Quality Life Research Papers - Academia.edu (original) (raw)

2025, Quality of Life Research

Background Health-related quality of life (HRQoL) measures are of interest because they can be used to describe health of populations and represent a broader health outcome for population health analyses than mortality rates or life... more

Background Health-related quality of life (HRQoL) measures are of interest because they can be used to describe health of populations and represent a broader health outcome for population health analyses than mortality rates or life expectancy. The most widely used measure of HRQoL for deriving estimates of health-adjusted life expectancy is the Health Utilities Index Mark 3 (HUI3). The HUI3 is available in most national surveys administered by Statistics Canada, and has been used as part of a microsimulation model to examine the impact of neurological conditions over the life course. Persons receiving home care and nursing home services are often not well-represented in these surveys; however, interRAI assessment instruments are now used as part of normal clinical practice in these settings for nine Canadian provinces/territories. Building on previous research that developed a HUI2 crosswalk for the interRAI assessments, the present study examined a new interRAI HRQoL index crosswalked to the HUI3. Methods interRAI and survey data were used to examine the distributional properties of global and domain-specific inter-RAI HRQoL and HUI3 index scores, respectively. Three populations were considered: well-elderly persons not receiving home care, home care clients and nursing home residents. The mean HUI3 and interRAI HRQoL index global scores declined from independent healthy older persons to home care clients, followed by nursing home residents. For the home care and nursing home populations, the interRAI HRQoL global estimates tended to be lower than HUI3 global scores obtained from survey respondents. While there were some statistically significant age, sex and diagnostic group differences in global scores and within attributes, the most notable differences were between populations from different care settings. Discussion The present study provides strong evidence for the validity of the interRAI HRQoL based on comparisons of distributional properties with those obtained with survey data based on the HUI3. The results demonstrate the importance of admission criteria for home care and nursing home settings, where function plays a more important role than demographic or diagnostic criteria. The interRAI HRQoL has a distinct advantage because it is gathered as part of normal clinical practice in care settings where interRAI instruments are mandatory and are used to assess all eligible persons in those sectors. In particular, those with severe cognitive and functional impairments (who tend to be under-represented in survey data) will be evaluated using the interRAI tools. Future research should build on this work by providing direct, person-level comparisons of interRAI HRQoL index and HUI3 scores, as well as longitudinal analyses to examine responsiveness to change.

2025, International Journal of Environmental Research and Public Health

2025

with a prevalence as high as 38%. Strictures also develop in the mid-pouch. Mid-pouch strictures are less well understood in terms of aetiology, incidence, management and outcomes. They are of particular interest from a surgical... more

with a prevalence as high as 38%. Strictures also develop in the mid-pouch. Mid-pouch strictures are less well understood in terms of aetiology, incidence, management and outcomes. They are of particular interest from a surgical perspective as they are hard to access at EUA and therefore alternative management options need to be explored. The management of pouch strictures include medical options, such as immunosuppressant and biological therapy, endoscopic management with balloon dilatation, or surgical management including, Hegar dilatation, stricturoplasty, pouch revision, diversion or pouch excision. There are limited data on the success of these techniques. Methods Patients were identified between January 2008 to January 2017. Patients were identified from the endoscopy, biologics and pouch databases at our institution. Review of the clinical records was used to determine those who had pouch strictures. The primary outcome measure was avoidance of pouch failure. Pouch failure was defined as the need for defunctioning or pouch removal at last follow-up. Results Forty-nine patients with pouch strictures were included in the study. Initial therapy for the treatment of pouch strictures was associated with pouch retention in a quarter of those treated with biological therapy, 87% for Hegar dilatations and 80% for balloon dilatation with median follow-ups of 31 months, 16 months and 12 months respectively. Conclusion Hegar dilatation should be considered the initial management approach for pouch-anal anastomotic strictures. Endoscopic balloon dilatation should be considered as first line therapy for both mid-pouch and inlet strictures. Limited evidence suggests that inflammatory inlet strictures are likely to be the most responsive to biological therapy.

2025

Background Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA,... more

Background Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making model. We sought to explore families’ decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs.Methods We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8–18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States,...

2025, Psycho-oncology

Dimensions of emotional adjustment, perceived health status and role function were compared by three medical groups: breast conserving versus non-breast conserving surgery; positive versus negative nodes; and post-surgical adjuvant... more

Dimensions of emotional adjustment, perceived health status and role function were compared by three medical groups: breast conserving versus non-breast conserving surgery; positive versus negative nodes; and post-surgical adjuvant therapy. Intact data series were obtained at 7-10 days, at 1.2, 3 and 6-months, and 1 year post-surgery for 93 women. The overall mean scores for measures of emotional adjustment, perceived health status, and role function did not differ significantly between breast-conserving and non-breast-conserving groups. However, there was a significant change over time with both surgical groups showing improved adjustment. Although there were no statistically significant differences between the node status groups in mean scores on the adjustment variables, the overall patterns over time were analogous to that of the surgical groups. In comparing post-surgical adjuvant therapy groups, significant differences in mean scores on the adjustment outcomes were noted mainly between the chemotherapy versus no adjuvant therapy groups at 3 and 6 months post-surgery.

