Health-related Quality Of Life Instruments Research Articles

Health-related Quality of Life in Jack Jumper Ant venom Allergy: Validation of the “Venom-Allergy Quality of Life Questionnaire” VQLQ

Assessment of health-related quality of life (HRQoL) in patients with allergy to the venom of the Jack Jumper Ant (JJA), Myrmecia pilosula - a Hymenoptera order species native and endemic to the South-Eastern quarter of Australia. This has not previously been studied, despite an estimated population prevalence of generalised allergic symptoms as high as 3% in some areas. To validate the VQLQ HRQoL instrument - previously validated in wasp and bee venom allergic patients - for use in this specific ant venom-allergic population. The 14-item VQLQ survey instrument was administered to patients with clinical allergy to JJA venom presenting at the state treatment centre for venom-immunotherapy. Surveys were performed at different time points of the progression through visits for venom immunotherapy treatment. Cross-sectional and longitudinal validation was performed against 'expectation of outcome'(EO) questionnaire by determining correlation and agreement. 271 individuals contributed survey data, comprising a median age of 52 years (3-85) with a bimodal distribution, with 25% being < 18 years of age. Internal consistency was excellent, with a Cronbach of 0.95. Cross-sectional validity was demonstrated with a positive correlation VQLQ to EO of 0.44 (p < 0.001). Performance was nearly identical when stratified into adults and children(<18 yo). Longitudinal Validity was suggested as both VQLQ and EO improved over time in both adults and children, but this only had paired correlation at two time points in adults. Bland-Altman analysis demonstrated an acceptable agreement between VQLQ and EO and no evidence of systematic bias. The VQLQ appears to offer similar performance of HRQoL measurement in patients suffering from JJA venom allergy, as has previously been demonstrated in other Hymenoptera species. In addition, this is the first study to demonstrate cross-sectional validity specifically in a paediatric population 3-18 years of age.

Quality of life, physical symptoms, and psychological symptoms according to the status of chronic vestibulopathy.

Symptomatic vestibulopathy impairs patients' lives. However, few studies have explored the lives of patients with compensated or asymptomatic vestibulopathy. This study investigated the quality of life (QOL), psychological health, and physical function of patients with vestibulopathy. Using the eighth Korea National Health and Nutrition Examination Survey database, we included individuals with data on demographic factors, diabetes, hypertension, dizziness experiences, pure-tone audiometry, video head impulse test (vHIT), Health-related Quality of Life Instrument with 8 Items, General Anxiety Disorder 7-item scale, stress, and walking and sitting times. Participants were classified into the following groups: an uncompensated group with abnormal vHIT result and chronic dizziness, a compensated group with abnormal vHIT result and a history of dizziness, an asymptomatic group with abnormal vHIT result and no history of dizziness, and a normal group without abnormal vHIT result or a history of dizziness. Uncompensated vestibulopathy was more common in older individuals and women. The uncompensated group showed impairments in climbing stairs (P < 0.001), pain (P < 0.001), vitality (P = 0.001), working (P < 0.001), depression (P < 0.001), sleep (P = 0.001), happiness (P = 0.002), anxiety (P = 0.006), and stress (P = 0.003). The compensated group showed deficits in pain (P < 0.001), work (P = 0.006), sleep (P = 0.001), and happiness (P = 0.001). The asymptomatic group had no deficits in QOL, psychological health, or physical function. These tendencies were similar after controlling for age and gender. Vestibulopathy with a history of dizziness has a long-lasting impact on QOL and emotional status, even after compensation. Uncompensated vestibulopathy has a significant effect on QOL and mental health. Notably, though, the compensated group also showed a reduction in QOL. Appropriate interventions for each category of patients should be provided based on their impaired functions.

A systematic review and meta-analysis of health-related quality of life (HRQoL) outcomes in randomised controlled trials for pulmonary arterial hypertension (PAH)

