed. Health utility values varied across diseases, with pain/discomfort and anxiety/depression being the most commonly affected dimensions. The pooled EQ-5D utility for HIV patients was 0.88, and the EQ-VAS score was 76.59. For diabetes mellitus (DM) patients, the pooled utility was 0.78, and the EQ-VAS score was 69.36. For COVID-19 patients, the pooled utility was 0.86, and the EQ-VAS score was 74.56. Cancer patients had a pooled EQ-VAS score of 67.87. The EQ-5D is a reliable tool for measuring HRQoL in Ethiopian patients across various diseases. The study's pooled EQ-5D scores provide valuable insights for future economic evaluations in the Ethiopian healthcare system. https://doi.org/10.1136/bmjopen-2024-085354, PROSPERO (CRD42024505028).

Using PAH-SYMPACT to assess quality of life in patients with pulmonary hypertension associated with chronic lung disease.

Chronic lung disease (CLD) is the second leading cause of pulmonary hypertension (PH) and is associated with significant morbidity and mortality. Although PH associated with CLD (PH-CLD) leads to impaired health-related quality of life (HRQOL), there are no validated tools to assess HRQOL in PH-CLD. The Pulmonary Arterial Hypertension-Symptoms and Impact Questionnaire (PAH-SYMPACT) is an HRQOL instrument aimed at assessing the symptoms and impact of PH on overall function and well-being. We performed a single-center prospective cohort study using PAH-SYMPACT scores to compare symptoms, exercise capacity and HRQOL in patients with PAH and PH-CLD. One hundred and twenty-five patients (99 patients with idiopathic/heritable PAH and 26 with PH-CLD) completed the PAH-SYMPACT questionnaire which consists of 22 questions that assess HRQOL across four domains: cardiopulmonary (CP) symptoms, cardiovascular (CV) symptoms, physical impact (PI), and cognitive/emotional (CE) impact. Higher scores indicate worse HRQOL. We compared patients with PAH and PH-CLD using a Wilcoxon rank sum or chi-squared test as appropriate. Multivariate linear regression analysis was used to assess the relationship between PH classification and SYMPACT scores. Compared to PAH, patients with PH-CLD were older, more likely to use oxygen and had worse functional class and exercise capacity. While there was no significant difference between the two groups in CP, CV, or CE domain scores, patients with PH-CLD had significantly worse PI scores by univariate (1.79 vs. 1.13, p < 0.001) and multivariate analysis (1.61 vs. 1.17, p = 0.02) and overall worse SYMPACT scores (1.19 vs. 0.91, p = 0.03). In conclusion, patients with PH-CLD have worse HRQOL as assessed by the PAH-SYMPACT questionnaire versus patients with PAH. Although PAH-SYMPACT has not been validated in PH-CLD, the results of this study can guide clinicians in understanding the symptoms and impact of PH-CLD relative to PAH.

PROPERTI PSIKOMETRI BAHASA INDONESIA DARI KUALITAS HIDUP TERKAIT KESEHATAN TERHADAP REMAJA (KINDL-R)

Adolescence and smoking present a significant public health concern, with estimates suggesting 30% of global smokers fall within this age group. Smoking negatively impacts adolescents' daily lives across physical, psychological, and social domains, collectively known as Health-Related Quality of Life (HRQoL). This study aimed to evaluate the psychometric properties of the KINDL-R HRQoL instrument for Indonesian children and adolescents. The study involved 206 adolescents aged 14-17 years in Bandung, recruited using purposive sampling. Results of the development of the Indonesian version of the KINDL-R adaptation using Confirmatory factor analysis (validity) supported a six-dimensional model (p &lt; .05). Internal consistency reliability (reliability) was good, with Cronbach's alpha values = 0.92. Test-retest reliability was also satisfactory, with item discrimination values exceeding 0.40 for most items. These findings suggest that the KINDL-R demonstrates good reliability and validity for assessing HRQoL in Indonesian adolescents.

