Health-related Quality Of Life Research Research Articles

Characteristics associated with SF-36 in alpha-1 antitrypsin deficiency-associated COPD: a cross-sectional analysis

BackgroundGeneric measures of health-related quality of life (HRQoL), such as the 36-Item Short Form Survey (SF-36), are widely used in assessing chronic conditions. These tools have an advantage over disease-specific instruments, as they allow comparisons across different health conditions and with the general population. In alpha-1 antitrypsin deficiency (AATD)-associated chronic obstructive pulmonary disease (COPD), HRQoL research remains scarce. This cross-sectional study evaluates the factors associated with HRQoL in a cohort of patients with AATD-associated COPD.MethodsOur study included participants of AlphaNet (2008-2019), a health management organization for people with AATD in the US who are prescribed augmentation therapy. Norm-based SF-36 scores for the mental and physical component summary scores (MCS and PCS, mean of 50 ± 10 in the general US population) and 8 individual scales were evaluated. Individuals with lung disease and data available on ≥1 measurement on any SF-36 scale and clinically relevant characteristics such as modified Medical Research Council (mMRC) scale, exacerbation frequency, productive cough, and use of oxygen were included in these analyses. Generalized linear regression models were fit to examine the association of baseline characteristics with MCS and PCS scores. Age, sex, regular use of oxygen, exacerbation frequency, mMRC, and productive cough were included in these models.ResultsParticipants (n=4398, mean age 57.6 [SD=10.6] years, 45.4% female) had a mean MCS score of 51.2 ± 10.8 and PCS of 36.3 ± 9.8. The average mMRC score was 2.4 ± 1.3, and 56.4% had 2 or more exacerbations per year. Overall, the physical component of SF-36 was more severely impacted compared to the mental component. In multivariable regression analyses, PCS scores were significantly associated with exacerbation frequency, mMRC, regular use of oxygen, and productive cough; MCS was associated with age, sex, exacerbation frequency, mMRC, and productive cough.ConclusionsThese findings demonstrate that patient-perceived physical health is significantly impaired in this cohort of people with AATD-associated COPD compared to mental health. Longitudinal studies are needed to evaluate the change in physical and mental health status over time in this population.

Knowledge gaps in health-related quality of life research performed in children with bleeding disorders - A scoping review.

Bleeding disorders (BDs) may influence health-related quality of life (HRQoL) in children and caregivers. Measuring HRQoL gives insight into domains requiring support and provides an opportunity to evaluate the effects of novel therapies. To gain insight in the current body of literature on HRQoL in children with BDs in order to identify knowledge gaps for research and further development of this field. Scoping review. We included 53 articles, describing studies mainly performed in Europe and North-America (60.4%) and mostly within the last ten years. Only 32% studies included children<4 years. Almost all studies (47/53, 88.7%) were performed in boys with haemophilia, pooling haemophilia A and B (n=21) and different disease severities (n=20). Thirteen different generic and five disease-specific HRQoL-questionnaires were applied; all questionnaires were validated for haemophilia specifically. Six (11,3%) combined generic and disease-specific questionnaires. Self-reports were most frequently applied (40/53, 75.5%), sometimes combined with proxy and/or parent-reports (17/53, 32.1%). Eleven studies used a reference group (20.8%). Statistical analyses mostly consisted of mean and SD (77.4%). HRQoL-research is mainly performed in school-aged boys with haemophilia, treated in developed countries. Pitfalls encountered are the pooling of various BDs, subtypes and severities, as well as the application of multiple generic questionnaires prohibiting comparison of results. More attention is needed for broader study populations including other BDs, young children, feminine bleeding issues and platelet disorders, as well as the use of HRQoL as an effect-measurement tool for medical interventions, and more thorough statistical analysis.

Factors affecting quality of life in adults with HIV: A local cross-sectional study.