2025, Quality of Life Research

Objectives To assess the health-and oral health-related quality of life of preschool children with cerebral palsy (CP) and to determine their inter-relationship between the two quality of life measures. Methods A total of 144 preschool... more

Objectives To assess the health-and oral health-related quality of life of preschool children with cerebral palsy (CP) and to determine their inter-relationship between the two quality of life measures. Methods A total of 144 preschool children with and without CP were invited to participate in the case-control study. Health-related quality of life was assessed by the Pediatric Quality of Life Inventory Version 4.0 (PedsQL TM 4.0) and oral health-related quality of life by the Early Childhood Oral Health Impact Scale (ECOHIS). Differences in PedsQL TM 4.0 and ECOHIS scores were determined between the groups, and correlation between PedsQL and ECOHIS were explored. Results Significant differences in overall scores of Peds-QL TM 4.0 (P \ 0.001) and in overall scores of ECOHIS (P \ 0.05) were apparent between the two groups. In terms of health-and oral health-related quality of life, preschool children with CP fared worse than the age-gender-matched control group. There was a positive albeit weak correlation (r = 0.203, P \ 0.05) between PedsQL TM 4.0 and ECOHIS scores. Conclusions Differences in health-and oral health-related quality of life exist among preschool children with CP. Correlation between health-and oral health-related quality of life could at best be described as weak.

2025, Quality of Life Research

Objectives: To assess the content validity of traditional oral health status scales as measures of oral health related quality of life (OHQOL), based on a general public's perception of the most important ways in which oral health affects... more

Objectives: To assess the content validity of traditional oral health status scales as measures of oral health related quality of life (OHQOL), based on a general public's perception of the most important ways in which oral health affects quality of life (QoL). Methods: A nationwide United Kingdom study involving a random probability sample of 1778 adults. Data were collected by face-to-face interviews in participants homes. Results: Most 75% (1332) perceived oral health as being important to QoL. Among them, 53% (699/1332) identified oral health's importance to QoL as being in a positive manner. Existing scales predominantly fail to include this dimension. The general public ranked oral health's importance to QoL through a range of physical, social and psychological domains. Most frequently though affecting eating or comfort; domains considered by all instruments. Other domains/ways are presented. It is apparent that even when some of the multidomain scales are employed, they frequently omit items that the public perceives as being most important to QoL. Conclusion: The study raises concerns about the appropriateness of utilising many of the existing oral health status scales as measures of OHQOL because the concepts do not appear to be interchangeable.

2025, Quality of Life Research

Objective: To assess the impact of PD on informal caregivers of patients and identify the main factors related to caregiver strain. Patients and methods: Pairs of PD patients and their caregivers. Evaluation by neurologists included the... more

Objective: To assess the impact of PD on informal caregivers of patients and identify the main factors related to caregiver strain. Patients and methods: Pairs of PD patients and their caregivers. Evaluation by neurologists included the Hoehn and Yahr, Schwab and England, UPDRS (parts 1-3), ISAPD, and Pfeiffer's SPMSQ rating scales. Patients completed the Euro-QoL 5D, PDQ-8, and Hospital Anxiety and Depression Scale. The SQLC was used to assess caregivers' quality of life (QoL), with caregivers, in turn, applying the Euro-QoL and PDQ-8 to assess patients' health-related quality of life (HRQoL). Multiple linear regression models were fitted to ascertain factors linked to the SQLC. Results: Significant correlations were in evidence between the following scores: SQLC and clinical rating scales and SQLC and patients' HRQoL. Based on multiple regression analysis, patients' functional state (ADL) proved to be the main predictor of caregivers' QoL. Self-and caregiver-assessed patients' HRQoL also proved to be a relevant factor. Conclusions: (1) Patients' functional state was significantly related to caregivers' psychosocial burden; (2) patients' HRQoL proved to be an additional factor linked to caregiver QoL; (3) improvement of patient disability and HRQoL might alleviate caregiver strain.

2025, Quality of life research

Purpose Patient reported outcome measures, such as the EQ-5D-5L, provide a measure of self-perceived health status or health-related quality of life. Understanding the consumer acceptability of a patient reported outcome measure can help... more

Purpose Patient reported outcome measures, such as the EQ-5D-5L, provide a measure of self-perceived health status or health-related quality of life. Understanding the consumer acceptability of a patient reported outcome measure can help to decide about its implementation across a healthcare organisation and possibly increase the likelihood of its use in clinical care. This study established the acceptability of the EQ-5D-5L from the perspective of clients receiving healthcare, and determined if acceptability varied by client sub-types. Methods A cross-sectional survey explored clients' experience of the EQ-5D-5L. Eligible clients were aged ≥ 18 years and completed the EQ-5D-5L on admission and discharge to one of two multi-disciplinary community health services. Likert scale items explored acceptability, and open-ended questions determined if the EQ-5D-5L reflects experience of illness. Associations between acceptability and client characteristics were established using χ 2 test. Open-ended questions were analysed using content analysis. Results Most of the 304 clients (mean age 70 years, SD 16) agreed that the EQ-5D-5L: was easy to use/understand (n = 301, 99%) and useful (n = 289, 95%); improved communication with their therapist (n = 275, 90%); and made them feel more in control of their health (n = 276, 91%). Most clients also agreed that they wished to continue using the EQ-5D-5L (n = 285, 93%). Clients aged ≥ 60 years reported lower acceptability. Clients noted that the EQ-5D-5L did not capture experience of illness related to fatigue, balance/falls, cognition, and sleep. The EQ-5D-5L is acceptable for use in care but does not capture all aspects of health relevant to clients, and acceptability varies by subgroup. Patient reported outcome measures • Quality of life • Outcome assessment • Quality of health care • EQ-5D-5L * David A. Snowdon

2025, Quality of Life Research

To describe the major findings in the literature regarding associations between biological and genetic factors and social functioning, paying special attention to: (1) heritability studies on social functioning and related concepts; (2)... more

To describe the major findings in the literature regarding associations between biological and genetic factors and social functioning, paying special attention to: (1) heritability studies on social functioning and related concepts; (2) hypothesized biological pathways and genetic variants that could be involved in social functioning, and (3) the implications of these results for quality-of-life research.