Health-related quality of life of premenopausal young breast cancer survivors undergoing endocrine therapy

PurposeThe incidence of breast cancer in premenopausal women in South Korea is higher compared to the West. This study aimed to identify factors associated with the health-related quality of life (HRQoL) among survivors with premenopausal young breast cancer undergoing endocrine therapy by examining the effects of menopausal symptoms, social support, and resilience on HRQoL. MethodsCross-sectional study was used to select survivors with breast cancer undergoing endocrine therapy. The study instruments used included a basic information questionnaire, Menopause Rating Scale, Multidimensional Scale of Perceived Social Support, Connor–Davidson Resilience Scale, and Health-Related Quality of Life Instrument with 8 items. Researchers utilized independent t-tests, one-way analysis of variance, Pearson's correlation coefficients, and multiple linear regression to analyze the data. The data were collected from August to September 2021, and the questionnaire was administered via a link posted on a bulletin board of an online breast cancer survivors community. Finally, 133 questionnaires were included in the final analysis. ResultsAmong 150 participants, 133 completed the questionnaires. HRQoL was higher in the groups with a monthly income of ≥5 million KRW (β = 0.231, p = .011), fewer menopausal symptoms (β = −0.399, p < .001), and higher social support (β = 0.170, p = .038), and lower in the group receiving endocrine therapy and OFS (β = −0.192, p = .010). The explanatory power for HRQoL of premenopausal young breast cancer survivors undergoing endocrine therapy was 38.3% (F = 10.634, p < .001). ConclusionBreast cancer survivors should be supported to participate in economic activity, utilize rehabilitation and intervention programs to alleviate menopausal symptoms, and benefit from a social support network formed by the hospital, community, and government.

Development and validation of a Chinese version chronic wound health-related quality of life instrument: A methodological study.

To develop a Chinese version of a chronic wound health-related quality of life (QoL) instrument and to examine the psychometric properties of this instrument. Existing QoL instruments are not tailored to the linguistic and cultural characteristics of Chinese-speaking patients; a version addressing this gap will increase clinical understanding of their healthcare experience and may help guide chronic wound care. A methodological study. The method advanced by DeVellis (2017) was used to develop the instrument. An initial pool of 38 items was created. To optimize scale length and test reliability and validity, exploratory and confirmatory factor analyses were conducted. A total of 23 items formed the final pool. After two rounds of expert discussions, the average content validity index of the final 23 items was .89. A total of 226 patients completed the instrument and were divided into two groups for further analysis. Exploratory factor analysis revealed that 15 items remained in four factors (social activity restrictions, physical and psychological disturbance, wound burden and daily life limitation), which accounted for 64.87% of the variance. Confirmatory factor analysis revealed an acceptable fit of the hypothesized factor structure and the convergent and discriminant validities were achieved. Cronbach's α coefficients for each factor were .807, .773, .799 and .713, respectively. The Chinese version of a chronic wound health-related QoL instrument consists of 15 items in four subscales and demonstrates good reliability and validity. This instrument can be used intermittently or continuously to evaluate the treatment effect of chronic wounds by assessing health-related QoL. Scholars in Chinese-speaking regions may find this culturally compatible instrument useful when conducting studies related to chronic wounds. Two hundred twenty-six participants provided their perspectives on health-related QoL.

Health-related quality of life assessment instruments for extracorporeal membrane oxygenation survivors: A scoping review.

Extracorporeal membrane oxygenation (ECMO) has been successfully and widely used in adult patients for the past 5years. About 50% of these patients can survive and are discharged from hospitals. Health-related quality of life (HRQOL) is crucial for evaluating survived ECMO patients. This scoping review aims to identify instruments commonly used to measure HRQOL of ECMO survivors and give pertinent instrument characteristics. A systematic search was conducted in PubMed, Web of Science, EMBASE (OVID), MEDLINE (OVID), CINAHL (EBSCO), Cochrane Library, and three Chinese databases from January 2012 to December 2021. Two reviewers independently reviewed publication selection and data extraction. Twenty-nine studies met the inclusion criteria. Most studies (93%) were cross-sectional, and the median (or average) follow-up time ranged from 3months to 9years. Two prospective studies (7%) followed patients longitudinally until 1year after discharge. ECMO survivors had poorer long-term HRQOL than the general population. However, it is comparable to or better than patients with other critical or chronic illnesses. Identified HRQOL assessment instruments show four generic HRQOL instruments, one disease-specific HRQOL instrument, and nineteen single-dimensional instruments. Seven instruments were used in more than three articles. SF-36 (86.2%), IES/IES-R (41.4%), and HADS (37.9%) were the most frequently used instruments. The timing, frequency, and tools for HRQOL assessment of ECMO survivors are variable. No ECMO-specific HRQOL instrument was developed and validated. Further studies on assessment instruments are warranted. Research is also needed to identify interventions that may enhance HRQOL in ECMO survivors.