Understanding health-related quality of life (HRQOL) among people with HIV (PWH) can inform strategies to maintain or improve health and functioning. Most HRQOL research has focused on resource-rich settings, underrepresenting younger cohorts in low-resource settings. To assess HRQOL and associated factors in PWH visiting two primary healthcare clinics in the Western Cape, South Africa. A cross-sectional study included 48 PWH (58.3% women; mean age: 39.2 [10.3]). Health-related QOL was assessed using EQ-5D-5L descriptive domains, visual analogue scale (EQ-VAS), and index score (EQ-index). Mobility was assessed using clinical tests. Tobit regression determined associations. Mean and median EQ-VAS scores were 88.14 (16.35) and 95.00. Mean and median EQ-index scores were 0.84 (0.10) and 0.90. PWH reported problems as pain/discomfort (35.4%), depression/anxiety (25.0%), mobility (22.9%), usual activities (18.7%) and self-care (12.5%) domains. Slow chair rise (p = 0.012), low income (p = 0.030), longer HIV duration (p = 0.009) and polypharmacy (p = 0.034) were associated with lower HRQOL. Antiretroviral therapy (ART) adherence was associated with higher HRQOL (p = 0.020). Despite high overall HRQOL, specific domains presented challenges to PWH. Health-related QOL was associated with chair rise repetitions, income, HIV duration, polypharmacy, and treatment adherence. Comprehensive care and contextualised interventions to address these through rehabilitation, including health promotion, are proposed strategies for future investigation. Clinicians should be cognisant of potential physical and mental functioning problems, and factors related to drug therapy, socio-economic status and disease duration that may affect HRQOL even in seemingly unimpaired PWH.

Age, quality of life and mental well-being in adolescent population: a network model tree analysis

This study presents the results of a network-based analysis of health related quality of life (HRQoL) among Slovenian adolescents. The study aimed to examine the relationship between HRQoL and mental well-being among adolescents of different age and gender groups. A cross-sectional study was conducted from November 2019 to January 2020 in 16 primary and 9 secondary schools in Slovenia. The KIDSCREEN-27 scale was used to collect the data on HRQoL, and the Warwick–Edinburgh Mental Well-being Scale to collect data on mental well-being. We used network model trees to demonstrate differences in psychometric network structure measuring correlations between different concepts in adolescent HRQoL. A total of 2972 students aged 10–19 years participated in the study. The significant split in the network tree (p < 0.001) indicated differences in relations between HRQoL subscale scores and mental well-being score among adolescents younger than 12 years old. In comparison to older adolescents the correlation between mental well-being and mood scores was significantly weaker in this group of the youngest participants (p < 0.001). A network model tree analysis also uncovered an interesting pattern based on gender and age (p < 0.013) where a correlation between mood and family support became weaker for female at the age of 12 and for male at the age of 16. Data mining techniques have recently been used by healthcare researchers and professionals. Network-based analysis is an innovative alternative to classical approaches in HRQoL research. In this study we demonstrate the significant differences in the perceptions of HRQoL and mental well-being among adolescents in different age and gender groups that were discovered using tree-based network analysis.

Grit and Health-Related Quality of Life in Adolescents and Young Adults with Cancer: Mediating Role of Health Self-Efficacy and Treatment Adherence.