Abstract Introduction ESC guidelines recognise the under use of disease-specific health-related quality of life (HRQoL) instruments. These include CAMPHOR, PAH-SYMPACT, Emphasis-10 and Living with Pulmonary Hypertension (LPH). Patients highly value HRQoL as a treatment outcome in PAH. This is the first meta-analysis to evaluate HRQoL instruments and outcomes in RCTs in pulmonary arterial hypertension (PAH). Purpose To evaluate which PAH-RCT interventions improve HRQoL outcomes and compare the suitability of HRQoL instruments used. Method We searched MEDLINE (Jan 1970 to Dec 2023) and Cochrane Library from Jan 1990 to Dec 2023 (EMBASE, CT.gov, ICTRP, CINAHL) for RCTs in PAH. Abstracts and unpublished studies were excluded and PRISMA reporting structure followed. Trials meeting final selection criteria included HRQoL instruments sufficiently powered to detect a minimal clinically important difference (MCID). Effective sample sizes were calculated in GPower3.1 from a two independent means model for 80% power, 5% significance, one-tailed test. Meta-analysis was performed in SPSSv28.1. Full search criteria are registered on PROSPERO (ID: CRD42024484021). Results After removal of duplicates, 896 records were screened, 43 studies included a HRQoL endpoint. 8 studies were included in the meta-analysis after exclusion for insufficient data (n=10) or power (n=25). 3 of these did not meet the MCID (&amp;gt;33m) for six-minute walk distance (6MWD) and evaluated separately to discriminate accuracy of HRQoL instrument. Instruments available for comparison were Short Form-36(SF-36), EuroQol (EQ-5D-5L) and Living with Pulmonary Hypertension (LPH). Studies not reaching MCID for 6MWD also showed no change in HRQoL (figure 1). Ambrisentan and exercise training demonstrate a significant improvement (p&amp;lt;0.05) in SF-36 physical(P) component (figure 2). This component was anchored to determine 6MWD MCID; other HRQoL values responded variably. Utility weighting to account for geographical variation was not reported with EQ-5D-5L and SF-36 in multicentre studies however AIR 2002 (Iloprost) was significant for both EQ-5D-5L instruments. The total component score of the disease-specific LPH was more sensitive to functional improvements and overall change in HRQoL compared to EQ-5D-5L (p&amp;lt;0.05). Conclusion Fewer than 10% of all RCTs in PAH have adequately considered a HRQoL outcome measure. 8 RCTs were powered to assess HRQoL. Iloprost, ambrisentan, riociguat and exercise training interventions demonstrate significant improvement in HRQoL. LPH was the only PAH-instrument powered to detect change. LPH was more sensitive to HRQoL than generic instruments and is multidimensional. Geographical indexing should be considered for generic instruments such as EQ-5D-5L and SF-36 in multicentre trials. As a highly valued outcome for patients, future studies should prioritise HRQoL as an endpoint.Figure 1Figure 2

Sex-related differences in health-related quality-of-life measured using the EuroQol 5-Dimension questionnaire across the LVEF spectrum in DAPA-HF and DELIVER

Abstract Background Although sex-related differences in response to disease-specific health-related quality-of-life (HRQL) instruments such as the KCCQ have been investigated in patients with heart failure (HF), this is not the case for generic HRQL instruments. Purpose To assess the sex-specific differences in health status measured using the EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) in patients with HF with reduced and mildly reduced or preserved ejection fraction (HFrEF and HFmrEF/HFpEF), and to assess the effect of dapagliflozin on EQ-5D-5L index scores. Methods Using patient-level data from the DAPA-HF and DELIVER trials comparing dapagliflozin to placebo, we analysed patient-reported outcomes for each dimension of the EQ-5D index scores between men and women. The 5 dimensions of the descriptive section of the EQ-5D-5L include mobility ("walking around"), self-care ("washing or dressing self"), usual activities ("e.g., work, study, housework, family or leisure activities"), pain/discomfort ("pain or discomfort"), and anxiety/depression ("anxious or depressed"). Each dimension is divided into 5 levels (1-5) i.e., no problem, slight problem, moderate problem, severe problem, and extreme problem (cannot do activity/extreme symptom). Results Of 4744 patients with HFrEF, 4390 completed the EQ-5D-5L index scores (3408 men and 982 women, 77.6% vs. 22.4%). The correresponding numbes in 6263 patients with HFmrEF/HFpEF were 5745 overall and 3320 men vs. 2425 women (57.8% vs. 42.2%). Regardless of HF phenotype, women had significantly worse (lower) baseline index scores overall compared to men (0.849 vs. 0.899 in HFrEF and 0.844 vs. 0.884 in HFmrEF/HFpEF, both p&amp;lt;0.001). Although scores varied markedly by question, women generally had worse health status in all the dimensions as compared with men in patients with HFrEF (39% vs. 29% reporting a moderate or greater problem for mobility, 17% vs. 9% for self-care, 36% vs. 25% for usual activities, 29% vs. 19% for pain/discomfort, and 21% vs. 13% for anxiety/depression, all p&amp;lt;0.001) (Figure, top panel). A broadly similar pattern was observed in HFmrEF/HFpEF (Figure, bottom panel). In all patients, across the range of LVEF, there dapagliflozin led to a significant placebo corrected increase (improvement) in index score (0.008, 95% CI 0.002 to 0.014), with no interaction between sex and the effect of dapagliflozin (p for interaction with sex = 0.50). Conclusions Women reported significantly poorer health status in both HFrEF and HFmrEF/HFpEF compared to men. Dapagliflozin treatment improved EQ-5D index scores irrespective of sex across the range of ejection fraction. Figure Sex differences in the distribution of responses to EQ-5D-5L questionnaire. EQ-5D-5L, EuroQol 5-Dimension 5-Level questionnaire; HFmrEF, heart failure with mildly reduced ejection fraction; HFpEF, heart failure with preserved ejection fraction; HFrEF, heart failure with reduced ejection fraction.