Abstract 15211: Age and Improvement in Health- Related Quality of Life After Percutaneous Coronary Intervention

Background: The purpose of percutaneous coronary intervention (PCI) is to relieve chest pain, improve health-related quality of life (HRQoL), or reduce the risk of cardiac adverse events and death among patients with coronary artery disease. The aim of this study was to investigate whether age is related to HRQoL improvement in patients undergoing PCI and which clinical characteristics explain the changes in HRQoL during 12 months. Methods: Altogether 301 patients undergoing PCI were divided into three age groups: ≤65 (n=94), 66-74 (n=117), and ≥75 (n=90). Patients responded to the generic 15D and disease-specific SAQ-7 HRQoL instruments at baseline and 1 and 12 months after PCI. Results: The median ages in groups were 60, 69, and 79 years, and the proportions of women were 19.1%, 32.5%, and 35.6%, respectively. Baseline instrument scores were lower in the oldest group compared to the youngest groups (15D p &lt;0.001, SAQ-7 p =0.006). 15D and SAQ-7 improved statistically ( p &lt;0.001 for all) and clinically significantly in all groups at 1 month. At 12 months, the 15D score decreased in all groups but remained statistically and clinically higher compared to baseline in the two youngest groups, and in the oldest group, it was statistically ( p =0.005) and nearly clinically higher (threshold 0.015, Δ score 0.013, 95% CI -0.003-0.030). In the oldest group, deterioration in the 15D between 1 and 12 months was due to dimensions “mobility”, “vision”, and “excretion” but not in “cardiac-related” dimensions. Significant improvement in SAQ-7 score at one-year follow-up was observed in all groups ( p &lt;0.001 for all). The improvements in 15D and SAQ-7 scores at 12 months showed no difference between the age groups ( p =0.381). Conclusions: There was no difference in the improvement of generic or disease-specific HRQoL after PCI between the age groups. Importantly, both 15D and SAQ-7 improved equally in the oldest groups as in the younger patients.

Health Related Quality of Life in Patients with Primary ITP Compared with Population Norms: A Multicenter Retrospective Analysis of Data from Norwegian ITP Registry

Introduction: Immune thrombocytopenia (ITP) is characterized by thrombocytopenia and varying grades of bleeding manifestations. Many patients develop a fear of bleeding, which can impact their health-related quality of life (HRQoL). In addition, often necessary lifestyle adjustments as well as treatment-related side effects may further reduce HRQoL. Aims: to estimate HRQoL in adult patients diagnosed with ITP and to compare their HRQoL to that of the general population using the EuroQol-5 Dimensions-3 Levels (EQ-5D-3L) questionnaire. Methods: Data from the Norwegian ITP (NOR-ITP) Registry was used. Adult ITP patients registered in NOR-ITP from Dec 2016 to May 2023 were included in this study. Patients included in NOR-ITP complete the EQ-5D-3L questionnaire, when included in the registry and then annually as part of their scheduled follow-up. In patients who had completed several EQ-5D-3L questionnaires, the most recent one was used. The age-adjusted Norwegian EQ-5D-3L populations norms were used as reference values for Index and VAS scores. Missing data were replaced using multiple imputation. Results: Median (IQR) age of 247 patients was 57 years (34); M:F ratio = 1:1.5. ITP was newly diagnosed in 18 (7%), persistent in 14 (6%), and chronic in 215 (87%) patients. Platelet count was &amp;gt;50*10 9/L in 166 (67%) patients, between 31 and 50*10 9/L in 15 (6%), and &amp;lt; 30*10 9/L in 18 (7%), unknown for 19% (48). Thirty-nine (16%) patients were never treated for ITP, 80 (32%) patients had remission induced by glucocorticoids +/- IVIGs, and 128 (52%) were treated with second-line agents. Ongoing treatment was an immunosuppressive agent (i.e. glucocorticoids +/- IVIGs, rituximab (received during the last 3 months), azathioprine, cyclosporine-A, mycophenolate mofetil) in 43 (17%) patients, a thrombopoietin receptor agonist in 42 (17%) patients, while 162 (66%) were off-ttraetment. Median time from diagnosis of ITP to most recent EQ-5D questionnaire was 4 (10) years. Figure1a displays the frequency of reported problems (levels 2 and 3) in ITP patients compared to the population norms. ITP patients reported significantly more problems in 4 out of 5 domains. EQ-5D index score was significantly lower in ITP patients compared to the general population [Mean (SD) = 0.790 (0.23) vs 0.830 ([0.041); p-value 0.007]. Likewise, we found VAS to be significantly lower in ITP patients compared to the general population [Mean (SD) = 70.82 (21.09) vs 77.32 (5.554); p-value 0.0001). Within the ITP cohort, we found significantly lower VAS scores in ITP patients receiving ongoing treatment compared to those off treatment (p-value 0.01), as shown in figure1b. However, no significant difference was found concerning Index scores when comparing patients with ongoing to off-treatment. Comparing index scores and VAS according to platelet count category (&amp;lt;30; 31-50; &amp;gt;50*109/L) and the phase of ITP did not reveal any significant differences. Conclusion: This study is the first to evaluate HR-QoL using EQ-5D in a well-characterized cohort of patients with ITP. In line with existing evidence, using other HRQoL instruments, we found significantly reduced HRQoL in ITP patients compared to the general population. ITP patients receiving ongoing treatment had worse HRQoL compared to those off-treatment. Limitations of this study are the the long time period between diagnosis and completing the questionnaire, the observational and retrospective study design, and the lack of predictors for HRQoL.