Challenges with health-related quality of life (HRQOL) are common among adolescents and young adults (AYA) with cancer. Literature on HRQOL has largely been focused on individual deficits, rather than individual strengths. The present study investigated the relations between a strengths-based concept called grit (i.e., perseverance and passion for long-term goals), self-management (i.e., health self-efficacy and adherence), and HRQOL among AYA with cancer. Sixty-seven AYA receiving cancer treatment (Mage=17.1; 50.7% female; 25.4% Black, Hispanic, Asian, or a race other than white) and their caregivers (73.0% mothers) completed a semistructured, validated interview about adherence. AYA also completed self-report questionnaires about perceptions of their grit, health self-efficacy, and HRQOL. After controlling for sex, health self-efficacy (i.e., a cognitive self-management variable) mediated the relation between grit and HRQOL (95% confidence interval = .74-6.52). When testing adherence to medications, diet, or physical activity as mediators of the relation between grit and HRQOL, mediation models were non-significant. Among AYA with cancer, this study identified grit as an individual strength associated with more positive self-management beliefs, which in turn, related to better HRQOL. This adds to a growing body of literature supporting the need for resiliency-oriented, strengths-based approaches to AYA HRQOL research. Future directions include exploring the role of caregiver grit in relation to AYA cancer self-management, given that caregivers have demonstrated a high degree of involvement in AYA cancer care.

Population norms for the EQ-5D-3L and EQ-5D-5L in Romania

BackgroundThe majority of patient reported outcome measures (PROMs) don’t have population norms in Romania. This is the case with the EQ-5D as well. Therefore, we aimed to estimate population norms for the Romanian versions of the EQ-5D-5L, EQ-5D-3L, their indexes, and the EQ-VAS.MethodsA cross-sectional survey was conducted in all regions of Romania from November 2018 to November 2019. A three-stage probability sampling procedure stratified by region and settlement size was used to select a representative sample. Interviews were computer-assisted and conducted in respondents’ homes by trained interviewers. Health status was assessed with the EQ-5D-5L, the EQ-5D-3L and the EQ VAS. Descriptive statistics were used to estimate population norms by age groups and sex for the EQ-5D-5L, the EQ-5D-3L, their indexes and the EQ VAS. Population norms were weighted using survey weights. Indexes for the EQ-5D questionnaires were estimated using the recently developed Romanian value sets.ResultsData from 1,649 interviews was analysed in the present study. Survey weights were used so that sex and place of residence ratios for the weighted sample matched the Romanian general population distribution. Participants’ mean age was 47.4 years (SE = 1.157) and 50.3% of them reported being in good health. The dimension for which people reported the highest number of problems for both questionnaires was the pain/discomfort dimension. Men aged 35 plus reported fewer problems with pain/discomfort than women for both the EQ-5D-5L and EQ-5D-3L. Health decreased with age as shown by the decrease from age group 18–24 to age group 75 plus in the indexes of both questionnaires: from 0.977 (SE = 0.005) to 0.765 (SE = 0.017) for EQ-5D-5L and from 0.981 (SE = 0.005) to 0.784 (SE = 0.019) for EQ-5D-3L. There was 29.9 points drop in the EQ VAS score between the youngest and oldest group.ConclusionsPopulation norms for the Romanian versions of the EQ-5D-5L, EQ-5D-3L, their indexes, and the EQ VAS are now available. These can now be used as reference values by healthcare professionals, researchers and decision-makers leading to a further development of health-related quality of life research in Romania.

A Note from the Field “Potlatch” Advancing a Health Survey: The Pen is Truly Mighty

Despite vast improvements in chemo-therapeutic interventions extensively extending the life span of patients with chronic and terminal diseases, there also is the unhappy extension of side- effects and adverse events. Thus, Health-Related Quality of Life (HR-QoL) becomes equally as important as length of life. Accurately, reliably, validly, and representatively measuring the on-going pulse beat of HR-QoL means ensuring optimal responses and response rates, which in turn means fostering and maximizing Survey Participants’ continued rapport, enlistment, engagement, and participation regarding HR-QoL research survey studies. This is generally true regarding all human subjects’ research. HR-QoL survey work at a nationally renowned Cancer Center recently identified an example of Potlatch or gift-giving (i.e., gifting), and its surrounding nuances, that were calculated and appear to evoke enhanced reciprocal engagement in a HR-QoL survey. This work involves continuous, iterative marketing study. The intent of this field note is to describe the methodological phenomenon that may have epistemological and theoretical relevance for ubiquitously advancing the interest of health survey research. Specifically, the contention will be that considered, and tactically deployed Potlatch can serve as a mechanism for facilitating and enhancing health survey research as well as enhancing stronger social engagement in research and treatment for patients undergoing medical care for long-term, chronic illness. First, it can rejuvenate and refocus Survey Participants’ involvement. Second, it can serve as an entrée and springboard to further forge a social connection in the interest of research. Lessons Learned and implications are reported.