2025, Quality of Life Research

Purpose-Obesity is associated with impaired quality of life (QoL), but less is known about physical activity. We investigated how decreases in body mass index (BMI) and increases in activity affect obesity-specific QoL and potential... more

Purpose-Obesity is associated with impaired quality of life (QoL), but less is known about physical activity. We investigated how decreases in body mass index (BMI) and increases in activity affect obesity-specific QoL and potential gender differences in associations. Methods-In a large worksite-randomized trial of a multilevel intervention on diet and physical activity behaviors, we conducted a cohort analysis at two years of follow-up. Self-reported activity and Obesity and Weight-Loss Quality Of Life (OWLQOL) were analyzed for individual-level associations using linear mixed models accounting for random worksite effects. Results-Gender modified the BMI-OWLQOL relationship, so analyses were conducted for males and females separately. Adjusting for demographic confounders, baseline OWLQOL, and several worksite-level variables including intervention arm, a 1.9 unit decrease in BMI (the interquartile range) was associated with an OWLQOL increase of 1.7 (95% CI: 1.2, 2.2) in males and 3.6 (95% CI: 3.2, 4.0) in females. Similarly, a 23 unit increase in physical activity score was associated with an OWLQOL increase of 0.9 (95% CI: 0.5, 1.4) in males and 1.6 (95% CI: 1.0, 2.3) in females. Physical activity associations were attenuated when adjusting for change in BMI, but remained significant for women (mean BMI 27.8 kg/m 2 ). Conclusions-This is the first study to demonstrate that increasing physical activity may improve obesity-specific QoL to a greater extent in women, particularly among overweight women, independent of BMI. Results may inform the design of interventions tailored to women targeting well-being through messages of increasing physical activity.

2025, Quality of Life Research

Purpose Satisfaction with care is important for quality assurance in oncology, but may differ between patients and caregivers. We aimed to assess satisfaction with cancer care in paired analyses of these groups, examine differences... more

Purpose Satisfaction with care is important for quality assurance in oncology, but may differ between patients and caregivers. We aimed to assess satisfaction with cancer care in paired analyses of these groups, examine differences between them, and identify areas for potential intervention. Methods Patients with advanced cancer and their caregivers were recruited from 24 medical oncology outpatient clinics. Satisfaction with care was measured using the FAMCARE (caregivers) and FAMCARE-Patient (patients) scales. Quality of life (QOL) was measured with the Caregiver QOL Index-Cancer (caregivers) and FACIT-Sp (patients). The paired t test assessed differences in overall satisfaction and individual scores. In addition, scores were dichotomized into satisfied versus not satisfied, and McNemar's test was used to assess differences. Multivariable linear regression analyses assessed predictors of patient and caregiver satisfaction, respectively. Results Satisfaction ratings in the 191 patient-caregiver pairs were high, but patients were more satisfied (p = 0.02). Both groups were least satisfied with information regarding prognosis and pain management. Caregivers were significantly less satisfied than patients regarding coordination of care (p = 0.001) and family inclusion in treatment/care decisions (p \ 0.0001). In both groups, higher education was associated with lower satisfaction (p B 0.01), while better QOL predicted greater satisfaction (p \ 0.0001). Conclusions Communication regarding pain control and prognosis were identified as key areas for improvement. Caregivers seem to desire greater involvement in treatment decisions, though this must be balanced with patient autonomy.

2025, Quality of Life Research - QUAL LIFE RES

Objective: To determine the role of health status, personality and coping style, on self-report health-related quality of life (QoL). Methods: Participants were HIV seropositive individuals at all disease stages from three samples (a)... more

Objective: To determine the role of health status, personality and coping style, on self-report health-related quality of life (QoL). Methods: Participants were HIV seropositive individuals at all disease stages from three samples (a) gay/bisexual men from the UK, (b) injecting drug users from the UK, (c) injecting drug users from Italy. All participants completed questionnaires evaluating QoL, personality, coping style and social support. Explicit models of the relationships between the measured variables based on a review of the literature were tested using structural equation modelling. Results: Health status was modestly associated with the physical but not the psychological aspects of QoL (ß = 0.44). Neuroticism was strongly associated with psychological QoL (ß = -0.73) but only weakly with physical QoL (ß = -0.21). The samples did not differ in either the pattern or the magnitude of these relationships. Mediating factors such as coping style, social support and other personali...

2025, Quality of Life Research

Although quality of life evaluations are widely used throughout medicine, relatively little is known about the psychological processes involved in making these judgements. What is known is that quality of life judgements are not... more

Although quality of life evaluations are widely used throughout medicine, relatively little is known about the psychological processes involved in making these judgements. What is known is that quality of life judgements are not straightforwardly associated with objective measures of health status or clinician ratings. In particular, patient affect appears to be associated with quality of life ratings but whether

2025, Quality of Life (Banja Luka) - APEIRON

European Centre for Disease Prevention and Control (ECDC) and World Health Organization (WHO) initiate public awareness campaign about antimicrobial substances and their rational uses due to the increasing prevalence of multidrug... more

European Centre for Disease Prevention and Control (ECDC) and World Health Organization (WHO) initiate public awareness campaign about antimicrobial substances and their rational uses due to the increasing prevalence of multidrug resistant strains of bacteria. The objective of this study was to evaluate antimicrobial activity of Hypericum perforatum essential oil and reference antimicrobial drugs against the growth of certain bacteria Staphylococcus aureus, Salmonella typhimurium i Pseudomonas aeruginosa.