A cross-sectional study of symptoms and health-related quality of life in menopausal-aged women in China

ObjectiveTo measure symptoms and health-related quality of life in a cross-sectional cohort of menopausal-aged women in China.MethodA cross-sectional survey was conducted in a general population cohort of 2,000 Chinese females over the age of 45 years. Patients completed the Chinese version of the EuroQol-5D five level (EQ5D5L) health-related quality of life instrument via Personal Digital Assistant. Raw scores were converted to utility tariffs using value sets for China. Statistical analysis included Pearson’s chi-square test, z test for multiple comparisons with adjustment by the Bonferroni method, independent-sample t-test, ANOVA, and adjustment by the Tukey method for multiple comparison. Results were considered statistically significant when p < 0.05 and the study was reported according to the STROBE recommendations.ResultsIn a cohort of 2000 women, 732 (37%) were premenopausal, 798 (40%) were perimenopausal and 470 (23%) were postmenopausal. Perimenopausal women reported significantly more symptoms (91%) compared to premenopausal (77%) and postmenopausal (81%) women. Health-related quality of life was significantly lower in symptomatic perimenopausal women compared to premenopausal (0.919, p < 0.05) and postmenopausal (0.877, p < 0.05) women. Within each group there was a statistically significant difference between the health-related quality of life of women with symptoms compared to without symptoms.ConclusionThe perimenopausal phase of menopause is associated with significantly more symptoms and significantly lower HRQoL compared to premenopausal and postmenopausal phases.

The Relationship between Physical Activity and Health-Related Quality of Life in Korean Adults: The Eighth Korea National Health and Nutrition Examination Survey.

This study used the raw data from the Eighth Korea National Health and Nutrition Examination Survey (KNHANES-VIII), conducted under the supervision of the Ministry of Health and Welfare and the Korea Centers for Disease Control and Prevention in 2019. It was conducted to identify a significant correlation between physical activity (PA) and health-related quality of life (HR QOL) in the Korean population. In 2019, the KNHANES-VIII added the Health-related Quality of Life Instrument with 8 items (HINT-8) to assess the HR QOL. The independent variable is related to PA, specifically the presence or absence of PA, type of PA, and the frequency of PA. The dependent variable is HR QOL, measured either as the total score or specific items (e.g., pain, vitality, and memory) using the HINT-8 measurement tool. Demographic characteristics and health status may directly or indirectly influence the relationship between PA and HR QOL, which were used as covariates. A total of 4357 participants were included in the current study. The mean HINT-8 scores were significantly higher in the participants who performed PA on a weekly basis, leisure-related PA or MSPA, as compared with those who did not (p = 0.01 and <0.0001, respectively). In both the unadjusted and adjusted models, the mean HINT-8 scores were significantly higher in the participants who performed ≥500 MET-min/week of leisure-related PA as compared with those who did not (95% CI: 1.017-1.033; p < 0.001 and 95% CI: 1.005-1.02; p = 0.001, respectively). In both the unadjusted and adjusted models, the mean HINT-8 scores were significantly higher (95% CI: 1.015-1.03; p < 0.001 and 95% CI: 1.004-1.018; p = 0.003, respectively) in the participants who performed MSPA for ≥2 days/week as compared with those who did not. The current results confirmed that there is a significant positive correlation between the PA and HR QOL based on the HINT-8 scores. Because the HINT-8 was developed to assess the HR QOL in Koreans, however, further studies are warranted to evaluate its applicability to other ethnic populations.