Improvement in Health-Related Quality of Life and Symptoms Following Lipedema Liposuction: A Longitudinal Study.

Lipedema is a chronic fat disorder characterized by disproportionate fat deposition in the lower limbs, leading to pain, mobility issues and reduced health related quality of life (HRQoL).There is growing evidence that liposuction of the excess fat not only reduces soft tissue pain but also improves HRQoL. The published data, however, remain limited, and there are no studies of liposuction in the UK lipedema population. This study aimed to evaluate the effectiveness of liposuction on HRQoL and symptoms in UK lipedema patients using 2 HRQoL instruments and a Lipedema Symptom Scale. Lipedema patients undergoing liposuction between January 2016 and December 2021 completed Short-Form Health Survey (SF-36), World Health Organization Quality-of-Life Assessment (WHOQOL-BREF), and 17-question Lipedema Symptom Scale preoperatively and postoperatively. Paired t test was used to compare the preoperative and postoperative mean scores of the different domains of the SF-36 and WHOQOL-BREF and preoperative and postoperative mean scores for the lipedema symptom scale. Paired t test was also used to compare preoperative and postoperative SF-36 scores to age-matched normative data for the English population to assess the extent of HRQoL improvement relative to the general population. Seventy-six women were included in the study with a mean age of 46.4 ± 12 years. Mean follow-up (interval between first liposuction surgery and postoperative completion of the instruments) was 25.3 ± 23.2 months. There was significant improvement in all SF-36 and WHOQOL-BREF domains postoperatively (P < 0.001). Compared with age-matched normative data, postoperative SF-36 scores remained lower in physical functioning, social functioning, and general health. Postoperative results also showed a highly significant improvement (P < 0.001) across all 17 items of the Lipedema Symptom Scale. This longitudinal study indicates liposuction is an effective treatment for improving HRQoL and symptoms in lipedema patients, although it may not completely restore HRQoL to normative levels. Limitations include potential selection bias, sampling bias, and the need for longer follow-up. The findings support liposuction as a first-line treatment for lipedema and could inform decision-making for both patients and policymakers.

Deriving the PedsUtil health state classification system to measure health utilities for pediatric populations based on the PedsQL: a confirmatory factor analysis.

An important methodological challenge in conducting pediatric economic evaluations is estimating the preference-based health-related quality of life (HRQoL) of children. Current methods are highly variable and there is no single instrument available to value HRQoL consistently across multiple pediatric age groups. The Pediatric Quality of Life Inventory (PedsQL) is a non-preference-based generic HRQoL instrument validated for children 2-18 years, but it cannot be directly used in economic evaluations. The aim of this study was to establish the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis, which is the first step of deriving a preference-based measure of HRQoL based on the PedsQL. Four competing dimension structures of the PedsUtil health state classification system were developed based on published literature and expert opinion. Using data from the Longitudinal Study of Australian Children (LSAC) (n = 45,207), the 4 dimension structures were evaluated using the robust weighted least squares estimation method. The analyses were stratified by 2-year age intervals (from 2 to 17 years) to reflect the study design of the LSAC, as well as special healthcare needs status of the child. Model fit was evaluated by examining standardized factor loadings and various fit indices including the comparative fit index (CFI), Tucker-Lewis Index (TLI), and the root mean square error of approximation (RMSEA). Modification indices and residual correlations were examined to re-specify the models to improve model fit when necessary. The findings supported a 7-dimension structure (i.e., Physical Functioning, Pain, Fatigue, Emotional Functioning, Social Functioning, School Functioning, and School Absence) of the PedsUtil health state classification system. The 7-dimension model exhibited adequate fit across subgroups with CFI values that ranged from 0.929 to 0.954, TLI values from 0.916 to 0.946, and RMSEA values from 0.058 to 0.102. This study established the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis. The 7-dimension structure was found to be applicable across diverse pediatric populations. Research is currently ongoing to select the most representative item within each dimension of the PedsUtil health state classification system and valuation surveys will be fielded to estimate the PedsUtil scoring system.