Health-related quality of life by race, ethnicity, and country of origin among cancer survivors.

Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. This population-based, cross-sectional study used an innovative methodology to examine how self-reported racial and ethnic groups, by country of origin, report differential HRQOL experiences after adjusting for clinical and demographic characteristics, including socioeconomic status. Recruited from 4 cancer registries in California, Louisiana, and New Jersey, cancer survivors completed Patient-Reported Outcomes Measurement Information System measures of fatigue, pain interference, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. Latent profile analysis clustered survivors in HRQOL clusters based on including all the Patient-Reported Outcomes Measurement Information System domains. The 5366 participants (60% female; 40% male; average age of 59.8 years) included 17% Asian, 18% Black, 21% Hispanic, and 41% White survivors. Survivors were grouped into 4 clusters: high HRQOL (26%), average HRQOL (34%), low HRQOL (29%), and very low HRQOL (11%). Among many differences by race, ethnicity, and country of origin, Caribbean cancer survivors were more likely to be in the very low HRQOL cluster (odds ratio = 2.67, 95% confidence interval = 1.31 to 5.43) compared with non-Hispanic White survivors. Similarly, American Indian and Alaska Native, Cuban, Dominican, and Puerto Rican cancer survivors had relatively high percentages in the very low HRQOL cluster. This study found statistically significant differences in HRQOL experience by race, ethnicity, and country of origin, even after adjusting for social determinants of health. These findings inform future HRQOL research to include these self-reported factors.

Protocol for a systematic review exploring the psychometric properties of self-report health-related quality of life and subjective wellbeing measures used by adolescents with intellectual disabilities

BackgroundWhilst there are studies that have systematically reviewed the psychometric properties of quality of life measures for children and young people with intellectual disabilities, these narrowly focus on disease or health conditions. The objective of this planned systematic review is therefore to collate, summarise, and critically appraise the psychometric properties of self-report health-related quality of life (HRQoL) and subjective wellbeing measures used by adolescents (aged 11–16) with an intellectual disability.MethodsWe designed and registered a study protocol for a systematic review of studies which explores the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. Electronic databases including PsycINFO, CINAHL, MEDLINE, and ERIC will be searched using predefined search terms to identify relevant studies. Quantitative and mixed-methods studies, and studies published in peer-reviewed journals or grey literature, will be included. Review papers, editorials, and case studies will be excluded. Eligible studies should identify self-report measures which assess HRQoL and subjective wellbeing among adolescents with intellectual disabilities. The methodological quality of the included studies will be assessed by applying the COSMIN Risk of Bias checklist. The quality of the evidence (i.e. the total body of evidence used for the overall ratings on each psychometric property of an instrument) will be evaluated in accordance with the modified GRADE guidelines.DiscussionThis systematic review will be among the first to systematically explore the psychometric properties of self-report HRQoL and subjective wellbeing measures used by adolescents with intellectual disabilities. By providing evidence-based knowledge about measures being used in HRQoL and subjective wellbeing research amongst this population, and more importantly how reliable and valid these measures are, the most suitable for use will be identified. Our findings will be of potential interest to clinicians, researchers, and service providers who need information about the methodological quality and the characteristics of measures to make informed decisions about the most reliable and valid tool for a specific purpose. The findings from this study will contribute to the knowledge surrounding available and appropriate measures to use for measuring HRQoL and subjective wellbeing of adolescents with intellectual disabilities, which are necessary to inform intervention development and future health policy.Systematic review registrationThe protocol has been registered at the International Prospective Register of Systematic Reviews (PROSPERO). The registration number is CRD42021231697.

Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study.

Adults living with mechanical circulatory support (MCS) present with unique challenges (e.g., leftventricular assist device [LVAD]-related self-care, adverse events) to research study enrollment, engagement, and completion. The purpose of this study was to understand the experiences of adults with MCS who were eligible for and enrolled in a study of health-related quality of life (HRQOL). In a secondary analysis of data from the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life study, we used a mixed-methods approach to evaluate research engagement and experiences among adults preparing to undergo or currently living with MCS implant. First, we assessed the cascade of study engagement. Second, we assessed research experiences using a structured interview developed for this study. Of 1011 participants approached for the study, 86.7% enrolled, 12.7% declined, and 0.6% were ineligible. Of 877 participants enrolled, 272 were pre-implant (of whom 88% completed assessments; "respondents") and 605 were post-implant (of whom 74% completed assessments). Only 14% of respondents reported difficulty completing the questionnaires, 54% had previously used an iPad to complete questionnaires, and 62% reported that their experience was "as expected." Respondents qualitatively described both positive (e.g., value of research) and negative (e.g., too much time) research experiences, difficulties completing questionnaires (e.g., online platform, health literacy issues), and provided recommendations for the questionnaires and delivery. Participants enjoyed participating in HRQOL research focused on MCS and had unique perspectives for improving the questionnaires. It is important to minimize the burden of participation and critical to be flexible to meet participant preferences for research engagement. NCT03044535 (accessible at https://clinicaltrials.gov/ct2/show/NCT03044535 ), registered February 7, 2017.

Challenges and opportunities for using population health data to investigate cancer survivors’ quality of life in Australia

There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.

What's missing in sex chromosome aneuploidies? Representation and inclusion

What's missing in sex chromosome aneuploidies? Representation and inclusion

POSC327 Everyone Should be Invited to the Prom: Diversifying Patient Reported Outcome Measures for LGBTQ+ Inclusion

Patient-reported outcome (PRO) measures assessing health-related quality of life (HRQoL) should assess concepts using language which is inclusive of all individuals who may complete it. Marginalised groups, such as the LGBTQ+ community, are often not considered in PRO development and selection, which can impact the validity of PRO measures in these populations. The objective of this conceptual piece is to evoke discussion on how best to incorporate LGBTQ+ perspectives into measures, the implications of excluding such perspectives, and challenges to engaging the LGBTQ+ community in HRQoL research.

Sustained Improvement in Health-Related Quality of Life in Patients with Hemophilia A with or without Inhibitors Treated with Fitusiran Prophylaxis