The need of a proof-of-concept in artificial intelligence-based health-related quality of life instruments in veterinary medicine

The current state of the art of health-related quality of life (HRQoL) and quality of life in the animal health industry highlights the limitations of existing methodologies and the potential of artificial intelligence (AI) to overcome these limitations. AI has the potential to revolutionize many aspects of healthcare, including HRQoL assessment, leading to more efficient and accurate measurement and personalized medicine. AI in psychometrics can improve cognitive and behavioral assessments and lead to new insights into animal reactions and perceptions. A proof of concept (POC) study is used to assess the feasibility of an AI-based solution. In the next decade, AI-based HRQoL instruments in veterinary medicine are expected to emerge and become widely distributed, making them easily accessible for practical use in daily practice.

Quality of life measurement in teledermatology. Position statement of the European Academy of Dermatology and Venereology TaskForces on Quality of Life and Patient Oriented Outcomes and Teledermatology.

Many events, including the COVID-19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient-oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health-related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face-to-face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face-to-face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology-specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease-specific instruments.

SAT288 Development Of CAH-specific Patient Reported Outcome (PRO) Instrument To Assess Health-related Quality Of Life (HRQoL)

Abstract Disclosure: M.E. Flokas: None. L. Yang: None. K. Middleton: None. R.W. Persky: None. S. Kollender: None. M. Parker: None. D.P. Merke: Grant Recipient; Self; Diurnal, received unrelated research funds through the National Institutes of Health Cooperative Research and Development Agreement., D.P.M. received unrelated research funds from Neurocrine Biosciences through the National Institutes of Health Cooperative Research and Development Agreement. Objectives: Measuring health-related quality of life (HRQoL) is a crucial and often required process of evaluating health care outcomes. The aim of our study is to develop a disease-specific patient reported outcome (PRO) instrument to evaluate the HRQoL of patients &amp;gt;16 years old with classic congenital adrenal hyperplasia (CAH). Methods: Following the FDA guidelines for developing PRO instruments, we developed a conceptual framework for the instrument. The process involved interviewing a representative sample of the CAH population and along with expert feedback and review of the literature. We are assessing the instruments’ validity and reliability with the assistance of patient participation. Internal consistency of the instrument is being evaluated using Cronbach’s alpha. We are also assessing the validity by comparing the scores of our instrument with scores from widely used instruments for HRQoL namely, Short Form Health Survey-36 (SF-36), AddiQol, Tuebingen CD-25 and Female Sexual Functioning Index. Furthermore, we collected data regarding the clinical outcomes, symptoms and patient characteristics to investigate the correlation between patient-reported and provider- observed outcomes. Results: Twelve patients with CAH, aged between 16 to 68 years old were interviewed and provided insight on the CAH - related health outcomes that were most relevant to them. A preliminary instrument was developed and subjected to validity testing in the form of cognitive interviewing. The edited instrument consisting of 73 questions covering 9 preliminary domains (General Health, Adrenal Insufficiency, Glucocorticoid Excess, Androgen Excess, Physical Functioning, Sexual Functioning and Fertility, Mental Health and Cognition, Social Functioning and CAH Management). Sixty-nine participants aged 16 to 75 years old participated in validating our preliminary instrument. Forty- six participants (67%) had salt-wasting CAH while 23 (33%) had simple virilizing CAH. Fifty-one percent of participants identified as male, 46% female, while 3% as other gender. Preliminary results show mostly acceptable (&amp;gt;0.7) Cronbach’s alpha, showing reliability in most domains. Further data analysis is underway. Conclusion: This is the first PRO instrument to capture the HRQoL outcomes in the CAH population. In addition to its anticipated use in the clinical setting, the instrument could be used to assess the efficacy of novel treatments in development. The final instrument is currently under development. Presentation: Saturday, June 17, 2023

Psychometric Evaluation of the PedsQL GCS and CHU9D in Australian Children and Adolescents with Common Chronic Health Conditions.