2025, Quality of Life Research

Purpose Understanding the relationship between healthrelated quality of life (HRQoL) and long-term unmet needs is important for guiding services to optimise life following stroke. We investigated whether HRQoL between 90 and 180 days... more

Purpose Understanding the relationship between healthrelated quality of life (HRQoL) and long-term unmet needs is important for guiding services to optimise life following stroke. We investigated whether HRQoL between 90 and 180 days following stroke was associated with long-term unmet needs. Methods Data from Australian Stroke Clinical Registry (AuSCR) registrants who participated in the Australian Stroke Survivor Needs Survey were used. Outcome data, including the EQ-5D, are routinely collected in AuSCR between 90 and 180 days post-stroke. Unmet needs were assessed at a median of 2 years and categorised into: health; everyday living; work/leisure; and support domains. Multivariable regression was used to determine associations between the EQ-5D dimensions and the likelihood of experiencing unmet needs and the visual analogue scale (VAS) (rating 0-100) and number of reported unmet needs. Results In total, 173 AuSCR registrants completed the Needs Survey (median age 69 years, 67 % male; 77 % ischaemic stroke). VAS scores were negatively associated with the number of reported long-term unmet needs [irr 0.98, (95 % CI 0.97, 0 99) p \ 0.001]. Having EQ-5D activity limitations was associated with unmet living needs (aOR 4.5, 95 % CI 1.1, 18.8). Requiring living supports at 90-180 days was associated with unmet health needs (aOR 4.9, 95 % CI 1.5, 16.1). Those with pain at 90-180 days were less likely to report unmet health (aOR 0.09, 95 % CI 0.02, 0.4) and support needs (aOR 0.2, 95 % CI 0.06, 0.6). Conclusion Routinely collected HRQoL data can identify survivors at risk of experiencing long-term unmet needs. This information is important for targeting service delivery to optimise outcomes following stroke.

2025, Quality of Life Research

Purpose Approximately 30-50% of survivors experience problems with anxiety or depression post-stroke. It is important to understand the factors associated with post-stroke anxiety or depression to identify effective interventions. Methods... more

Purpose Approximately 30-50% of survivors experience problems with anxiety or depression post-stroke. It is important to understand the factors associated with post-stroke anxiety or depression to identify effective interventions. Methods Patient-level data from the Australian Stroke Clinical Registry (years 2009-2013), from participating hospitals in Queensland (n = 23), were linked with Queensland Hospital Emergency and Admission datasets. Self-reported anxiety or depression was assessed using the EQ-5D-3L, obtained at 90-180 days post-stroke. Multivariable multilevel logistic regression, with manual stepwise elimination of variables, was used to investigate the association between self-reported anxiety or depression, patient factors and acute stroke processes of care. Comorbidities, including prior mental health problems (e.g. anxiety, depression and dementia) coded in previous hospital admissions or emergency presentations using ICD-10 diagnosis codes, were identified from 5 years prior to stroke event. Results 2853 patients were included (median age 74; 45% female; 72% stroke; 24% transient ischaemic attack). Nearly half (47%) reported some level of anxiety or depression post-stroke. The factors most strongly associated with anxiety or depression were a prior diagnosis of anxiety or depression [Adjusted Odds Ratio (aOR) 2.37, 95% confidence interval (95% CI) 1.66-3.39; p < 0.001], dementia (aOR 1.91, 95% CI 1.24-2.93; p = 0.003), being at home with support (aOR 1.41, 95% CI 1.12-1.69; p = < 0.001), and low socioeconomic advantage compared to high (aOR 1.59, 95% CI 1.21-2.10; p = 0.001). Acute stroke processes of care were not independently associated with anxiety or depression. Conclusions Identification of those with prior mental health problems for early intervention and support may help reduce the prevalence of post-stroke anxiety or depression.

2025

Aims: As we begin to leverage Big Data in health care settings and particularly in assessing patient-reported outcomes, we need novel analytics to address unique challenges. Latent Dirichlet Allocation (LDA) has been previously applied to... more

Aims: As we begin to leverage Big Data in health care settings and particularly in assessing patient-reported outcomes, we need novel analytics to address unique challenges. Latent Dirichlet Allocation (LDA) has been previously applied to extract themes from tetrabytes of free-text social media postings. In this study, LDA was applied to interview data collected as part of a prospective, longitudinal study of QOL in patients undergoing radical cystectomy and urinary diversion for bladder cancer (ClinicalTrials.gov NCT00745355). Methods: Patients' personal goals were collected using Ideographic QOL Interview probes: ''For you to have the most satisfying life possible, what are the main things you want to accomplish?'' ''to solve?'' ''to prevent?'' ''keep the same?'' ''let go?'' and ''accept as they are now?''. Interviews were transcribed (N = 237; age 65 years, 19% female, and 63% college education) into free-text goal statements, e.g., ''survive the surgery; have a manageable recovery process; return to a normal life after recovery.'' (3093 statements altogether) LDA using Python scikit-learn Machine Learning tools extracted themes from baseline and 6 months post-surgery data separately to examine changes. Results: LDA summarized goal statements into clusters of words with common latent themes. Baseline themes included: ''surgery operation life normal make healthy'', ''cancer work pain live free living'', and ''time family health friends traveling good''. At 6 months post-surgery, new themes emerged: ''want continence issues good functioning money'' and ''cancer free family life know leakage''. Goals common in both time points changed in priority, shown in Fig. , that ''time family health friends traveling good'' became more salient post-surgery, while ''surgery operation life normal make healthy'' became less salient. Generally, patients' baseline goals were primarily on surgery success, recovery and a sense of normalcy thereafter. At post-surgery, however, priorities shifted to self-care and appreciation of life and family. Similar patterns of changes were found in other goal domains. Conclusions: Free-text data offer patients an important opportunity to voice their unique experiences toward improving outcomes. Thanks to novel Big Data analytics such as LDA, personal goals can be easily summarized in real time without the need for conventional fixed-length measures and qualitative data coding. (2) Visualization of patient-reported experience measures: opportunities for quality and health system improvements

