General Measure Research Articles

The commonly used adult generic quality of life instruments for chronic diseases with merits and demerits

Abstract A chronic condition is a physical or emotional wellness condition that endures over a year, causes utilitarian limitations, or requires progressing checking or treatment. The aging of the population has caused a high prevalence of chronic illnesses, such as diabetes, cardiovascular diseases, and cancer. Even though individuals live longer, they often live with disabilities and constant illnesses. Quality of life (QOL) has become a critical idea and focus for examination and practice in the fields of well-being and medication. During the previous years, more examination has focused on patients’ QOL, and the utilization of QOL evaluations has expanded. Health-related QOL (HRQOL) is now mandatory in assessing health outcomes. Searches were conducted using PUBMED, Google Scholar, Web of Science, and Google to find the studies published in peer-reviewed journals. Key search terms included HRQOL, QOL, SF-36, MQOL, COOP chart, SIP, NHP, QWB, EQ-5D, and EuroQol Instrument. Relevant articles were chosen from the search results. This review provides researchers and clinicians with up-to-date practical and comparative information on adult generic QOL instruments to help them decide which the instrument is best suited for their study. It examines the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey, the McGill QoL Questionnaire – Original (MQOL – Original), the Dartmouth Primary Care Cooperative Information Project (COOP) Charts, Sickness Impact Profile (SIP), Nottingham Health Profile (NHP), Quality of Well-Being (QWB) scale, and the EuroQOL 5-Dimension Instrument (EQ 5-D). This paper looks at 7 HR-QOL instruments and finds that there are no consistently “best” or “worst” instruments. The choice to use the generic QOL measure is driven by the reason for the assessment.

Disparities in Health-Related Quality of Life among Adults with Ischemic Heart Disease, Stroke, and Both Conditions

Background: Notable disparities exist in ischemic heart disease (IHD) and stroke outcomes. Studies have identified several causal factors that contribute to these disparities, but few have assessed the disparate quality of life (QOL) among individuals living with IHD, stroke, or both. This study evaluated the impact of IHD, stroke, and both conditions on health-related QOL (HRQOL) and quantified existing disparities. Materials and Methods: Using the data from the 2021 National Health Interview Survey, we calculated the health and activities limitation index — a generic HRQOL measure comprising perceived health and activities limitations — for 29,482 adults. Adjusting for sex, age, income, education, urbanicity, marital status, household size, region of residence, and insurance status, the differences in HRQOL between racial and ethnic groups were estimated as well as racial/ethnic differences in the HRQOL of IHD, stroke, or both conditions. Results: Compared to those with neither condition, individuals with IHD (−0.214, Standard Error (SE)=0.015, stroke (−0.291, SE=0.028), and both (−0.438, SE=0.040) had 20% to 44% lower HRQOL. Blacks (−0.014, SE=0.004) and hispanics (−0.012, SE=0.003) had lower HRQOL compared to whites even after sample heterogeneity. Diagnosis with stroke (−0.182, SE=0.082), IHD (−0.137, SE=0.052), or both (−0.208, SE=0.126) lowered the HRQOL more for black individuals compared to white individuals, while other subgroups showed no statistically significant difference in HRQOL. In general, sex, age, and household composition showed little difference in adjusted HRQOL. Conclusion: While IHD and stroke are independently associated with significantly low HRQOL, their co-occurrence has a substantially negative impact on HRQOL, particularly among minoritized racial groups.

Effect of osteoarthritis and its surgical treatment on patients’ quality of life: a longitudinal study

BackgroundOsteoarthritis (OA) is one of the primary causes of pain and disability worldwide leading to patients having some of the worst health-related quality of life (QOL). The purpose of our study was to investigate the progression of the generic and disease-specific QOL of osteoarthritic patients going through total hip or knee replacement surgery and the factors that might alter the effect of surgery on QOL.MethodsA longitudinal study was performed based on data collected from 120 OA patients who filled in the short version of the WHO’s generic measure of quality of life (WHOQOL-BREF) and the disease-specific Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) before and after surgery.ResultsDomains related to physical health status showed relatively lower scores in patients before surgery. Patients reported a significant increase of QOL after surgery in the WHOQOL-BREF physical domain, especially if they were from the younger group (< 65 years, p = 0.022) or had a manual job (p = 0.008). Disease-specific QOL outcome results indicate that overall patients gained significantly better QOL in all domains of the WOMAC score. Patients with hip OA seemed to have the most benefit of their operation as they reported better outcome in WOMAC pain (p = 0.019), stiffness (p = 0.010), physical function domains (p = 0.011) and total score (p = 0.007) compared to knee OA patients.ConclusionThere was a statistically significant improvement in all domains concerning physical functions in the study population. Patients also reported significant improvement in the social relationship domain, which indicates that OA itself as well as its management might have a profound effect on patients’ life beyond the reduction of their pain.

