Health-related Quality Of Life Instruments Research Articles

Comparing Generic Paediatric Health-Related Quality-of-Life Instruments: A Dimensionality Assessment Using Factor Analysis.

Widely used generic instruments to measure paediatric health-related quality of life (HRQoL) include the EQ-5D-Y-5L, Child Health Utility 9 Dimension (CHU-9D), Paediatric Quality of Life Inventory (PedsQL) and Health Utilities Index (HUI). There are similarities and differences in the content of these instruments, but there is little empirical evidence on how the items they contain relate to each other, and to an overarching model of HRQoL derived from their content. This study aimed to explore the dimensionality of the instruments using exploratory factor analysis (EFA). Data from the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study were used. EQ-5D-Y-5L, CHU-9D, PedsQL and HUI data were collected via proxy or child self-report data. EFA was used to investigate the underlying domain structure and measurement relationship. Items from the four instruments were pooled and domain models were identified for self- and proxy-reported data. The number of factors was determined based on eigenvalues greater than1. A correlation cut-off of 0.32 was used to determine item loading on a given factor, with cross-loading also considered. Oblique rotation was used. Results suggest a six-factor structure for the proxy-reported data, including emotional functioning, pain, daily activities, physical functioning, school functioning, and senses, while the self-report data revealed a similar seven-factor structure, with social functioning emerging as an additional factor. We provide evidence of differences and similarities between paediatric HRQoL instruments and the aspects of health being measured by these instruments. The results identified slight differences between self- and proxy-reported data in the relationships among items within the resulting domains.

A Case Report of Chronic Functional Constipation after Lumbar Interbody Fusion That Improved Following Comprehensive Traditional Korean Medicine Treatment

This case report describe the effectiveness of combination treatment with Korean medicine for chronic functional constipation after lumbar interbody fusion. A female patient was treated for constipation lasting more than 6 months after surgery for lumbar disc herniation. For assessment, we used a NRS and Health-related Quality of Life Instrument with 8-Item Questionnaire (HINT-8). To assess changes in stool appearance, we used the Bristol Stool Scale. After 2 months of treatment, the NRS decreased from 8 to 1, the HINT-8 total score increased from 25 to 13, and the Bristol stool scale also improved. This case suggests that combined treatment with herbal medicine can improve symptoms of chronic constipation.

Low anterior resection syndrome phenotypes-Different symptom profiles for different patients.

Attention is increasingly being turned to functional outcomes as being central to colorectal cancer (CRC) survivorship. The current literature may underestimate the impact of evacuatory dysfunction on patient satisfaction with bowel function after anterior resection (AR) for CRC. The aim of this study was to investigate the impact of post-AR symptoms of storage and evacuatory dysfunction on patient satisfaction and health-related quality of life (HRQoL). A cross-sectional study was performed at an Australian hospital of patients post-AR for CRC (2012-2021). The postoperative bowel function scores used were: low anterior resection syndrome (LARS), St Mark's incontinence, Cleveland Clinic constipation and Altomare obstructive defaecation syndrome scores. Eight 'storage' and 'evacuatory' dysfunction symptoms were derived. A seven-point Likert scale measured patient satisfaction. The SF36v2® measured HRQoL. Linear regression assessed the association between symptoms, patient satisfaction and HRQoL. Overall, 248 patients participated (mean age 70.8 years, 57.3% male), comprising 103 with rectal cancer and 145 with sigmoid cancer. Of the symptoms that had a negative impact on patient satisfaction, six reflected evacuatory dysfunction, namely excessive straining (p < 0.001), one or more unsuccessful bowel movement attempt(s)/24 h (p < 0.001), anal/vaginal digitation (p = 0.005), regular enema use (p = 0.004), toilet revisiting (p = 0.004) and >10 min toileting (p = 0.004), and four reflected storage dysfunction, namely leaking flatus (p = 0.002), faecal urgency (p = 0.005), use of antidiarrhoeal medication (p = 0.001) and incontinence-related lifestyle alterations (p < 0.001). A total of 130 patients (53.5%) had 'no LARS', 56 (23.1%) had 'minor LARS' and 57 (23.4%) had 'major LARS'. Fifty-seven (44.5%) patients classified as having 'no LARS' had evacuatory dysfunction. Postoperative storage and evacuatory dysfunction symptoms have an adverse impact on patient satisfaction and HRQoL post-AR. The importance of comprehensively documenting symptoms of evacuatory dysfunction is highlighted. Further research is required to develop a patient satisfaction-weighted LARS-specific HRQoL instrument.