2025, Quality of life research

Objective Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures... more

Objective Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. Methods Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UKbased patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). Conclusions The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

2025, Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

To investigate the feasibility of deriving experience-based visual analogue scale (VAS) values for EQ-5D-3L health states using national general population health survey data in China. The EQ-5D-3L was included in the National Health... more

To investigate the feasibility of deriving experience-based visual analogue scale (VAS) values for EQ-5D-3L health states using national general population health survey data in China. The EQ-5D-3L was included in the National Health Services Survey (n = 120,709, aged 15-103 years) to measure health-related quality of life. The respondents reported their current health status on a VAS and completed the EQ-5D-3L questionnaire, enabling modelling of the association between the experience-based VAS values and self-reported problems on EQ-5D dimensions and severity levels. VAS values were generally negatively associated with problems reported on the EQ-5D dimensions, and the anxiety/depression dimension had the greatest impact on VAS values. A previously obtained value for dead allowed the values for all 243 EQ-5D-3L health states to be transformed to the 0-1 scale (0 = dead, 1 = full health). This study presents the feasibility of deriving an experience-based VAS values for EQ-5D-3L he...

2025, Quality of Life Research

Background Despite the growing importance of the EQ-5D descriptive system as a basis for the valuation of QALYs in cost-utility analysis, for most countries, there are no EQ-5D value sets. Researchers and policy makers wishing to use the... more

Background Despite the growing importance of the EQ-5D descriptive system as a basis for the valuation of QALYs in cost-utility analysis, for most countries, there are no EQ-5D value sets. Researchers and policy makers wishing to use the EQ-5D descriptive system in a country for which there is no value set are advised to use one from a nearby or 'similar' population. Factors other than geographic proximity can affect the relative values of EQ-5D states. Objective This study explores the links between national culture and EQ-5D value sets. Method Rank correlation analysis is used to explore relationships between the relative values of a set of EQ-5D states and dimensions of national culture. The latter are taken from Hofstede's framework which operationalizes national culture in five dimensions. Results For the data currently available (countries for which EQ-5D value sets and scores on dimensions of culture both exist), moderate and strong correlations were found between the culture dimension of power distance and individualism and the EQ-5D dimensions of pain/discomfort and anxiety/depression. Moderate correlations were also observed between the cultural dimension of masculinity and the EQ-5D dimensions of self care, usual activities and pain/discomfort. Uncertainty avoidance correlates with the EQ-5D dimension of anxiety/depression. Discussion The correlation patterns observed are generally consistent with a priori expectations based on the nature of the dimensions of culture and the EQ-5D model. This analysis demonstrates the potential of national culture in providing insight into the drivers of the relative values of EQ-5D dimensions for different countries and in informing decisions about which EQ-5D value sets to use in situations where one does not exist.

2025, Quality of Life Research

In the clinical and economic evaluation of health care, the value of benefit gained should be determhred from a public perspective. The objective of this study was to establish relative valuations attached to different health states to... more

In the clinical and economic evaluation of health care, the value of benefit gained should be determhred from a public perspective. The objective of this study was to establish relative valuations attached to different health states to form the basis for a 'social tariff' for use in quantifying patient benefit from health care. Three thousand three hundred and ninety-five interviews were conducted with a representative sample of the adult British population. Using the EuroQol health state classification and a visual analogue scale (VAS), each respondent valued 15 health states producing, in total, direct valuations for 45 states. Two hundred and twenty-one re-interviews were conducted approximately 10 weeks later. A near complete, and logically consistent, VAS data set was generated with good test-retest reliability (mean ICC = 0.78). Both sociai class and education had a significant effect, where higher median valuations were given by respondents in social classes Ill-V and by those with intermediate or no educational qualifications. These effects were particularly noticeable for more severe states. The use of such valuations in a social tariff raises important issues regarding the use of the VAS method itself to elicit valuations for hypothetical health states, the production of separate tariffs according to social class and/or education and the appropriate measure of central tendency.

2025, Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

To determine the relationship of Apgar scores, gestational age and neonatal risk mortality scores to health-related quality of life (HRQoL) for infants at the age of 8 months treated after birth in neonatal intensive care unit (NICU). All... more

To determine the relationship of Apgar scores, gestational age and neonatal risk mortality scores to health-related quality of life (HRQoL) for infants at the age of 8 months treated after birth in neonatal intensive care unit (NICU). All surviving infants treated in two-third level NICUs in Rijeka, Croatia (from August 2013 to August 2014) were included in this prospective, cross-sectional study. For all neonates, the Score for Neonatal Acute Physiology (SNAP), SNAP with Perinatal Extension (SNAP-PE) and their simplified modifications (SNAP II and SNAP-PE II) were calculated. At the corrected age of 8 months, the Pediatric Quality of Life Questionnaire (PedsQL)-infant scale-was completed by parents of surviving infants. Multiple regression analysis was performed in order to assess the value of neonatal risk mortality scores, Apgar scores and gestational age as possible predictors of HRQoL, measured by questionnaire score. A strong correlation has been found between SNAP and 5-min A...