Psychometric properties and general population reference values for PROMIS Global Health in Hungary

ObjectivesPatient-Reported Outcomes Measurement Information System–Global Health (PROMIS-GH) is a widely used generic measure of health status. This study aimed to (1) assess the psychometric properties of the Hungarian PROMIS-GH and to (2) develop general population reference values in Hungary.MethodsAn online cross-sectional survey was conducted among the Hungarian adult general population (n = 1700). Respondents completed the PROMIS-GH v1.2. Unidimensionality (confirmatory factor analysis and bifactor model), local independence, monotonicity (Mokken scaling), graded response model fit, item characteristic curves and measurement invariance were examined. Spearman’s correlations were used to analyse convergent validity of PROMIS-GH subscales with SF-36v1 composites and subscales. Age- and gender-weighted T-scores were computed for the Global Physical Health (GPH) and Global Mental Health (GMH) subscales using the US item calibrations.ResultsThe item response theory assumptions of unidimensionality, local independence and monotonicity were met for both subscales. The graded response model showed acceptable fit indices for both subscales. No differential item functioning was detected for any sociodemographic characteristics. GMH T-scores showed a strong correlation with SF-36 mental health composite score (rs = 0.71) and GPH T-scores with SF-36 physical health composite score (rs = 0.83). Mean GPH and GMH T-scores of females were lower (47.8 and 46.4) compared to males (50.5 and 49.3) (p < 0.001), and both mean GPH and GMH T-scores decreased with age, suggesting worse health status (p < 0.05).ConclusionThis study established the validity and developed general population reference values for the PROMIS-GH in Hungary. Population reference values facilitate the interpretation of patients’ scores and allow inter-country comparisons.

Patient perspectives on consequences of resection for colorectal cancer: A qualitative study.

Colorectal cancer is diagnosed in approximately 500,000 patients each year in Europe, leading to a high number of patients having to cope with the consequences of resection for colorectal cancer. As treatment options tend to grow, more information on the effects of these treatments is needed to engage in shared decision-making. This study aims to explore the impact of resection for colorectal cancer on patients' daily life. Patients (≥18 years of age) who underwent an oncological colorectal resection between 2018 and 2021 were selected. Purposeful sampling was used to include patients who differed in age, comorbidity conditions, types of (neo)adjuvant therapy, postoperative complications and the presence/absence of a stoma. Semi-structured interviews were conducted, guided by a topic guide. Interviews were fully transcribed and subsequently thematically analysed using the framework approach. Analyses were carried out using the following predefined themes: (1) daily life and activities; (2) psychological functioning; (3) social functioning; (4) sexual functioning; and (5) healthcare experiences. Sixteen patients with a follow-up period of between 0.6 and 4.4 years after surgery were included in this study. Participants reported several challenges experienced because of poor bowel function, a stoma, chemotherapy-induced neuropathy, fear of recurrence and sexual dysfunction. However, they reported these as not interfering much with daily life. Colorectal cancer treatment leads to several challenges and treatment-related health deficits. This is often not recognized by generic patient-reported outcome measures, but the findings on treatment-related health deficits presented in this study contain valuable insights which might contribute to improving colorectal cancer care, shared decision making and value-based health care.

#5510 CKD-ASSOCIATED PRURITUS SEVERITY AND ITS ASSOCIATION WITH BODY DISTRIBUTION AND EQ-5D HEALTH-RELATED QUALITY OF LIFE IN HAEMODIALYSIS PATIENTS