Health-related quality of life assessment in health economic analyses involving type 2 diabetes.

Incorporating health-related quality of life (HRQoL) measures into health economic analyses can help to provide evidence to inform decisions about how to improve patient outcomes in the most cost-effective manner. The aim of this narrative review was to assess which HRQoL instruments have been used in economic evaluations of type 2 diabetes management including in Indigenous communities. MEDLINE (Ovid), Embase (Ovid) and Cochrane were searched from inception to June 2022. Studies included patients with type 2 diabetes; economic evaluations, derived scores from direct questioning of individuals; and were in English. Records were assessed for bias using the JBI critical appraisal tools. A total of 3737 records were identified, with 22 publications meeting the criteria for inclusion. Across those 22 articles, nine HRQoL instruments had been utilised. Generic tools were most frequently used to measure HRQoL, including EQ-5D (-3 L and -5 L) (n = 10, 38%); SF-12 (n = 5, 19%); and SF-36 (n = 4, 15%). Two tools addressing the specific stressors faced by people with type 2 diabetes were utilised: Problem Areas In Diabetes tool (n = 1, 4%) and Diabetes Distress Scale (n = 1, 4%). Two publications reported whether the study population included Indigenous peoples. A wide range of HRQoL instruments are used in economic evaluations of type 2 diabetes management, with the most frequent being varying forms of the EQ-5D. Few economic evaluations noted whether Indigenous peoples were featured in the study population. More research into HRQoL in people living with type 2 diabetes is urgently needed to improve evidence on effectiveness and cost-effectiveness of interventions.

The impact of basal cell carcinoma on the quality-of-life in older patients

Basal cell carcinoma (BCC) is the most frequent malignant tumour worldwide and incidences are rising rapidly. BCC grow locally, but can invade surrounding tissues. Little is known concerning their impact on the health-related quality of life (HrQoL), and limited available data reports contradicting results. Measuring HrQoL in BCC patients should be done using disease-specific questionnaires such as the Basal and Squamous cell carcinoma Quality of Life (BaSQoL) questionnaire. The aim of this study was to assess the BCC-related HrQoL by examining all relevant patient, tumour and treatment characteristics to identify the main factors for the BCC-related impact. Specific attention for older BCC patients wass brought forward because of the often complex decisions in this subgroup. Patients ≥ 18 years with a history of BCC were asked to fill in the BaSQoL questionnaire, consisting of 5 subdomains. Multivariable analyses were done using a generalized additive model (GAM) because of the need for incorporation of non-linear functions. The study obtained approval of the Ethics Committee of the Ghent University Hospital (EC/2019/1352). Informed consent was obtained from all subjects. All experiments were performed in accordance with relevant guidelines and regulations. Four hundred patients with a median age of 66 were enrolled. Mean BaSQoL subscores were 0.78 (SD 0.63) for ‘behaviour’, 1.01 (SD 0.73) for ‘diagnosis&treatment’, 0.90 (SD 0.73) for ‘worries’, 0.40 (SD 0.63) for ‘appearance’ and 1.20 (SD 0.75) for ‘other people’, illustrating the low to moderate impact of BCC on the HrQoL. A GAM with subsequent ANOVA testing was done for all relevant variables. In 4 out of 5 BaSQoL subdomains ‘age’ showed a significant correlation (‘behaviour’ p = 0.007; ‘diagnosis&treatment’ p = 0.026; ‘worries’ p = 0.003; ‘appearance’ p = 0.008). Lower BaSQoL scores were seen in older patients, meaning less BCC-impact on their HrQoL. There was a clear non-linear correlation between BaSQoL scores and age, illustrating that the impact of BCC on the HrQoL shows a rapid decrease starting around the age of 70. This study is the first to illustrate the relation between the BCC-related HrQoL and the age of patients with the use of a disease-specific HrQoL instrument. We found a lower BaSQoL score in older adults, with a specific age group of interest starting around the age of 70–75. This is an argument for a potential wait-and-see strategy for BCC in these patients.