Differences and common ground in the frameworks of health-related quality of life in traditional Chinese medicine and modern medicine: a systematic review

PurposeThis systematic review aims to explore the conceptualization of health-related quality of life (HRQoL) in China. With HRQoL influenced by both modern medicine (MM) and traditional Chinese medicine (TCM), the study seeks to identify differences and common ground between the frameworks of MM and TCM as defined in the literature.MethodA systematic literature search was conducted across three Chinese databases and four English databases. The data was extracted including title, author(s), publication year, region, aim, method, category, and result. When sorting data, we broke down the HRQoL frameworks into concepts, domains and facets, with a focus on overlapped facets between the frameworks of MM and TCM.ResultsA total of 31 studies were included. In the perspective of TCM, HRQoL is centered around three key 'concepts': (1) 'xingshentongyi' (unity of body and spirit), (2) 'tianrenheyi' (harmony between man and nature), and (3) 'qiqing' (seven emotional forms). In contrast, the MM framework comprises 'physical,' 'mental,' 'social,' and 'environment' domains. Out of the 59 unique facets identified, 28 are common to both TCM and MM, 9 specific to TCM, and 22 specific to MM. 'Appetite,' 'sleep,' and 'energy' are the most frequently mentioned facets in both frameworks.ConclusionThe concept of HRQoL in China encompasses frameworks rooted in both TCM and MM. While TCM and MM have distinct healthcare approaches, they share overlapping domains when measuring HRQoL through questionnaires. Furthermore, TCM and MM demonstrate considerable convergence in terms of HRQoL facets, showing the potential for utilizing HRQoL instruments across different cultural settings.

CAHQL: A patient reported outcome instrument to assess health-related quality of life in congenital adrenal hyperplasia.

Measuring health-related quality of life (HRQoL) is a crucial aspect of evaluating health care outcomes. Patients with congenital adrenal hyperplasia (CAH) often self-report deficiencies in HRQoL. The aim of our study was to develop a disease-specific patient reported outcome (PRO) instrument to evaluate the HRQoL of patients >16 years old with classic congenital adrenal hyperplasia (CAH). Following the FDA guidelines for developing PRO instruments, we developed a conceptual framework for the instrument. A preliminary instrument was created after interviewing a representative sample of 12 patients with CAH between 16 to 68 years old and 3 parents, and obtaining expert feedback from 4 endocrinologists. The instrument was edited after cognitive interviews with 6 patients. Internal consistency of the instrument was evaluated using Cronbach's alpha. Validity was assessed by comparing the scores of our instrument with scores from widely used validated instruments for HRQoL and PRO not specific to CAH. Sixty-nine patients 16 to 75 years old participated in validating our preliminary instrument. The final questionnaire consists of 44 questions within 7 domains: General Health, Adrenal Insufficiency, Glucocorticoid Excess, Physical Functioning, Mental Health and Cognition, Social Functioning, and Sexual Functioning, with acceptable internal consistency (Chronbach's alpha≥0.6) and validity (r = -0.350 to 0.866). CAHQL is the first validated PRO instrument to capture disease specific HRQoL outcomes in CAH. In addition to its anticipated use in the clinical setting, the instrument could be used to assess the efficacy of novel treatments in development.

Correlation between disease activity and patient-reported health-related quality of life in rheumatoid arthritis: a cross-sectional study

ObjectiveWe aimed to provide a comprehensive assessment of health-related quality of life (HRQoL) in patients with rheumatoid arthritis (RA) of different activities and to evaluate the correlation between clinical activity...