Abstract Background and Aims Chronic Kidney Disease associated pruritus (CKD-aP) is common affecting 40% of people with kidney disease receiving dialysis. It is associated with decreased health-related quality of life (HRQoL) as assessed using disease-specific instruments. A better understanding of how the severity of CKD-aP is related to the distribution of affected body parts and generic of HRQoL assessed using the EQ-5D instrument could improve the identification, assessment, and treatment of CKD-aP including advocating for access to new therapies. Method Prevalent in-centre haemodialysis patients from five centres prospectively completed the EQ-5D-5L HRQoL questionnaires, the severity-based worst itch numeric rating scale (WI-NRS) and multi-dimensional 5-D itch pruritus disease specific quality of life instruments. Latent class mixture models were used to identify clusters of patients with similarly affected body parts as assessed through the 5-D itch and map the pruritus measures to the EQ-5D utility value (1 being perfect health and 0 being dead, heavily skewed). Patient demographics, comorbidities, dialysis prescription and anti-pruritus medications were collected. Results Pruritus data on 485 respondents were obtained. No pruritus was reported in 164 (33.8%), with 117 (24.1%) reporting mild, 123 (25.4%) reporting moderate and 81 (16.7%) reporting severe pruritus. Commonly affected body parts included groin (22%), upper arms (21%), forearms (11%), and back (10%). Anti-pruritus medication use across CKD-aP severity (none to severe) was 40.6%, 38.5%, 36.6% and 55.6%, and varied by body part with 38.8%, 21.0% and 14.5% use in those affected in the upper limbs, groin and lower legs respectively. Latent class analysis identified three groups of patients who had progressively worsening severity and number of body parts affected, but the distribution of affected body parts was relatively constant (left-hand figure) and reduction in EQ-5D by affected body part was similar. Although the WI-NRS and 5-D itch instruments correlated with each other, only the 5-D itch had a strong relationship with EQ-5D-3L: Controlling for age, sex, diabetes, and years receiving dialysis, predicted EQ-5D utility dropped linearly from 0.69 to 0.41 (right-hand figure). Conclusion Contemporary UK data shows CKD-aP remains highly prevalent amongst people with kidney failure on dialysis. Severe CKD-aP was commonly reported despite half of the patients with severe CKD-aP receiving antipruritic medication, illustrating a high unmet need and likely undertreated. Although there were similar reductions in HRQoL, medication use varied by body part and those whose groin is affected may be reporting other body parts to access therapies. High use of CKD-aP medications in none or mild severity may represent more severely affected individuals benefiting from these drugs as the cross-sectional nature of the study means those who reported no pruritus may have had pruritus in the past which resolved in response to the medications prescribed and reported in these analyses. Overall, as it worsens CKD-aP appears to affect a similar distribution of body parts. Pruritus instruments that include domains that are broader than just pruritus severity more closely approximate the EQ-5D generic HRQoL measure and therefore more strongly advocate for the value of treating this unpleasant condition. Funded by CSL Vifor.

Indonesia youth population norms for EQ-5D-Y-3 L, EQ-5D-Y-5 L and the PedsQL generic core scale: lower health related quality of life relates to high economic status and stress

BackgroundThe availability of population norms from generic health-related quality of life (HRQoL) instruments can support the interpretation of health outcomes. This study aimed to provide Indonesian youth population norms for the generic HRQoL measures: EQ-5D-Y-3 L, EQ-5D-Y-5 L, and the PedsQL Generic Core Scales. In addition the opportunity arising from the generation of a large representative sample was taken to explore the relationships between HRQoL, health, and socio-economic factors.MethodsA representative sample of 1103 Indonesian children (aged 8–16 years) completed EQ-5D-Y-3 L, EQ-5D-Y-5 L, the PedsQL Generic Core Scales, and questions related to demographic data and self-reported health status. A stratified quota sampling design was used to represent Indonesian children in terms of residence, age, gender, and geographical area. Family expenses per capita per month were retrieved from parents to determine a child’s economic status.ResultsThe total sample was representative of the Indonesian youth general population. The proportions of participants who reported problems were 43.35% (EQ-5D-Y-3 L), 44.10% (EQ-5D-Y-5 L), and 94.93% (PedsQL Generic), with 31.7% of children reporting health complaints. Older children (13–16 years) reported more problems than younger children (8–12 years). Children living in urban areas reported more problems than children living in rural areas. The lowest value health state reported was ‘12332’ (valued at 0.54), and the minimum EQ VAS score was 60.00. Moderate correlations were found between EQ-5D-Y-3 L values to EQ VAS scores and to PedsQL Total Score. Hierarchical regression analysis showed that females, older age, and having health complaints contributed to a lower level of HRQoL as measured by EQ-5D-Y-3 L values, EQ VAS, and PedsQL Total Score. Remarkably, children with high economic status had lower EQ VAS and PedsQL Total Scores. Among symptoms, ‘having stress’ had the largest influence with respect to lower EQ-5D-Y-3L values, EQ VAS, and PedsQL Total Score.ConclusionsPopulation norms for children’s HRQoL as measured by EQ-5D-Y-3 L, EQ-5D-Y-5 L, and the PedsQL Generic Scales are now available for Indonesia. Age, gender, economic status, and health complaints were related to children’s HRQoL. These results provide a basis for health studies and health policy for the youth population of Indonesia.