Telephone Counseling for Children Recovering from Tonsil Surgery-A Randomized Controlled Feasibility Study.

Even though children after tonsil surgery experience pain and other limitations in their daily lives, nursing care is transferred to parents after tonsil surgery, and they might need some kind of support. The aim of the study was to test the design of a randomized controlled trial intended to evaluate a nurse-led telephone follow-up after tonsil surgery on postoperative symptoms and quality of life. Of the seventeen children aged 3-17 years scheduled to tonsil surgery, nine were randomized to the intervention group and eight to the control group using a randomization list. The parents in the intervention group were contacted by telephone on days 1, 3, 5, and 10 postoperatively for counseling by a nurse. The instruments Postoperative Recovery in Children (PRiC) and the health-related quality of life instrument (EQ-5 D-Y) were used to evaluate postoperative symptoms and quality of life, respectively. Eight participants in the intervention group reported throat pain compared to five participants in the control group on the operation day and four days after, possibly due to an uneven distribution of the type of surgery between the study groups. The parents appreciated the telephone counseling, and there were no unplanned revisits in the intervention group. However, it was difficult to recruit participants and the assessment tools were not always fully completed. No explicit conclusions can be drawn from this feasibility study due to the low number of participants and the study design needs adjustments.

Anxiety and disease awareness in individuals with heredity for abdominal aortic aneurysm.

The psychological consequences of being aware of an increased risk of developing abdominal aortic aneurysm as a first-degree relative of a person with abdominal aortic aneurysm are hitherto unexplored. This study investigates the awareness of heritability and anxiety in male and female adult offspring of abdominal aortic aneurysm patients compared to controls. Health-related quality of life among participants with aortic pathology was compared to participants with normal aortic diameters. This was a cross-sectional point prevalence study based on the participants examined in the Detecting Abdominal Aortic Aneurysm in First Degree Relatives Trial (DAAAD; 752 adult offspring, 756 matched controls), 2020-2022. Questionnaires about health-related quality of life and study-specific questions regarding awareness of heritability were collected prior to the aortic ultrasound. Attendance rate was higher among individuals with heredity compared to controls (67% vs. 52%, p < 0.001). Of 1508 adult offspring examined, 65% reported having a close relative with abdominal aortic aneurysm (6% in controls). Female adult offspring reported higher awareness of heritability than controls (38% vs. 12%, p < 0.001), as did males (32% vs. 8%, p < 0.001). A slight majority of participants with awareness reported anxiety (54% of female offspring; 51% of male). There were no measured differences in health-related quality of life between the groups when standard health-related quality of life instruments were used. The higher-than-expected proportion of adult offspring with awareness of heritability and anxiety about such risk indicates that we fail to communicate risk to this group appropriately via the current channels of information within the healthcare system. This calls for the development of dedicated strategies for improved communication of abdominal aortic aneurysm risk to patients and their next of kin.

Prospective comparative study of quality of life in patients with bladder cancer undergoing cystectomy with ileal conduit or bladder preservation

ObjectiveTo compare health-related quality of life (HRQOL) in patients undergoing radical cystectomy with ileal conduit (RC) or bladder preservation (BP) with (chemo)radiotherapy for bladder cancer.Methods and analysisPatients with bladder cancer,...

Depressive symptoms, functional impairment, and health-related quality of life in idiopathic normal pressure hydrocephalus: A population-based study.

Maximising quality of life is a central goal for all healthcare, especially when dealing with dementing disorders. In this study we aimed to compare health-related quality of life (HRQoL), depressive symptoms and functional impairment between individuals with and without idiopathic normal pressure hydrocephalus (iNPH) from the general population. A total of 122 individuals, 30 with iNPH (median age 75 years, 67 females) underwent neurological examinations and computed tomography of the brain with standardised rating of imaging findings and clinical symptoms. The participants completed the Geriatric Depression Scale (GDS-15) and the HRQoL instrument EQ5D-5L. In addition, the modified Rankin Scale (mRS) was used to evaluate functional impairment. Compared with participants without iNPH, those with iNPH reported a higher score on GDS-15 (median 3 vs 1) and mRS (median 2 vs 1) (p < 0.05). Further, those with iNPH rated lower on EQ5D-5L (index 0.79, VAS 70) than those without iNPH (index 0.86, VAS 80) (p < 0.05). In logistic regression models, low HRQoL was associated with more depressive symptoms, a higher degree of iNPH symptoms, and lower functional status. In this population-based sample, those with iNPH had more depressive symptoms, lower functional status, and worse quality of life compared to those without iNPH. The strongest association with low HRQoL was found for depressive symptoms, functional level, and degree of iNPH symptoms. These results underline the value of shunt surgery because of its potential to reduce symptoms and disability in iNPH and therefore improve HRQoL.