Quality of Life Outcomes After Pediatric Otitis Media Surgery: A Systematic Review and Meta-Analysis.

Systematically review of literature characterizing health-related quality of life (HRQoL) impact of surgery in pediatric otitis media (OM) patients, and meta-analysis of studies using the OM-6 questionnaire. Pubmed, EMBASE, Cochrane Library, Scopus. A systematic review of literature of studies evaluating HRQoL outcomes for OM patients managed by surgery. Two investigators independently reviewed abstracts and full-length articles. Risk of bias was assessed using the MINORS criteria and Cochrane Risk of Bias 2 tool. The search yielded 1272 studies, 50 underwent full-text review and 23 met inclusion criteria. Non-randomized studies were of moderate to good quality, while randomized trials had a high risk of bias. Age ranged from 6 months to 15 years. Race and socioeconomic factors were inconsistently reported. There were 11 HRQoL outcome measure instruments of which four were disease-specific. Eleven studies used OM-6 and nine were included in the meta-analysis. Pooled analysis of five studies showed a mean OM-6 change of 1.79 (95% CI: 1.53-2.06; 95% PI: 0.92-2.67; I2 = 68%) 4-6 weeks after surgery; a mean change of 1.87 (95% CI: 1.15-2.58; 98%) after 6 months across two studies; and a mean change of 1.64 (1.02 to 2.27; -6.35 to 9.64; 98%) after 9-13 months across three studies. There is no consistency in HRQoL instruments used to evaluate pediatric OM surgery outcomes in current literature with few RCTs. Meta-analysis showed a clinically significant large improvement in HRQoL 4-6 weeks after tympanostomy tube placement. N/A Laryngoscope, 134:4176-4185, 2024.

Health-related quality of life (HRQoL) in German early benefit assessment: The importance of disease-specific instruments

IntroductionHealth-Related Quality of Life (HRQoL) data is frequently requested in early benefit assessment in Germany. To test the hypothesis that the importance of HRQoL in general and the significance of disease-specific instruments in particular has increased since the introduction of AMNOG in Germany, we analysed all early benefit assessments between 2011 and 2022. MethodsAll 793 early benefit assessments completed between 01/01/2011 and 03/11/2022 were systematically analysed. The HRQoL instruments featured in the dossier submissions were extracted for all assessments and categorized into generic and specific instruments. All G-BA resolutions were likewise assessed for consideration and acceptance of generic and specific HRQoL instruments. In addition, it was examined whether there was an association between HRQoL data and the extent of additional benefit. ResultsSince 2014 HRQoL data have continuously been submitted in 70% to 80% of assessments per year with the exception of 2022 (63%). Generally, disease-specific instruments are favoured, regarding submissions by industry but especially with higher acceptance by the G-BA in the resolution. Subgroup analyses revealed oncology as a major contributor to the submission and acceptance rates of disease-specific instruments. Disease-specific instruments were submitted in 81% of all oncology assessments and accepted in 53% of assessments. Overall, assessments with accepted HRQoL data tend to reach a higher overall benefit. Procedures with accepted HRQoL were most likely to receive a considerable benefit (31%), while for procedures in which HRQoL data were not accepted, a benefit was most often (65%) not proven. DiscussionIndustry has followed the request for submission of specific HRQoL instruments early on. Higher submission rates of specific instruments over time which at the same time meet the methodological requirements indicate that industry has learned from early assessments. A potential reason for the high submission- and acceptance rates of specific HRQoL instruments in oncology might be the particularly high relevance of HRQoL in this indication. Possible effects of changes in legislature on the future development of submission and acceptance of HRQoL data need to be monitored. ConclusionIn Germany, HRQoL has gained a relevant position in early benefit assessment over time. Overall specific instruments are favoured, regarding submissions by industry but especially through consideration by the G-BA in the resolution. Furthermore, HRQoL data can be supportive for benefit assessments, in particular to show that advantages in morbidity and/or mortality are reflected in HRQoL and not at the expense of HRQoL.