Kernel-based Nonlinear Manifold Learning for EEG-based Functional Connectivity Analysis and Channel Selection with Application to Alzheimer’s Disease

Dynamical, causal, and cross-frequency coupling analysis using the electroencephalogram (EEG) has gained significant attention for diagnosing and characterizing neurological disorders. Selecting important EEG channels is crucial for reducing computational complexity in implementing these methods and improving classification accuracy. In neuroscience, measures of (dis) similarity between EEG channels are often used as functional connectivity (FC) features, and important channels are selected via feature selection. Developing a generic measure of (dis) similarity is important for FC analysis and channel selection. In this study, learning of (dis) similarity information within the EEG is achieved using kernel-based nonlinear manifold learning. The focus is on FC changes and, thereby, EEG channel selection. Isomap and Gaussian Process Latent Variable Model (Isomap-GPLVM) are employed for this purpose. The resulting kernel (dis) similarity matrix is used as a novel measure of linear and nonlinear FC between EEG channels. The analysis of EEG from healthy controls (HC) and patients with mild to moderate Alzheimer’s disease (AD) are presented as a case study. Classification results are compared with other commonly used FC measures. Our analysis shows significant differences in FC between bipolar channels of the occipital region and other regions (i.e. parietal, centro-parietal, and fronto-central) between AD and HC groups. Furthermore, our results indicate that FC changes between channels along the fronto-parietal region and the rest of the EEG are important in diagnosing AD. Our results and its relation to functional networks are consistent with those obtained from previous studies using fMRI, resting-state fMRI and EEG.

Does EQ-5D Tell the Whole Story? Statistical Methods for Comparing the Thematic Coverage of Clinical and Generic Outcome Measures, With Application to Breast Cancer

ObjectivesThis study aimed to develop the following: (1) methods for assessing claims in any specific application that a generic outcome measure, such as EQ-5D is deficient in its coverage of 1 or more specified domains, and (2) a simple method of judging whether any such deficiency is likely to be quantitatively important enough to call into question evaluations based on the generic instrument. Also to demonstrate the applicability of the methods in the important area of breast cancer. MethodsThe methodology requires a data set with observations from a generic instrument (eg, EQ-5D) and also a more comprehensive clinical instrument (eg, FACT-B [Functional Assessment of Cancer Therapy – Breast]). A standardized 3-component statistical analysis is proposed for investigating the claim that the generic measure inadequately captures some specified dimension covered by the latter instrument. A theoretically based upper bound on the bias induced by deficient coverage is derived based on the assumption that the designers of the (k-dimensional) generic instrument did succeed in identifying the k most important domains. ResultsData from the MARIANNE breast cancer trial were analyzed and results suggested that impacts on personal appearance and relationships may be inadequately represented by EQ-5D. Nevertheless, the indications are that the bias in quality-adjusted life-year differences from deficient coverage by EQ-5D is likely to be modest. ConclusionsThe methodology offers a systematic approach to determining whether there is clear evidence consistent with any claim that a generic outcome measure such as EQ-5D misses an important specific domain. The approach is readily implementable using data sets that are available in many randomized controlled trials.

PCR8 Understanding and Assessing the Patient Experience of Symptoms for Polycystic Liver Disease (PLD): Development of a New Disease-Specific Symptom Patient-Reported Outcome Measure (PROM)

PLD is a rare condition in which multiple cysts develop in the liver. Approximately 20% of patients experience a high symptom burden. Limited patient-centered research exists for this condition, and much of the patient-reported data results from generic measures. To address this gap, a disease-specific PROM, the PLD-Symptom was developed.

PCR59 Understanding and Assessing the Patient-Reported Impact of Polycystic Liver Disease (PLD) on Functioning and Well-Being: Development of a New Disease-Specific Patient-Reported Outcome Measure (PROM)

PLD is a rare liver disease. Research on PLD health-related quality of life impacts is limited and mainly assessed using generic measures. Impacts may include limited mobility, decreased productivity, and emotional distress. To address this gap, the PLD-Impact (PLD-I), a disease-specific PROM, was developed.