Selecting PedsQL items to derive the PedsUtil health state classification system to measure health utilities in children

BackgroundThere is a lack of preference-based health-related quality of life (HRQoL) measures that consistently value health across a full range of child age groups. The PedsQL is a generic HRQoL instrument validated for children 2–18 years, but it is not preference-based. The objective of this study was to derive the PedsUtil health state classification system from the PedsQL as a basis for a preference-based HRQoL measure for children.MethodsA two-step process was used to select PedsQL items to include in the health state classification system: 1) exclude poorly functioning items according to Rasch analysis in each of the previously established seven dimensions of the PedsUtil health state classification system and 2) select a single item to represent each dimension based on Rasch and psychometric analyses, as well as input from child health experts and parents. All secondary analyses were conducted using data from the Longitudinal Study of Australian Children (LSAC). Analyses were stratified by age group (i.e., 2–5 years, 6–13 years, and 14–17 years) to represent the different developmental stages of children and to reflect the study design of the LSAC. Rasch analyses were also performed on five random subsamples for each age group to enhance robustness of results.ResultsTwelve items were excluded from the PedsUtil health state classification system after the first step of the item selection process. An additional four items were excluded in the second step, resulting in seven items that were selected to represent the seven dimensions of the PedsUtil health state classification system: Physical Functioning (“participating in sports activity or exercise”), Pain (“having hurts or aches”), Fatigue (“low energy level”), Emotional Functioning (“worrying about what will happen to them”), Social Functioning (“other kids not wanting to be their friend”), School Functioning (“keeping up with schoolwork”), and School Absence (“missing school because of not feeling well”).ConclusionsThe PedsUtil health state classification system was derived from the PedsQL based on several criteria and was constructed to be applicable to children two years and older. Research is ongoing to elicit preferences for the PedsUtil health state classification system to construct the PedsUtil scoring system.

Mapping the Lequesne Functional Index Into the EQ-5D-5L Utility Index in Patients With Knee Osteoarthritis

ObjectiveThis study aimed to map the Lequesne index onto the EuroQol 5 Dimension (EQ-5D-5L) utility index for patients with knee osteoarthritis. MethodsBaseline data from a previous randomized controlled trial were used; 461 patients were involved in the mapping development, and 230 in the validation phase. Various modeling techniques, including generalized linear models, tobit, and beta regression, were used. Factors such as age, sex, and body mass index were considered as covariates. Model selection was based on criteria such as Akaike and Bayesian information criteria, adjusted R2, mean absolute error, and root mean squared error. Validation involved assessing the preselected models using mean absolute error, root mean squared error, and intraclass correlation coefficient. This study follows the Mapping Onto Preference-Based Measures Reporting Standards statement. ResultsFive models were developed, with 2 incorporating age, sex, with or without body mass index along with the Lequesne index showing the best fit across regressions. Validation results were similar for the 3 regressions, with beta regression models exhibiting wider ranges closer to the validation data set. Intraclass correlation coefficient values were better for beta regression models. Both models tended to overpredict for lower EQ-5D-5L values and underpredict for better health status. ConclusionThese mapping functions, the first of their kind, effectively translate the Lequesne index to EQ-5D-5L values in patients with knee osteoarthritis. They demonstrate satisfactory fit and precision, providing valuable tools for clinicians and researchers, particularly in situations where generic preference-based health-related quality of life instruments are inaccessible for utility derivation in cost-effectiveness studies.

Quality of life measurement in assessing treatment effectiveness in urticaria: European experts position statement.