Health Fluctuations in Dementia and its Impact on the Assessment of Health-Related Quality of Life Using the EQ-5D-5L

ObjectivesTo quantify health fluctuations, identify affected health-related quality of life (HRQoL) dimensions, and evaluate if fluctuations affect the HRQoL instruments recall period adherence in people living with dementia (PlwD). MethodsCaregivers of PlwD completed a daily diary for 14 days, documenting if PlwD’s health was better or worse than the day before and the affected HRQoL dimensions. Health fluctuation was categorized into low (0-4 fluctuations in 14 days), moderate (5-8), and high (9-14). Also, caregivers and PlwD completed the EQ-5D-5L (proxy- and self-reported) on days 1, 7, and 14. Subsequently, caregivers were interviewed to determine whether recurrent fluctuations were considered in the EQ-5D-5L assessment of today’s health (recall period adherence). ResultsFluctuations were reported for 96% of PlwD, on average, for 7 of the 14 days. Dimensions most frequently triggering fluctuations included memory, mobility, concentration, sleep, pain, and usual activities. Fluctuations were associated with higher EQ-5D-5L health-states variation and nonadherence to the EQ-5D-5L recall period “today.” PlwD with moderate to high fluctuation had the highest EQ-5D-5L utility change between day 1 and 14 (0.157 and 0.134) and recall period nonadherence (31% and 26%) compared with PlwD with low fluctuation (0.010; 17%). Recall period nonadherence was higher in PlwD with improved compared with those with deteriorated health in the diary (37% vs 9%). ConclusionsHealth fluctuations frequently occur in dementia and strongly affect HRQoL assessments. Further research is needed to evaluate if more extended recall periods and multiple, consecutive assessments could capture health fluctuations more appropriately in dementia.

Correlation of handgrip strength with quality of life-adjusted pulmonary function in adults.

Handgrip strength (HGS) is acknowledged as a key indicator of overall physical fitness and is associated with various health outcomes. This research investigates the correlation between HGS and quality of life (QoL), focusing on its relation to pulmonary function in the general adult population. The study involved 19,402 participants aged 40 and above, spanning from 2014 to 2019, who underwent pulmonary function and HGS tests. Participants were categorized based on lung function, and regression analyses were employed to examine the relationship between HGS and QoL, with adjustments made for lung function. The average age of the cohort was 58.2 years, comprising 44.6% males and 41.2% smokers. Out of the 18,708 participants who completed the European Quality of Life Scale-Five Dimensions (EQ-5D-3L) assessment, higher severity levels in mobility, self-care, usual activities, pain or discomfort, and anxiety or depression were linked to lower HGS in both sexes. Additionally, among the 3,723 participants who completed the Health-related Quality of Life Instrument with 8 Items (HINT-8) assessment, higher severity levels in pain, work, and depression were associated with lower HGS in men. In women, higher severity levels in climbing stairs, pain, vitality, and work correlated with lower HGS. As problems indicated by EQ-5D worsened, there was a consistent decrease in handgrip strength (HGS) across both genders. The HINT-8 assessment further revealed that increased severity in pain and work-related issues led to reduced HGS in both men and women. This study highlights the relationship between HGS and Quality of Life (QoL), taking lung function into consideration, and underscores the importance of HGS as a potential marker of physical health and fitness.

Biofilm-producing Bacteria and Quality of Life after Endoscopic Sinus Surgery in Patients with Chronic Rhinosinusitis with Nasal Polyposis.