BACKGROUNDFitusiran is an investigational, subcutaneous (SC), prophylactically administered small interfering RNA (siRNA) therapeutic. It targets antithrombin and restores thrombin generation sufficient to rebalance hemostasis in people with hemophilia A or B, with or without inhibitors. Long-term exposure to fitusiran is being studied in a Phase 1/2, 6-year open-label extension study (NCT02554773) in patients with hemophilia (PwH) A or B with or without inhibitors. Improvement in the health-related quality of life (HRQoL) as measured by Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL) total score, and specifically in the physical health domain was previously reported by von Mackensen et al. for PwHA with inhibitors (NCT02554773, N=17, von Mackensen et al. Blood 2020;136(1):23-24). This analysis aimed to present HRQoL changes from baseline to last available measure (LAM), as measured by the Haem-A-QoL total score and domains (filtered by actual treatment exposure following 2 voluntary dosing holds) in PwHA, with or without inhibitors, who continued into the Phase 2 open-label extension study.METHODSParticipants who completed the Phase 1 study (NCT02035605) were eligible to participate in Phase 2 long-term exposure study (NCT02554773). All participants received fixed monthly doses of 50 mg (N=9) or 80 mg (N=18) of fitusiran. HRQoL data were collected in 3-month lapse periods. Mean changes from baseline to LAM were calculated for the Haem-A-QoL (total score and domains).RESULTSAs of February 2021, 26 severe and 1 moderate PwHA (13 with, 14 without inhibitors) with mean baseline age (SD) 37.3 (9.7) were treated for up to mean (SD) 33.32 (17.06) months. For the total Haem-A-QoL score and each of 10 domains, mean improvements from baseline to LAM (lower scores denoting better HRQoL) were consistently observed in PwHA (except for the sport & leisure domain that was higher in the non-inhibitor group). Mean estimated reductions (SD) in the Haem-A-QoL total score were -8.33 (13.84) and -9.16 (14.55) while that in the physical health domain score were -13.21 (25.07) and -7.14 (22.80), for PwHA with and without inhibitors respectively (Table 1). When comparing Haem-A-QoL domains in inhibitor to non-inhibitor participants, results suggest a modest favorable trend for non-inhibitor patients (greater reductions in 4 vs 6 domains, respectively).CONCLUSIONSMean improvements in the Haem-A-QoL total scores and 9 out of 10 domains suggest sustained HRQoL improvements in PwHA. Small sample size and outlying results might limit the interpretation. Further research in HRQoL for fitusiran will include a larger population on the new 50 mg every other month dose regimen, and notably Phase III results from NCT03549871 (open-label study in patients switching to fitusiran from previous prophylaxis or bypassing agents) and NCT03754790 (open-label, long-term safety and efficacy study of fitusiran) in various subpopulations. [Display omitted] DisclosuresCano: Sanofi Genzyme: Current Employment, Current equity holder in publicly-traded company; Takeda: Ended employment in the past 24 months. Bartelt-Hofer: Sanofi: Current Employment, Current equity holder in publicly-traded company, Current holder of individual stocks in a privately-held company. Hu: Sanofi: Current Employment. Andersson: Sanofi: Current Employment, Current equity holder in publicly-traded company; WEST advisory committee member: Membership on an entity's Board of Directors or advisory committees. Dasmahapatra: Sanofi: Current Employment, Current equity holder in publicly-traded company. Von Mackensen: Biomarin: Speakers Bureau; Novo Nordisk: Consultancy; Sanofi: Consultancy; Sobi: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; University Medical Centre Hamburg-Eppendorf: Current Employment; CSL Behring: Speakers Bureau; Chugai/Roche: Membership on an entity's Board of Directors or advisory committees.

Power(ful) myths: misconceptions regarding sample size in quality of life research.

Carefully selecting the sample size for a research study is one of the most fundamental ways to utilize resources in an ethical manner, maximize impact and replicability, and minimize research waste when investigating questions relevant to health-related quality of life (HRQOL). Despite an increased focus on sample size in the methodological literature, the topic has received limited attention in the HRQOL field, and there are still misconceptions that can weaken even well-intentioned sample size planning. This article aims to highlight common misconceptions, provide accessible and non-technical corrections to these misconceptions, and show how HRQOL researchers can benefit from a more nuanced understanding of sample size planning. Misconceptions were identified broadly through examples within the health, psychology, and HRQOL literatures. In examining these misconceptions, study-level (e.g., missing data, multilevel designs, multiple reported outcomes) and field-level (e.g., publication bias, replicability) issues relevant to HRQOL research were considered. Misconceptions include: (a) researchers should use rules of thumb or the largest sample size possible, (b) sample size planning should always focus on power, (c) planned power = actual power, (d) there is only one level of power per study, and (e) power is only relevant for the individual researcher. Throughout the article, major themes linked to these misconceptions are mapped onto recent HRQOL studies to make the connections more tangible. By clarifying several challenges and misconceptions regarding sample size planning and statistical power, HRQOL researchers will have the tools needed to augment the research literature in effective and meaningful ways.