Validation of the 7-Item Domain-General Gambling Harm Scale (DGHS-7)

IntroductionGambling can cause negative consequences affecting finances, work/study, physical and mental health, relationships, law abidingness, and the community. Although existing measures enable investigations of gambling harms, there is still a need for a brief measure covering the full range of gambling related harms. MethodsWe validated a 7-item domain-general harm scale (DGHS-7) using data from a cross-sectional survey of United Kingdom residents reporting gambling within the last 12 months (n = 2558, 62.4% women, mean age 40.1 years (SD = 12.5)). The DGHS-7 was investigated in terms of factor structure, measurement invariance, and convergent validity with a comprehensive 72-item checklist of gambling harm, the Short Gambling Harms Screen (SGHS), and the Problem Gambling Severity Index (PGSI). Discriminative validity was checked against the Personal Wellbeing Index (PWI). Internal consistency was also calculated. ResultsConfirmatory factor analysis supported a one-factor solution (χ2 = 136.991, df = 14, χ2/df = 9.785, p <.001, CFI = 0.999, RMSEA = 0.059, 90% CI [0.050, 0.068]). Measurement invariance was supported for gender and binary categorization of age and income (ΔCFI = 0.001). The DGHS-7 correlated strongly with the 72-item checklist (rs = 0.824), the SGHS (rs = 0.793), the PGSI (rs = 0.768), and moderately with the PWI (rs = -0.303). Cronbach’s alpha = 0.91 and ordinal alpha = 0.96 indicated good internal consistency. ConclusionsPsychometric support was found for a brief measure covering all recognized domains of gambling harm. The DGHS-7 is useful for researchers needing a generic and short measure for epidemiological and other studies calling for short scales.

Detailed Modeling and In-Situ Calorimetric Verification of Three-Phase Sparse NPC Converter Power Semiconductor Losses

The three-phase three-level (3-L) Sparse Neutral Point Clamped Converter (SNPCC) combines a 3-L matrix stage and a three-phase two-level inverter stage to generate 3-L switched output voltages with a reduced transistor count (10 instead of 12 or 18) compared to the classical 3-L NPCC or 3-L active NPCC structure, targeting variable-speed drive systems with low ripple of the motor phase currents or bidirectional three-phase PFC rectifier systems with reduced boost inductor volume. This paper analyzes and experimentally characterizes the performance of an IGBT-based three-phase 3-L SNPCC converter, and describes for the first time a hybrid current commutation effect between inverter-stage diodes and matrix-stage IGBTs that occurs when operating with lower modulation indices and leads to increased switching losses (up to 20%). The proposed new semiconductor loss modeling approach accounts for this effect successfully, which is verified (< 10% error) on an 800V <sub xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink">dc</sub> , 7.5kW SNPCC hardware demonstrator using a new in-situ calorimetric method that facilitates accurate stage-level semiconductor loss measurements. Heat spreading effects caused by the asymmetrical losses injection and thermal decoupling between two in-situ loss measurement blocks are carefully checked with FEM simulations. Further, an experimental evaluation of common-mode and differential-mode high-frequency voltage-time area ripples (as a generic measure for the required filtering effort) for three typical symmetrical and asymmetrical modulation switching state sequences is provided together with the semiconductor loss characterization. Utilizing a low-switching-loss asymmetric modulation scheme that operates the 3-L matrix stage and the 2-L inverter stage with effective switching frequencies of 16kHz and 5.3kHz, respectively, the 3-L SNPCC demonstrator finally achieves a high rated-power (7.5kW, load current phase shift ϕ = 0) semiconductor efficiency of 98.8%.

Massive and Repeated Molecular Testing a Tool in the Pandemic Covid-19 Prevention Management System

The management of a crisis must be integrated into an ergonomic framework of the necessary measures. These measures need to be, efficient and providing the yield according to expectations, with minimal impact of the people and provide to change crisis processes to the normality. Crisis management involves applying pre-existing measures, preparatory for the entry of the crisis, for deployment (to eliminate the causes and to diminish the effects), for adaptation. In addition to generic measures, it is necessary (like the preventive system of management of occupational safety and health - OSH), to use appropriate tools: risk assessment, feedback for the measures taken, and for implementation of adaptive measures. These tools must be used periodically or updated with any change/evolution of the situation. In the situation of the COVID-19 crisis, a gold instrument. Similar with some findings in the literature, trivalent for evaluation, verification, adaptation, is the massive and periodic testing for suspects. When we have a new virus, the whole population is suspected because there is no immunity already created or administered. The paper aims, to logically associate the preventive ergonomic management system already known by OSH, with ergonomic management system of crises, through scientific research, statistic arguments, which support the massive implementation of molecular.