In this study, the European Academy of Dermatology and Venereology (EADV) Task Forces on Quality of Life and Patient-Oriented Outcomes and Urticaria and Angioedema has examined the Health-Related Quality of Life (HRQoL) measurement in the treatment of urticaria. The Dermatology Life Quality Index was the most frequently used HRQoL instrument in clinical trials on urticaria. Many reports of clinical trials of urticaria gave no exact numeric results related to HRQoL changes, making clear conclusions and comparisons with other studies impossible. The interpretation of HRQoL impairment data is more difficult when assessed by instruments without severity stratification systems. The minimal clinically significant difference (MCID) is a more clinically oriented and relevant parameter than depending on statistically significant changes in HRQoL scores. Therefore, using HRQoL instruments with established MCID data in clinical trials and clinical practice is preferred.

The Impact of Symptomatic Chronic Venous Insufficiency (CVI) on Health-Related Quality of Life (HR Qol) in A Multi-Ethnics Society in a Developing Nation

INTRODUCTION: Chronic venous insufficiency (CVI) is a common condition especially among those of advance age that is often neglected. As the disease severity progresses, it increases the healthcare cost and resources required, while diminishing the quality of life of the persons. Health-related Quality of Life (HRQoL) among CVI patients begins to decline once the symptom starts to appear, and reduces it further as the symptoms worsens. MATERIALS AND METHODS: This is a prospective, multi-centred, cross-sectional study on consenting symptomatic CVI patients who presented to the International Islamic University of Malaysia (IIUM) teaching hospital in Pahang, Malaysia. The diagnosis of CVI was confirmed on duplex imaging. Clinical grading was performed using Clinical Etiologic Anatomic Pathophysiologic (CEAP) classification. Patients completed generic validated Malay language Short Form 36 (SF36) HRQoL instrument. RESULTS: One hundred and ten patients (62% male) with a mean age of 57 years, Malays (60%), Chinese (25%) and Indian (15%) were recruited. The most frequent CVD symptoms reported were pain (42%). The clinical, aetiological, anatomical, and pathophysiological (CEAP) classification placed most patients in the C2 class (34%). Apart from partaking in social functions, all other elements of mental and physical health component of SF 36 showed a marked deterioration as the disease progressed. CONCLUSIONS: We found a significant decline in the HRQoL among symptomatic CVI patients presenting to IIUM hospital in a multi-ethnic developing country.

Quality of life gains in frail and intermediate-fit patients with multiple Myeloma: Findings from the prospective HOVON123 clinical trial

BackgroundFrailty in newly-diagnosed multiple myeloma (NDMM) patients is associated with treatment-related toxicity, which negatively affects health-related quality of life (HRQoL). Currently, data on changes in HRQoL of frail and intermediate-fit MM patients during active treatment and post-treatment follow-up are absent. MethodsThe HOVON123 study (NTR4244) was a phase II trial in which NDMM patients ≥ 75 years were treated with nine dose-adjusted cycles of Melphalan-Prednisone-Bortezomib (MPV). Two HRQoL instruments (EORTC QLQ-C30 and -MY20) were obtained before start of treatment, after 3 and 9 months of treatment and 6 and 12 months after treatment for patients who did not yet start second-line treatment. HRQoL changes and/or differences in frail and intermediate-fit patients (IMWG frailty score) were reported only when both statistically significant (p < 0.005) and clinically relevant (>MID). Results137 frail and 71 intermediate-fit patients were included in the analysis. Compliance was high and comparable in both groups. At baseline, frail patients reported lower global health status, lower physical functioning scores and more fatigue and pain compared to intermediate-fit patients. Both groups improved in global health status and future perspective; polyneuropathy complaints worsened over time. Frail patients improved over time in physical functioning, fatigue and pain. Improvement in global health status occurred earlier than in intermediate-fit patients. ConclusionHRQoL improved during anti-myeloma treatment in both intermediate-fit and frail MM patients. In frail patients, improvement occurred faster and, in more domains, which was retained during follow-up. This implies that physicians should not withhold safe and effective therapies from frail patients in fear of HRQoL deterioration.

Psychometric properties of disease-specific health-related quality of life instruments for food allergy: A COnsensus-based Standards for the selection of health Measurement INstruments-based systematic review.