2025

Objectives: To determine whether the addition of deep or superficial heating to stretching produces better clinical outcomes than stretching alone in the management of frozen shoulder. Design: A single-blinded, randomized controlled... more

Objectives: To determine whether the addition of deep or superficial heating to stretching produces better clinical outcomes than stretching alone in the management of frozen shoulder. Design: A single-blinded, randomized controlled study. Subjects: Thirty subjects suffering from the stiffness phase of frozen shoulder. Methods: Subjects were randomly allocated to receive: (i) deep heating plus stretching; (ii) superficial heating plus stretching; or (iii) stretching alone. Both heating groups received the respective treatments 3 times per week for 4 weeks. All groups received a standard set of shoulder stretching exercises. The American Shoulder and Elbow Surgeons assessment form was recorded at the baseline, sessions 6 and 12, and at the 4-week follow-up session. Results: A significant improvement was seen in all groups in all outcome measures except for that of shoulder flexion range. The improvement in the shoulder score index and in the range of motion was significantly better in the deep heating group than in the superficial heating group. The addition of deep heating to stretching exercises produced a greater improvement in pain relief, and resulted in better performance in the activities of daily living and in range of motion than did superficial heating.

2025

Creating an excellent management team is one of the vital components within any organization aiming to success or to maintain the same. The authors conducted a research using two questionnaires: the manager success assessment (MSA)... more

Creating an excellent management team is one of the vital components within any organization aiming to success or to maintain the same. The authors conducted a research using two questionnaires: the manager success assessment (MSA) questionnaire and Hay’s questionnaire for determining the working styles. The results provided by this survey within a company are analyzed and summarized, and are compared to the 13 manager success criteria previously set. Furthermore, the results are analyzed with regard to the working styles’ results and the integral model which points to the corresponding Adizes’ Roles, and several improvements possibilities related to candidates’ skills are proposed.

2025, Quality of Life (Banja Luka) - APEIRON

Long-term and short-term effi ciency and effectiveness of a working team depend on an optimal Roles distribution within it. Therefore, having a model which enables such corresponding distribution is of a high interest to any quality... more

Long-term and short-term effi ciency and effectiveness of a working team depend on an optimal Roles distribution within it. Therefore, having a model which enables such corresponding distribution is of a high interest to any quality manager. Two main concepts, the Roles concept of Adizes and Working styles concept of Julie Hay, are involved to create an integral model with an original approach to the Roles distribution in any working team. The greatest advantage of this model is that it is predictive instead of experiential: it makes it possible to make a corresponding Roles distribution in advance within the team, without previously monitoring the activities of the potential team members. A discussion to the relation between the possible outcomes and the level of prediction is given. Furthermore, an application of the integral model in an organization is presented. The application is rather simple and is very informative of the working behavior style of those to whom it is applied. The results and outcome from the model are compared to the results from Adizes questionnaire. Limitations to the application are pointed out. Finally, a managing team in the organization is proposed.

2025, Quality of Life Research

The objectives of this study were to develop a Bangla version of the World Health Organization Quality of Life questionnaire (WHOQOL-BREF), and assess its reliability and validity on an adolescent population in Bangladesh. In total, 187... more

The objectives of this study were to develop a Bangla version of the World Health Organization Quality of Life questionnaire (WHOQOL-BREF), and assess its reliability and validity on an adolescent population in Bangladesh. In total, 187 boys (mean age 14.6 years ± SD 2.1) and 137 girls (15.2 ± SD 2.0) from residential areas, and 157 boys (13.8 ± SD 2.1) and 121 girls (13.4 ± SD 2.1) from slums in Dhaka were interviewed using a questionnaire, which included a Bangla translation of the WHOQOL-BREF. Thirty-eight randomly selected adolescents from the original interviewed group were re-administered the same questionnaire 1 week later. On the whole, the Bangla version of WHOQOL-BREF showed good internal consistency and test-retest reliability. In comparisons between residential and slum areas, discriminant validities were observed in the total and environmental domain of both genders and in the social relationship domain of males. Furthermore, discriminant validities of physical and psychological domains were observed in gender comparisons. These results suggest that the Bangla version of WHOQOL-BREF is valid and reliable in assessing the quality of life of adolescents in Bangladesh.

2025, Quality of Life Research

Purpose To assess the acceptability, validity and interrater agreement of self-and family carer proxy ratings of the EQ-5D as a generic health-related quality of life (HRQOL) measure, in people with mild to moderate dementia (PwD) living... more

Purpose To assess the acceptability, validity and interrater agreement of self-and family carer proxy ratings of the EQ-5D as a generic health-related quality of life (HRQOL) measure, in people with mild to moderate dementia (PwD) living in the community. A secondary aim was to identify the most important factors influencing selfand family carer proxy ratings of HRQOL, distinguishing between spouse and adult child caregiver ratings. Methods Cross-sectional study of 488 dyads using the EQ-5D. Inter-rater agreement was examined using weighted kappa scores, and validity by investigating the association of self-and family carer ratings with clinical variables. Factors affecting HRQOL ratings were analysed using multivariate regression. The response rate of the EQ-5D was satisfactory; however, agreement between self-and family carer ratings was poor. The most important predictors of PwD and carer ratings of the PwD's HRQOL were family carer ratings of activities of daily living and mood. Anxiety experienced by the PwD was a significant predictor of self-rated HRQOL, whereas depressive symptoms independently predicted family carer ratings. The type of the caregiving relationship influenced carer ratings of HRQOL, whereby sons and daughters rated HRQOL lower for the PwD compared with spousal caregivers. Conclusions People with mild to moderate dementia are able to rate their own HRQOL through a brief generic instrument; however, self-ratings consistently differ from family carer ratings, which should be acknowledged in cost-effectiveness analyses. Spouse caregivers rate HRQOL for the PwD more positively compared to adult children.