Development and Validation of a Brief Version of the Vanderbilt Fatigue Scale for Adults: The VFS-A-10.

Listening-related fatigue can be a significant problem for adults who struggle to hear and understand, particularly adults with hearing loss. However, valid, sensitive, and clinically useful measures for listening-related fatigue do not currently exist. The purpose of this study was to develop and validate a brief clinical tool for measuring listening-related fatigue in adults. The clinical scale was derived from the 40-item version of the Vanderbilt Fatigue Scale for Adults (VFS-A-40), an existing, reliable, and valid research tool for measuring listening-related fatigue. The study consisted of two phases. Phase 1 ( N = 580) and Phase 2 ( N = 607) participants consisted of convenience samples of adults recruited via online advertisements, clinical records review, and a pool of prior research participants. In Phase 1, results from item response theory (IRT) analyses of VFS-A-40 items were used to identify high-quality items for the brief (10-item) clinical scale: the VFS-A-10. In Phase 2, the characteristics and quality of the VFS-A-10 were evaluated in a separate sample of respondents. Dimensionality was evaluated using exploratory factor analyses (EFAs) and item quality and characteristics were evaluated using IRT. VFS-A-10 reliability and validity were assessed in multiple ways. IRT reliability analysis was used to examine VFS-A-10 measurement fidelity. In addition, test-retest reliability was assessed in a subset of Phase 2 participants ( n = 145) who completed the VFS-A-10 a second time approximately one month after their initial measure (range 5 to 90 days). IRT differential item functioning (DIF) was used to assess item bias across different age, gender, and hearing loss subgroups. Convergent construct validity was evaluated by comparing VFS-A-10 responses to two other generic fatigue scales and a measure of hearing disability. Known-groups validity was assessed by comparing VFS-A-10 scores between adults with and without self-reported hearing loss. EFA suggested a unidimensional structure for the VFS-A-10. IRT analyses confirmed all test items were high quality. IRT reliability analysis revealed good measurement fidelity over a wide range of fatigue severities. Test-retest reliability was excellent ( rs = 0.88, collapsed across participants). IRT DIF analyses confirmed the VFS-A-10 provided a valid measure of listening-related fatigue regardless of respondent age, gender, or hearing status. An examination of associations between VFS-A-10 scores and generic fatigue/vigor measures revealed only weak-to-moderate correlations (Spearman's correlation coefficient, rs = -0.36 to 0.57). Stronger associations were seen between VFS-A-10 scores and a measure of perceived hearing difficulties ( rs = 0.79 to 0.81) providing evidence of convergent construct validity. In addition, the VFS-A-10 was more sensitive to fatigue associated with self-reported hearing difficulties than generic measures. It was also more sensitive than generic measures to variations in fatigue as a function of degree of hearing impairment. These findings suggest that the VFS-A-10 is a reliable, valid, and sensitive tool for measuring listening-related fatigue in adults. Its brevity, high sensitivity, and good reliability make it appropriate for clinical use. The scale will be useful for identifying those most affected by listening-related fatigue and for assessing benefits of interventions designed to reduce its negative effects.

Quality of life of children and young people with anterior chest wall deformity: a systematic review of the literature

ObjectiveThe aim of this study was to evaluate the current evidence regarding the quality of life (QoL) of children and young people with anterior chest wall deformity (ACWD).MethodsUsing a defined...

Quality of Life in Caregivers of Patients with Brain Tumours: A Systematic Review and Thematic Analysis

Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support.