Chronic rhinosinusitis (CRS) is one of the most common health disorders in humans and has a major impact on health-related quality of life (HRQoL). Of the many factors contributing to the etiology of CRS, less is known about the correlation between CRS and bacterial biofilms and their impact on HRQoL. The aim of this prospective study was to investigate the relationship between biofilm-producing bacteria and patients' objective findings and HRQoL. Forty-eight patients with CRSwNP were enrolled in a 12-month prospective study. The Lund-Mackay (LM) CT and endoscopic Lund-Kennedy (LK) scores were obtained before endoscopic sinus surgery (ESS), and patients completed the HRQoL instruments: the 22-item Sinonasal Outcome Test (SNOT-22), the 36-item Short Questionnaire (SF-36), and the visual analog scale (VAS). A sinus culture was obtained at ESS, bacteria were isolated, and in vitro quantification of the biofilm was performed. The LK score and HRQoL were determined postoperatively at months 1, 3, 6, and 12. The most common bacterial isolates in patients with CRSwNP were Staphylococcus aureus (28%), coagulase-negative staphylococci (52%), and Pseudomonas aeruginosa (8%). Preoperatively, the highest LM and LK scores were found in patients with strong biofilm producers. Postoperative LK scores were significantly reduced in all patients. Postoperative VAS scores were significantly reduced from month 1 to month 12 postoperatively. Patients with strong biofilm producers had significantly worse nasal blockage, secretion, headache, facial pressure and pain, and loss of smell preoperatively, compared to patients with low biofilm producers. The most significant reduction in preoperative scores SNOT-22 and SF-36 (excluding physical functioning) was seen in patients with S. aureus and P. aeruginosa. Patients with strong biofilm producers had higher LK and LM scores preoperatively, and greater improvement in LK and HRQoL scores postoperatively. Microbiologic surveillance of all CRS patients is recommended.

Association of Head Injury, Neck Injury or Acoustic Trauma on Phenotype of Ménière's Disease.

The aim of the present study was to investigate adverse effects of head injury, neck trauma, and chronic noise exposure on the complaint profile in people with Ménière's disease (MD). The study used a retrospective design. Register data of 912 patients with MD from the Finnish Ménière Federation database were studied. The data comprised case histories of traumatic brain injury (TBI), neck trauma and occupational noise exposure, MD specific complaints, impact related questions, and the E-Qol health-related quality of life instrument. TBI was classified based on mild, moderate, and severe categories of transient loss of consciousness (TLoC). The mean age of the participants was 60.2 years, the mean duration of the disease was 12.6 years, and 78.7% were females. Logistic regression analysis, linear correlation, and pairwise comparisons were used in evaluating the associations. 19.2% of the participants with MD had a history of TBI. The phenotype of participants with TBI was associated with frequent vestibular drop attacks (VDA), presyncope, headache-associated vertigo, and a reduction in the E-QoL. Logistic regression analysis explained the variability of mild TBI in 6.8%. A history of neck trauma was present in 10.8% of the participants. Neck trauma associated with vertigo (NTwV) was seen in 47 and not associated with vertigo in 52 participants. The phenotype of NTwV was associated with balance problems, VDA, physical strain-induced vertigo, and hyperacusia. Logistic regression analysis explained 8.7% of the variability of the complaint profile. Occupational noise exposure was recorded in 25.4% of the participants and correlated with the greater impact of tinnitus, hyperacusis, and hearing loss. Neither the frequency, duration, or severity of vertigo or nausea were significantly different between the baseline group and the TBI, NTwV, or noise-exposure groups. The results indicate that TBI and NTwV are common among MD patients and may cause a confounder effect.

Portuguese Validation of the TAPQoL: A Health-Related Quality of Life Instrument for Children Aged 0-6 Years.

In Portugal, there are few generic and specific instruments to assess health-related quality of life (HRQoL) in children, especially those of preschool age. This study aimed to adapt and validate the Portuguese version of the Preschool Children Quality of Life Questionnaire (TAPQoL) in a community and clinical sample of children aged 0-6 years. The parents of 409 healthy children and 137 children undergoing treatment for burns and acute lymphoblastic leukemia completed the TAPQoL and were assessed on psychological morbidity and family functioning. Exploratory and confirmatory factor analyses were performed, as well as analysis of the psychometric properties as shown by internal consistency measures, convergent validity, and average variance extracted. Confirmatory factor analysis confirmed an 11-factor structure with good psychometric properties. The current version of the TAPQoL is a valid and reliable instrument for assessing HRQoL in Portuguese preschool children in community and clinical settings.