Generic instruments such as the Pediatric Quality of Life Inventory™ v4.0 Generic Core Scales (PedsQL GCS) and Child Health Utility 9D (CHU9D) are widely used to assess health-related quality of life (HRQOL) of the general childhood population, but there is a paucity of information about their psychometric properties in children with specific health conditions. This study assessed psychometric properties, including acceptability, reliability, validity, and responsiveness, of the PedsQL GCS and the CHU9D in children and adolescents with a range of common chronic health problems. We used data from the Longitudinal Study of Australian Children (LSAC), for children aged 10-17 years with at least one of the following six parent-reported health conditions: asthma, anxiety/depression, attention deficit hyperactivity disorder (ADHD), autism/Asperger's, epilepsy, and type 1 diabetes mellitus. The LSAC used parent proxy-reported PedsQL GCS and child self-reported CHU9D assessments. The performance of each instrument (PedsQL GCS and CHU9D) for each psychometric property (acceptability, reliability, validity, and responsiveness) was assessed against established criteria. The study sample included 7201 children and adolescents (mean age = 14 years; range 10.1-17.9 years; 49% female) with 15,568 longitudinal observations available for analyses. Across the six health conditions, acceptability of the PedsQL GCS was high, while acceptability for the CHU9D was mixed. Both the PedsQL GCS and CHU9D showed strong internal consistency (Cronbach's alpha range: PedsQL GCS = 0.70-0.95, CHU9D = 0.76-0.84; item-total correlations range: PedsQL GCS = 0.35-0.84, CHU9D = 0.32-0.70). However, convergent validity for both the PedsQL GCS and CHU9D was generally weak (Spearman's correlations ≤ 0.3). Known group validity was strong for the PedsQL GCS (HRQOL differences were detected for children with and without asthma, anxiety/depression, ADHD, autism/Asperger's, and epilepsy). CHU9D was only able to discriminate between children with and without anxiety/depression, ADHD, and autism/Asperger's. The responsiveness of both the PedsQL GCS and CHU9D was variable across the six conditions, and most of the estimated effect sizes were relatively small (<0.5). This study expands the evidence base of psychometric performance of the PedsQL GCS and CHU9D and can aid in appropriate HRQOL instrument selection for the required context by researchers and clinicians.

Prospective Comparative Study of Quality of Life in Bladder Cancer Patients Undergoing Cystectomy or Bladder Preservation

Health-related Quality of life (HRQOL) may be decisive when different treatments yield comparable survival outcomes. We compared QOL in patients undergoing radical cystectomy with ileal conduit (RCIC) or bladder preservation (BP) with (chemo)radiotherapy for bladder cancer. Patients with histological diagnosis of bladder cancer, stage T1-T4, N0-N1, M0 with a minimum follow-up of 6 months from the last treatment intervention (RCIC or BP) and alive without disease at the time of QOL assessment were eligible for inclusion. After ethics committee approval, two HRQOL instruments were translated, validated and administered: Bladder cancer index (BCI) for bladder cancer-specific HRQOL, which includes 36 items under three domains - bladder, bowel and sexual function and the EORTC QLQ C30 which includes 30 items under three domains - functional, symptom and global health. The mean QOL scores across various domains and specific questions were compared between the two treatment groups using the independent t-test. Of the 104 patients enrolled, 56 had RCIC, and 48 received BP, and included 95 (91.3%) males. The median time from treatment completion to QOL assessment was 22 months (IQR 10-56). The median age for the entire cohort was 62 years (IQR 55-68), 65.5 years (IQR 55-71) in BP and 59.5 years (IQR 55-66) in RCIC. Overall, mean BCI urinary scores and bowel scores were high in both groups, with no significant difference in function or bother subdomains between the two groups (Table 1). Overall, BCI sexual scores were low in both the groups but significantly better after BP (BPmean 56.9, RCICmean 41.5, p = 0.01). Mean scores for sexual function BPmean 38.4 and RCIC mean 25 p (0.07) and sexual bother BPmean 81 RCICmean 62 (p 0.02) subdomains. There was no significant difference in EORTC QOL outcomes in functional (BPmean 91.4, RCICmean 88.7 p 0.23), symptom (BPmean 89.8, RCICmean 89, p = 0.68) and global health scale (BPmean 76.8, RCICmean 78.5, p = 0.69) in both groups. On question-wise assessment, the ability to perform an exercise (BPmean 94.2, RCICmean 85, p = 0.06) and urinary leakage at night time (BPmean 91.7, RCICmean 77.6, p = 0.01) were better in the BP group, while scores for blood in the urine (BPmean 89.1, RCICmean 97, p = 0.05) were better in the RCIC group compared to BP. Overall, QOL was good in both groups in the urinary and bowel domains while it was low in the sexual domain. However, bladder preservation performed significantly better in the sexual domain than RCIC.