Generating EQ-5D-3L health utility scores from the Edinburgh Postnatal Depression Scale: a perinatal mapping study

BackgroundPerinatal depression (PND) describes depression experienced by parents during pregnancy or in the first year after a baby is born. The EQ-5D instrument (a generic measure of health status) is not often collected in perinatal research, however disease-specific measures, such as the Edinburgh Postnatal Depression Scale (EPDS) are widely used. Mapping can be used to estimate generic health utility index values from disease-specific measures like the EPDS.ObjectiveTo develop a mapping algorithm to estimate EQ-5D utility index values from the EPDS.MethodsPatient-level data from the BaBY PaNDA study (English observational cohort study) provided 1068 observations with paired EPDS and EQ-5D (3-level version; EQ-5D-3L) responses. We compared the performance of six alternative regression model types, each with four specifications of covariates (EPDS score and age: base, squared, and cubed). Model performance (ability to predict utility values) was assessed by ranking mean error, mean absolute error, and root mean square error. Algorithm performance in 3 external datasets was also evaluated.ResultsThere was moderate correlation between EPDS score and utility values (coefficient: – 0.42). The best performing model type was a two-part model, followed by ordinary least squared. Inclusion of squared and cubed covariates improved model performance. Based on graphs of observed and predicted utility values, the algorithm performed better when utility was above 0.6.ConclusionsThis direct mapping algorithm allows the estimation of health utility values from EPDS scores. The algorithm has good external validity but is likely to perform better in samples with higher health status.

Measuring Quality of Life in Residential Aged Care Using the EQ-5D-5L: A Cross-Sectional Study on the Impact of Cognition Level and Proxy Perspective on Interrater Agreement

Quality of life (QoL) is an important outcome in aged care, but self-report is not always possible due to the high prevalence of cognitive impairment in older aged care residents. This study aims to assess the impact of family member proxy perspective (proxy-proxy or proxy-person) on interrater agreement with resident self-report by different cognition levels. The influence of proxy perspective and cognition level is a significant gap in the extant literature which this study seeks to address. A cross-sectional study was undertaken with residents classified into cognition subgroups according to the Mini Mental State Examination. Residents completed the self-report EQ-5D-5L, a well-established generic measure of health-related quality of life (HRQoL). Family member proxies completed EQ-5D-5L proxy version 1 (proxy-proxy perspective, where the proxy responds based on their own opinions) and proxy version 2 (proxy-person perspective, where the proxy responds as they believe the person would). Interrater agreement was assessed using the concordance correlation coefficient (CCC) for utility scores and the weighted kappa for dimension-level responses. Sixty-three residents (n = 22 no cognitive impairment, n = 27 mild impairment, and n = 14 moderate impairment) and proxies participated. EQ-5D-5L utility scores were lower for proxies compared with residents (self-report = 0.522, proxy-proxy = 0.299, and proxy-person = 0.408). Interrater agreement with self-report was higher for proxy-person (CCC = 0.691) than for proxy-proxy (CCC = 0.609). Agreement at the dimension level was higher for more easily observable dimensions, such as mobility, compared to less observable dimensions, such as anxiety/depression. Resident self-reported and proxy family member-reported HRQoL assessments, using the EQ-5D-5L, are different but may be more closely aligned when the proxy is specifically guided to respond from the person’s perspective. Further research is needed to address the impact of divergences in self-report and proxy-report ratings of HRQoL for quality assessment and economic evaluation in aged care.

Experiences of shifts in physiotherapy for rheumatoid arthritis over time – an autoethnography

ABSTRACT Introduction Several shifts in physiotherapy treatment of patients with rheumatoid arthritis (RA) have occurred over time. Objective This paper aims to identify shifts in physiotherapy practice for patients with RA based on the author’s work experiences from the 1980s until today at two Norwegian rheumatism hospitals, and to explore why shifts may have happened. Methods A narrative was developed by describing events making a difference, categorizing, and ordering them with the help of narrative analysis and a sensitizing analytic lens on discourses. Results The storyline from the 1980s to approximately the turn of the millennium is called ‘Shifts determined mainly by clinical context-driven events’ which occurred in response to medical advances and physiotherapists’ clinical experiences. These shifts were later justified by physiotherapists’ research in the clinical context. The other storyline covers mainly the 2000s and is called ‘Shifts increasingly determined by events beyond clinical physiotherapy context.’ They include adjustments to further medical advances and implementation of biopsychosocial understanding of disease at the hospital, and to external research-based recommendations, health reforms, and economy. Conclusion These processes have moved physiotherapy practice at the hospital from mainly providing individualized remedial and rehabilitative physiotherapy for the purpose to normalize physical function to an increasing focus on generic health measures for the purposes of health promotion and cardiovascular disease prevention. However, this shift may not fully match the complex needs presented by patients in disease remission with unrelenting fatigue and work inability and those who have multiple functional challenges and comorbidities.