Trismus in head and neck cancer: translation and validation of the Chinese version of the Gothenburg Trismus Questionnaire-2 (C-GTQ-2).

Trismus, marked by restricted mouth opening, significantly affects patients with temporomandibular disorder (TMD) and head and neck cancer (HNC). Despite its prevalence, specialized questionnaires for trismus assessment are scarce. This study aims to fill this gap by translating and validating the Gothenburg Trismus Questionnaire version 2 (GTQ-2) into Chinese (C-GTQ-2), enhancing the evaluation of trismus in HNC and TMD patients. The study involved 78 HNC patients, 75 TMD patients, and a control group of 150 individuals without trismus symptoms. Participants were asked to complete the C-GTQ-2 and other health-related quality of life (HRQL) instruments. A subset of 30 individuals retook the questionnaire within two weeks to assess test-retest reliability. The C-GTQ-2 demonstrated remarkable reliability, with Cronbach's alpha values exceeding 0.70 in three of the four domains, indicating high internal consistency. The instrument also showcased high intra-class correlations in the test-retest, affirming its reliability. Furthermore, it exhibited strong convergent validity, aligning well with other HRQL instruments, and effectively discriminated between patients with and without trismus, establishing its discriminant validity. The C-GTQ-2 emerges as a valid and reliable tool for assessing trismus in HNC and TMD patients, promising to significantly enhance both clinical and research approaches to managing trismus-related complications in the Chinese-speaking demographic. C-GTQ-2 proves effective for trismus assessment in head and neck cancer and temporomandibular disorder patients, offering enhanced clinical and research utility.

Comparing the Psychometric Performance of Generic Paediatric Health-Related Quality of Life Instruments in Children and Adolescents with ADHD, Anxiety and/or Depression.

The aim of this study was to examine the validity, reliability and responsiveness of common generic paediatric health-related quality of life (HRQoL) instruments in children and adolescents with mental health challenges. Participants were a subset of the Australian Paediatric Multi-Instrument Comparison (P-MIC) study and comprised 1013 children aged 4-18 years with attention-deficit/hyperactivity disorder (ADHD) (n=533), or anxiety and/or depression (n=480). Participants completed an online survey including a range of generic paediatric HRQoL instruments (PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, CHU9D) and mental health symptom measures (SDQ, SWAN, RCADS-25). A subset of participants also completed the HUI3 and AQoL-6D. The psychometric performance of each HRQoL instrument was assessed regarding acceptability/feasibility; floor/ceiling effects; convergent validity; known-group validity; responsiveness and test-retest reliability. The PedsQL, CHU9D, EQ-5D-Y-3L and EQ-5D-Y-5L showed similarly good performance for acceptability/feasibility, known-group validity and convergent validity. The CHU9D and PedsQL showed no floor or ceiling effects and fair-good test-retest reliability. Test-retest reliability was lower for the EQ-5D-Y-3L and EQ-5D-Y-5L. The EQ-5D-Y-3L showed the highest ceiling effects, but was the top performing instrument alongside the CHU9D on responsiveness to improvements in health status, followed by the PedsQL. The AQoL-6D and HUI3 showed good acceptability/feasibility, no floor or ceiling effects, and good convergent validity, yet poorer performance on known-group validity. Responsiveness and test-retest reliability were not able to be assessed for these two instruments. In subgroup analyses, performance was similar for all instruments for acceptability/feasibility, known-group and convergent validity, however, relative strengths and weaknesses for each instrument were noted for ceiling effects, responsiveness and test-retest reliability. In sensitivity analyses using utility scores, performance regarding known-group and convergent validity worsened slightly for the EQ-5D-Y-3L and CHU9D, though improved slightly for the HUI3 and AQoL-6D. While each instrument showed strong performance in some areas, careful consideration of the choice of instrument is advised, as this may differ dependent on the intended use of the instrument, and the age, gender and type of mental health condition of the population in which the instrument is being used. ANZCTR-ACTRN12621000657820.