Health-related quality of life among breast cancer patients compared to cancer survivors and age-matched women in the general population in Vietnam

PurposeThis study compared the health-related quality of life (HRQoL) of breast cancer (BC) patients, survivors, and age-matched women from the general population in Vietnam to address the paucity of HRQoL research and contribute to the robust assessment of BC screening and care in Vietnam.MethodsThe standardised EQ-5D-5L instrument was incorporated in an online survey and a hospital-based face-to-face survey, and together with data from the Vietnam EQ-5D-5L norms study. χ2 tests assessed EQ-5D health profile associations and a Tobit regression model investigated the association between overall health status (EQ-VAS/utility scores) and sociodemographic and clinical characteristics.ResultsA total of 309 participants (107 patients undergoing treatment and 202 survivors who had completed treatment) provided usable responses. The dimensions that affected mostly the HRQoL of women with BC were pain/discomfort and anxiety/depression. Current patients and survivors differed significantly regarding HRQoL dimensions of mobility, self-care, usual activities, and anxiety/depression. Their health utilities were 0.74 and 0.84, respectively, compared with 0.91 for age-matched Vietnamese women in the general population (p < 0.001). Treatment status (survivor vs patient), younger age, higher monthly household income, and higher education levels were associated with higher health utility.ConclusionsThe results point to unmet needs in mental health support and well-being and for attention to be given to the development of a biopsychosocial system of cancer diagnosis, treatment, and care. The results will also inform future assessments of the comparative value for money of interventions intended to impact on breast cancer in Vietnam.

Clusters Across Multiple Domains of Health-Related Quality of Life Reveal Complex Patient Outcomes After Subarachnoid Hemorrhage.

Patients with subarachnoid hemorrhage were prospectively identified. Clinical data were prospectively recorded. Health-related quality of life was prospectively assessed at 3-month follow-up using the National Institutes of Health Patient Reported Outcomes Measurement Information System and neuro-quality of life in the domains of mobility, cognitive function, satisfaction with social roles, and depression. We used k-means clustering to analyze prospectively recorded health-related quality of life data, identifying clusters of complex patient outcomes. Decision tree analysis identified index hospital stay factors predictive of a patient having a particular complex patient outcome at follow-up. Academic medical center. One hundred three survivors of subarachnoid hemorrhage. None. We analyzed 103 patients, of whom 75 (72.8%) were female, and mean age was 53.6 ± 13.4 years. There were three complex patient outcomes: health-related quality of life greater than 1 sd better than the U.S. mean across all domains (n = 23, 22.3%), health-related quality of life greater than 1 sd worse than U.S. mean across all domains (n = 26, 25.2%), and satisfaction with social roles greater than 0.5 sd worse than U.S. mean with cognitive function, depression, and mobility scores near the U.S. mean (n = 54, 52.4%). In decision tree analysis, hospital disposition and Hunt and Hess Grade were associated with complex patient outcome. Complex patient outcomes across multiple domains of health-related quality of life at follow-up after subarachnoid hemorrhage are distinct and may be predictable.

Is Tai Chi an effective intervention for enhancing health-related quality of life in older people with mild cognitive impairment? An interventional study.