2025, Quality of Life Research

Objective: Eating disorders (EDs) can have a serious impact on various life domains and may lead to physical, mental and social impairment and consequently to poor quality of life (QOL). This study compared the QOL of ED patients and... more

Objective: Eating disorders (EDs) can have a serious impact on various life domains and may lead to physical, mental and social impairment and consequently to poor quality of life (QOL). This study compared the QOL of ED patients and former ED patients in a large community based sample to the QOL of a normal reference group and to the QOL of patients with mood disorders. Differences between ED diagnostic groups were examined. The study investigated what factors contribute to QOL. Methods: A generic health-related quality of life questionnaire, the Short Form-36 (SF-36), and the Eating Disorder Examination-Questionnaire were administered to 156 ED patients -44 anorexia nervosa patients, 43 bulimia nervosa patients, 69 eating disorder not otherwise specified patients -and 148 former ED patients. Results: ED patients reported significantly poorer QOL than a normal reference group. No differences were found between the diagnostic groups. Former ED patients still had poorer QOL than a normal reference group. ED patients reported significantly poorer QOL than patients with mood disorders. Self esteem contributed most to QOL. Conclusion: EDs have a severe impact on many domains of QOL. Therefore QOL needs to be addressed in effectiveness research and clinical practice.

2025, Quality of Life Research

Purpose The comorbidity of any substance use disorder and another mental disorder is defined as dual diagnosis. Dual diagnosis is very common and clinical and therapeutic consequences have been described. This cross-sectional study aimed... more

Purpose The comorbidity of any substance use disorder and another mental disorder is defined as dual diagnosis. Dual diagnosis is very common and clinical and therapeutic consequences have been described. This cross-sectional study aimed to analyse health-related quality of life (HRQoL) according to clinical characteristics and psychiatric comorbidities in patients with substance dependence. Methods A total of 1276 substance-dependent patients seeking treatment were recruited. HRQoL was evaluated by the Short-Form 36 (SF-36) questionnaire. The SCID-I, SCID-II and Conners' adult ADHD diagnostic interview were used to evaluate dual diagnosis. A visual analogue scale was used to measure craving. Bivariate and multivariate analyses were performed, and correction for multiple tests was conducted. Results Substance-dependent patients had impaired quality of life, especially in the mental component. SF-36 physical and mental component scores were 47.7 ± 10.9 and 36.1 ± 14.1, respectively. Furthermore, 65% of the patients had dual diagnosis, 51% had an Axis I DSM-IV-TR mental disorder and 35% had some personality disorder. Impaired physical quality of life was independently associated with medical condition, age, being female, depressive disorder and anxiety disorder. Depression disorder, any personality disorder, active consumption last month, Attention deficit hyperactivity disorder, anxiety disorder, suicide attempt were independently associated with worse mental quality of life. Conclusion These findings emphasize the significance of dual diagnosis in the impairment of HRQoL in substancedependent patients, particularly with regard to mental component. In addicted patients with low scores on SF-36, psychiatric comorbidity should be evaluated and treated in an integrated approach.

2025, Quality of Life Research

Purpose This study analysed data from a national survey of people living in Australian Residential Aged Care Facilities (RACFs) reporting on what is the best thing about where they live and suggestions for improvement. Data from prior to... more

Purpose This study analysed data from a national survey of people living in Australian Residential Aged Care Facilities (RACFs) reporting on what is the best thing about where they live and suggestions for improvement. Data from prior to the Covid-19 pandemic were compared with data during the Covid-19 pandemic. Methods Qualitative data from the Happy Life Index Survey were analysed using summative content analysis to code the responses in the data sets and then organise them into categories. Once categorised, the pre-Covid-19 and mid-Covid-19 data sets were compared using descriptive statistics. Results A total of 4745 residents, from over 100 RACFs, provided 8512 open-text responses to at least one of the two survey questions. Pre-Covid-19 responses were compared with mid-Covid-19 responses and those trending towards relevance (5-10% change) were identified. There were both positive and negative relevant percent changes for staff number, food (general comments), and friendliness. A trending positive percentage change was observed for staff quality and the internal environment. There was a trending negative relevant percentage change for lifestyle activities, staff generally, level of contentedness, the general environment, general choice, and general views about the service. Conclusion People living in RACFs notice the changes in staffing levels and visitors during restrictions imposed during infectious outbreaks. During these times, they appreciate the quality of the staff attending to their needs and the quality of their food. Further exploration is needed of the value of lifestyle activities and strategies to promote feelings of contentedness and general wellbeing during times of restriction.

2025, Quality of Life Research

Purpose This study analysed data from a national survey of people living in Australian Residential Aged Care Facilities (RACFs) reporting on what is the best thing about where they live and suggestions for improvement. Data from prior to... more

Purpose This study analysed data from a national survey of people living in Australian Residential Aged Care Facilities (RACFs) reporting on what is the best thing about where they live and suggestions for improvement. Data from prior to the Covid-19 pandemic were compared with data during the Covid-19 pandemic. Methods Qualitative data from the Happy Life Index Survey were analysed using summative content analysis to code the responses in the data sets and then organise them into categories. Once categorised, the pre-Covid-19 and mid-Covid-19 data sets were compared using descriptive statistics. Results A total of 4745 residents, from over 100 RACFs, provided 8512 open-text responses to at least one of the two survey questions. Pre-Covid-19 responses were compared with mid-Covid-19 responses and those trending towards relevance (5–10% change) were identified. There were both positive and negative relevant percent changes for staff number, food (general comments), and friendliness. ...