Smartphone application-based rehabilitation in patients with chronic respiratory and cardiovascular diseases

Rehabilitation improves symptoms, quality of life, and survival in patients with chronic respiratory or cardiovascular disease. We evaluated smartphone application-based rehabilitation programs for patients with chronic respiratory or cardiovascular diseases. This was a single-center prospective single arm study. Participants underwent smartphone application-based pulmonary or cardiac rehabilitation for 12 weeks. A total of 93 participants were recruited, and 75 visited after rehabilitation. Their median age was 67.0 (interquartile range, 60.0–70.8) years, and 60 (80.0%) were men. For patients with chronic respiratory disease (n = 41), VO2peak (median 13.7 to 15.4 ml/kg/min, P = 0.049), chronic obstructive pulmonary disease assessment test (median 14 to 6, P < 0.001), Euro-QoL 5-Dimension 5-Level (EQ-5D-5L) index (median 0.795 to 0.862, P = 0.001), and Health-related Quality of Life Instrument with 8 Items (HINT-8) index (median 0.784 to 0.855, P < 0.001) were significantly improved. For patients with chronic cardiovascular disease (n = 34), VO2peak (median 21.8 to 23.3, P = 0.007), EQ-5D-5L index (median 0.871 to 1.000, P = 0.037), and HINT-8 index (median 0.890 to 0.903, P < 0.001) were significantly improved. The smartphone application-based rehabilitation program improved exercise capacity and quality of life in patients with chronic respiratory or cardiovascular disease.Trial registration: https://clinicaltrials.gov/ct2/show/NCT05383950 (20/05/2022).

Health-related quality of life instrument with 8 items to measure health-related quality of life among family caregivers of people with dementia: A pilot validation study.

The health-related quality of life instrument with 8 items (HINT-8) was developed to measure health-related quality of life (HRQoL) in Korea. However, the HINT-8 has not yet been validated among the family caregivers of people with dementia (PwD). A cross-sectional pilot study. The study aimed to examine the convergent and discriminant validity of the HINT-8 among family caregivers of individuals with dementia. Forty-seven family caregivers of PwD. HINT-8 was compared with the 5-level EQ-5D (EQ-5D-5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short-form Bédard-Zarit Burden Interview (SZBI). The HINT-8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT-8 and EQ-5D-5L indices (r=0.85, p<.001). The HINT-8 had acceptable psychometric properties compared to the commonly used EQ-5D-5L, as indicated by the subdomains associated with family caregivers' burden measured by the SZBI. Future studies should compare the HINT-8 with existing dementia carer-specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity.

EQ-5D-5L Population Norms and Quality-Adjusted Life Expectancy by Sociodemographic Characteristics and Modifiable Risk Factors for Adults in Queensland, Australia

ObjectivesOver half of Australia’s disease burden is due to morbidity, predominantly chronic conditions. Health-related quality of life instruments provide measures of morbidity and health status across different dimensions with EQ-5D being one of the most widely used. This study reports EQ-5D-5L general population norms for Queensland, Australia using the recently published Australian value set. MethodsPopulation survey results from cross-sectional computer-assisted telephone interviews for Queensland adults in 2022 and 2023 were analyzed. EQ-5D-5L, as well as modifiable risk factors and sociodemographic data were collected. Using the recently published final Australian EQ-5D-5L value set, mean utility scores were calculated for Queensland, as well as by sociodemographic characteristics, including remoteness and socioeconomic area-based measures, and modifiable risk factors, such as smoking and body mass index. Results were combined with life tables to estimate quality-adjusted life expectancy (QALE) for subgroups with different lifestyles. ResultsThe EQ-5D utility score for the Queensland adult population was 0.916. Smoking daily, being obese or older in age, or living in the most disadvantaged socioeconomic area were associated with lower mean scores. QALE was 6.1 and 7.9 years shorter than the life expectancy for Queensland males and females, respectively, but generally, those who reported having healthier lifestyles had higher mean utility scores and thus longer QALE. ConclusionsIn addition to reporting Queensland EQ-5D-5L general population norms, these results demonstrate potential QALE gains in people following healthier lifestyles. The results support investment in prevention and may motivate further studies in this important area.