Many neuropsychiatric symptoms in persons of MCI cause negative impacts on their HRQOL. There is limited HRQOL research investigating the effect of Tai Chi on older people with MCI. To determine the effectiveness of a Tai Chi program in enhancing health-related quality of life (HRQOL) among community-dwelling older people with mild cognitive impairment (MCI) in Hong Kong. This was a quasi-experimental study using a nonequivalent control group (CG) design. Four social centres for older people participated in the study, of which two centres were randomised for Tai Chi intervention and the other two were treated as control. Participants in the intervention group (IG) were arranged for a 1-hour Tai Chi class twice weekly for 16weeks, whereas participants in the CG were advised to join various recreational activities in the social centres as usual. For outcome evaluation, the Chinese version of the Short Form-12 Health Survey-Standard 1 (SF-12) was employed to assess participants' perceived HRQOL. One hundred and sixty participants were recruited (IG=80, CG=80). Data were collected at baseline (T0) and 16-week post-intervention (T1).The IG reported significant improvement in the physical health component (PCS) (p=.036), the mental health component (MCS) (p=.014), as well as several subscales of SF-12, namely, the role-physical (RP) (p=.044), the bodily pain (BP) (p<.001) and the vitality (VT) (p=.004) subscales, in comparison with the CG. The current study results extended our knowledge about Tai Chi of which the mind-body exercise could enhance the physical and psychosocial well-being in older people with MCI. The findings have the potential to inform health and social care professionals to promote Tai Chi in community settings, as it may represent a non-intensive and age-fitting strategy to promote HRQOL in older people with MCI. NCT03404765 (Retrospectively registered January 19, 2018).

Health-related quality of life outcome measures for children surviving critical care: a scoping review.

Health-related quality of life (HRQL) has been identified as one of the core outcomes most important to assess following pediatric critical care, yet there are no data on the use of HRQL in pediatric critical care research. We aimed to determine the HRQL instruments most commonly used to assess children surviving critical care and describe study methodology, patient populations, and instrument characteristics to identify areas of deficiency and guide investigators conducting HRQL research. We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Registry for studies evaluating pediatric critical care survivors published 1970-2017. We used dual review for article selection and data extraction. Of 60,349 citations, 66 articles met inclusion criteria. The majority of studies were observational (89.4%) and assessed HRQL at one post-discharge time-point (86.4%), and only 10.6% of studies included a baseline assessment. Time to the first follow-up assessment ranged from 1month to 10years post-hospitalization (median 3years, IQR 0.5-6). For 26 prospective studies, the median follow-up time was 0.5years [IQR 0.25-1]. Parent/guardian proxy-reporting was used in 83.3% of studies. Fifteen HRQL instruments were employed, with four used in >5% of articles: the Health Utility Index (n = 22 articles), the Pediatric Quality of Life Inventory (n = 17), the Child Health Questionnaire (n = 16), and the 36-Item Short Form Survey (n = 9). HRQL assessment in pediatric critical care research has been centered around four instruments, though existing literature is limited by minimal longitudinal follow-up and infrequent assessment of baseline HRQL.

A two-step, test-guided Mokken scale analysis, for nonclustered and clustered data

PurposeMokken scale analysis (MSA) is an attractive scaling procedure for ordinal data. MSA is frequently used in health-related quality of life research. Two of MSA's prime features are the scalability coefficients and the automated item selection procedure (AISP). The AISP partitions a (large) set of items into scales based on the observed item scores; the resulting scales can be used as measurement instruments. There exist two issues in MSA: First, point estimates, standard errors, and test statistics for scalability coefficients are inappropriate for clustered item scores, which are omnipresent in quality of life research data. Second, the AISP insufficiently takes sampling fluctuation of Mokken’s scalability coefficients into account.MethodsWe solved both issues by providing point estimates and standard errors for the scalability coefficients for clustered data and by implementing a Wald-based significance test in the AISP algorithm, resulting in a test-guided AISP (T-AISP), that is available for both nonclustered and clustered test scores.ResultsWe integrated the T-AISP into a two-step, test-guided MSA for scale construction, to guide the analysis for nonclustered and clustered data. The first step is performing a T-AISP and select the final scale(s). For clustered data, within-group dependency is investigated on the final scale(s). In the second step, the strength of the scale(s) is determined and further analyses are performed. The procedure was demonstrated on clustered item scores obtained from administering a questionnaire on quality of life in schools to 639 students nested in 30 classrooms.ConclusionsWe developed a two-step, test-guided MSA for scale construction that takes into account sample fluctuation of all scalability coefficients and that can be applied to item scores obtained by a nonclustered or clustered sampling design.