Food allergies severely impact the health-related quality of life (HRQoL) of patients and their caregivers (family or informal caregivers). Currently there is no comprehensive review to provide an overview and critical assessment of the instruments in the field. Six databases were searched from inception until 10 August 2023, and a combination of subject terms and free words was used to search the literature. We used the COnsensus-based Standards for the selection of health Measurement INstruments methodology (COSMIN) to evaluate the measurement properties of the instruments. Forty-one studies reported on ten eligible instruments. Based on COSMIN guidelines, one instrument was recommended for Grade A, and the remaining nine instruments were recommended for Grade B. The Grade A instrument identified, the Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF), can help researchers assess the effectiveness of treatment for patients with food allergy and to understand the psychosocial impact of the disease on patients.

How well do we measure the impact of bowel dysfunction on health-related quality of life after rectal cancer surgery?

BackgroundRectal cancer surgery risks causing bowel dysfunction, which has an important impact on health-related quality of life. The validity of generic tools used to measure health-related quality of life after bowel dysfunction is unclear. This study aimed to determine the content validity of health-related quality-of-life measurement tools in rectal cancer. MethodsThis was a qualitative single-center study in which adult patients who underwent rectal cancer surgery with sphincter preservation from July 2017 to October 2020 were recruited. Patients were excluded if they developed local metastasis, required a permanent stoma, or had surgery <1 year since recruitment. Telephone-based semi-structured interviews were conducted. Bowel dysfunction was measured using the Low Anterior Resection Syndrome score. Content analysis was achieved using the International Classification of Functioning framework. ResultsRecurrent bowel dysfunction-related concepts included “Mental functions,” “Defecation functions,” “Emotional functions,” “Recreation and leisure,” “Intimate relationships,” and “Remunerative employment.” A mean of 7.5 recurrent bowel dysfunction-related concepts were identified within the health-related quality of life instruments analyzed. The European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire-C30 (n = 11) and the 36-Item Short Form Health Survey (n = 9) covered the greatest number of recurrent bowel dysfunction-related concepts. Concepts such as “Mental functions,” “Urination functions,” “Sexual functions,” “Driving,” and “Mobility” were not covered by any instrument. ConclusionThe content of traditional health-related quality-of-life instruments is missing important areas that represent the impact of bowel dysfunction after rectal cancer surgery on health-related quality of life. These findings could help improve patient-centered care in rectal cancer surgery.

Health-related quality of life and subjective well-being among children aged 9–12 years in Shandong Province, China

PurposeTo investigate the health-related quality of life (HRQoL) and subjective well-being (SWB) of children aged 9–12 years in eastern China, and examine concordance within child self-reported and parent proxy-assessed.MethodsData was collected from 9 to 12 years old children (including their parents) in Shandong Province in 2018. Participants self-completed a hard-copy questionnaire including Child Health Utility 9D (CHU9D), Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL™), Student’s Life Satisfaction Scale (SLSS), as well as information on socio-demographic characteristics and self-report health status. Spearman’s correlation coefficients and the difference between sub-groups were conducted to assess and compare the agreement on HRQoL and SWB instruments. Exploratory factor analysis (EFA) was used to ascertain the number of unique underlying latent factors that were associated with the items covered by the two generic HRQoL and the SWB instruments. The concordance of child self-reported and parent proxy-assessed was analyzed using weighted kappa coefficient and Bland-Altman plots.ResultsA total of 810 children and 810 parents were invited to participate in the survey. A valid sample of 799 (98.6%) children and 643 (79.4%) parents completed the questionnaire. The child self-reported mean scores were CHU9D = 0.87, PedsQL™ = 83.47, and SLSS = 30.90, respectively. The parent proxy-assessed mean scores were PedsQL™ = 68.61 and SLSS = 31.23, respectively. The child self-reported PedsQL™ was moderately correlated with the CHU9D (r = 0.52). There was a weak correlation between CHU9D and SLSS (r = 0.27). The EFA result found 3 factors whilst seven SLSS items grouped into a standalone factor (factor 3), and the nine dimensions of CHU9D shared two common factors with the PedsQL™ (factor 1 and factor 2). A low level of concordance was observed across all comparisons and in all domains (weighted kappa < 0.20) between parents and their children. Furthermore, a high level of discordance was observed between child self-reported and father proxy-assessed.ConclusionsCHU9D and PedsQL™ instruments have a higher agreement in measuring the HRQoL in children. CHU9D/PedsQL™ and SLSS instruments showed a low agreement and EFA result suggested that measuring SWB in children potentially may provide further information, which might be overlooked by using HRQoL instruments exclusively. Concordance of child self-reported and parent proxy-assessed was poor. Overall, mother-child concordance was higher than father-child concordance.