Estimating a Minimal Important Difference for the EQ-5D-5L Utility Index in Dialysis Patients

ObjectivesThe EQ-5D-5L is a commonly used health-related quality of life instrument for evaluating interventions in patients receiving dialysis; however, the minimal important difference (MID) that constitutes a meaningful treatment effect for this population has not been established. This study aims to estimate the MID for the EQ-5D-5L utility index in dialysis patients. Methods6-monthly EQ-5D-5L measurements were collected from adult dialysis patients between April 2017 and November 2020 at a renal network in Sydney, Australia. EQ-VAS and Integrated Palliative care Outcome Scale Renal symptom burden scores were collected simultaneously and used as anchors. MID estimates for the EQ-5D-5L utility index were derived using anchor-based and distribution-based methods. ResultsA total of 352 patients with ≥1 EQ-5D-5L observation were included, constituting 1127 observations. Mean EQ-5D-5L utility index at baseline was 0.719 (SD ± 0.267), and mean EQ-5D-5L utility decreased over time by −0.017 per year (95% CI −0.029 to −0.006, P = .004). Using cross-sectional anchor-based methods, MID estimates ranged from 0.073 to 0.107. Using longitudinal anchor-based methods, MID for improvement and deterioration ranged from 0.046 to 0.079 and −0.111 to −0.048, respectively. Using receiver operating characteristic curves, MID for improvement and deterioration ranged from 0.037 to 0.122 and −0.074 to −0.063, respectively. MID estimates from distribution-based methods were consistent with anchor-based estimates. ConclusionsAnchor-based and distribution-based approaches provided EQ-5D-5L utility index MID estimates ranging from 0.034 to 0.134. These estimates can inform the target difference or “effect size” for clinical trial design among dialysis populations.

Health-related quality of life in mild-to-moderate COVID-19 in the UK: a cross-sectional study from pre- to post-infection

BackgroundThe aim of this study was to estimate the impact of mild-to-moderate COVID-19 on health-related quality of life (HRQoL) over time among individuals in the United Kingdom, adding to the evidence base that had focussed on severe COVID-19.MethodsA bespoke online survey was administered to individuals who self-reported a positive COVID-19 test. An amended version of a validated generic HRQoL instrument (EQ-5D-5L) was used to measure HRQoL retrospectively at different timepoints over the course of an infection: pre-COVID-19, acute COVID-19, and long COVID. In addition, HRQoL post-COVID-19 was captured by the original EQ-5D-5L questionnaire. A mixed-effects model was used to estimate changes in HRQoL over time, adjusted for a range of variables correlated with HRQoL.ResultsThe study recruited 406 participants: (i) 300 adults and 53 adolescents with mild-to-moderate COVID-19 who had not been hospitalised for COVID-19 during acute COVID-19, and (ii) 53 adults who had been hospitalised for COVID-19 in the acute phase and who had been recruited for validation purposes. Data were collected between January and April 2022. Among participants included in the base-case analysis, EQ-5D-5L utility scores were lower during both acute COVID-19 (β=-0.080, p = 0.001) and long COVID (β=-0.072, p < 0.001) compared to pre COVID-19. In addition, EQ-5D-5L utility scores post-COVID-19 were found to be similar to the EQ-5D-5L utility scores before COVID-19, including for patients who had been hospitalised for COVID-19 during the acute phase or for those who had experienced long COVID. Moreover, being hospitalised in the acute phase was associated with additional utility decrements during both acute COVID-19 (β=-0.147, p = 0.026) and long (β=-0.186, p < 0.001) COVID.ConclusionPatients perceived their HRQoL to have varied significantly over the course of a mild-to-moderate COVID-19 infection. However, HRQoL was found to return to pre-COVID-19 levels, even for patients who had been hospitalised for COVID-19 during the acute phase or for those who had experienced long COVID.