2025, Quality of Life Research

Purpose The patient activation measure short form (PAM-13) assesses patients' self-reported health management skills, knowledge, confidence, and motivation. We used item response theory to evaluate the psychometric properties of the... more

Purpose The patient activation measure short form (PAM-13) assesses patients' self-reported health management skills, knowledge, confidence, and motivation. We used item response theory to evaluate the psychometric properties of the PAM-13 utilized in rural settings. Methods A Rasch partial credit model analysis was conducted on the PAM-13 instrument using a sample of 812 rural patients recruited by providers and our research staff. Specially, we examined dimensionality, item fit, and quality of measures, category response curves, and item differential functioning. Convergent and divergent validities were also examined. Findings The PAM-13 instrument has excellent convergent and divergent validities. It is fairly unidimensional, and all items fit the Rasch model well. It has relatively high person and item reliability indices. Majority of the items were free of item differential functioning. There were, however, some issues with ceiling effects. Additionally, there was a lack of responses for category one across all items. Conclusions Patient activation measure short form (PAM-13) performs well in some areas, but not all. In general, more items need to be added to cover the upper end of the trait. The four response categories of PAM-13 should be collapsed into three.

2025, Quality of Life Research

Purpose We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument.... more

Purpose We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument. Methods We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and fieldtested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/ discriminant validity using a range of validation measures. Results C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value.

2025, Health and Quality of Life Outcomes

Monitoring of patients' physical and psychological problems during and after cancer treatment is essential in modern oncology practice. Traditional clinical methods can be supplemented by Patient-Reported Outcomes Measures (PROMs)... more

Monitoring of patients' physical and psychological problems during and after cancer treatment is essential in modern oncology practice. Traditional clinical methods can be supplemented by Patient-Reported Outcomes Measures (PROMs) measures. The potential role of PROMs is recognised and endorsed by national and international practice guidelines. The introduction of formal measurement of PROMs in clinical practice is a complex health care innovation requiring careful planning, design and successful implementation of a number of essential components, such as choosing the patient questionnaire(s), a convenient affordable electronic method for reporting and display in hospital records and engaging clinicians to use and act on the reports. There is mounting research evidence that using PROMs in individual patient care in oncology is beneficial to patients, but this approach has not found a place in routine clinical practice. A brief overview of this evidence will be provided. Following this, the presentation will focus on examples of incorporating PROMs and eHealth interventions into routine patient care during and after cancer treatment, drawing on 20 years' experience in Leeds of using electronic systems for capturing patient reported data in oncology settings. Examples will be given of: 1) Monitoring toxicity during systemic cancer treatment using online PROMs integrated with Electronic Patient Records (randomized trial part of NIHR eRAPID programme); 2) Service development project -Remote follow-up of testicular cancer patients using online PROMs plus community-based investigations. Examples of other online PROMs systems will be presented. The values and challenges of PROMs integration in routine oncology practice will be discussed.

2025, Health and Quality of Life Outcomes

2025, Quality of Life Research

Purpose This study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input. Methods We... more

Purpose This study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input. Methods We made minor wording modifications to the Patient FACT-G to enable caregivers to report how the illness affected their overall quality of life (QOL) and well-being on four subscales (physical, social, emotional, functional). We tested the acceptability, precision, factor structure, reliability and validity of the Caregiver FACT-G among partners of prostate cancer patients (N = 263) and caregivers (spouses, siblings, adult children) of patients with advanced cancer (breast, lung, colorectal, prostate) (N = 484) using data from two Randomized Clinical Trials (RCTs). Results With a factor structure similar to the Patient FACT-G, Caregiver FACT-G was acceptable and precise in measuring caregiver QOL, with high inter-factor correlations and internal consistency reliability (Cronbach's alphas 0.81-0.91). The Caregiver FACT-G had strong convergent validity demonstrated by significant positive correlations with caregiver selfefficacy (0.25-0.63), dyadic communication (0.18-0.51), and social support (0.18-0.54) in both samples. It also had strong discriminant validity evidenced by significant inverse correlations with negative appraisal of caregiving (-0.37 to -0.69), uncertainty (-0.28 to -0.53), hopelessness (-0.25 to -0.60), and avoidant coping (-0.26 to -0.58) in both samples. Caregivers' baseline FACT-G scores were significantly associated with their physical (0.23) and mental well-being (0.54; 4-month follow-up) and their depression (-0.69; 3-month follow-up), indicating strong predictive validity. Conclusion This is the first study evaluating the psychometric properties of the Caregiver FACT-G. More psychometric testing is warranted, especially among caregivers of diverse sociocultural backgrounds.

2025, Quality of Life Research

Purpose-This study aimed at examining the relationship between quality of life (QOL) in prostate cancer (PCa) patients and partners and how baseline demographics, cancer-related factors, and time-varying psychosocial and symptom... more

Purpose-This study aimed at examining the relationship between quality of life (QOL) in prostate cancer (PCa) patients and partners and how baseline demographics, cancer-related factors, and time-varying psychosocial and symptom covariates affect their QOL over time. Methods-Guided by a modified Stress-Coping Model, this study used multilevel modeling to analyze longitudinal data from a randomized clinical trial that tested a family-based intervention to improve QOL in couples managing PCa. Patients and partners from the usual-care control group (N = 134 dyads) independently completed the measurements at baseline, and at 4-, 8-, and 12month follow-ups. Results-Correlations of QOL between patients and partners over time were small to moderate. Patients' lower education level, partners' older age, higher family income, and localized cancer at baseline were associated with better QOL in couples. Over time, couples' QOL improved as their social support and cancer-related dyadic communication increased and as couples' uncertainty, general symptoms, and patients' prostate cancer-related sexual and hormonal symptoms decreased.

2025, Quality of Life Research

Purpose To identify psychoeducational interventions that target parents of children with congenital abnormalities (CA) and evaluate their impact on quality of life (QoL). Methods The search was conducted in six electronic databases,... more

Purpose To identify psychoeducational interventions that target parents of children with congenital abnormalities (CA) and evaluate their impact on quality of life (QoL). Methods The search was conducted in six electronic databases, complemented by references of the studies found, studies of evidence synthesis, a manual search of relevant scientific meetings’ abstracts and contact with experts. We included primary studies on parents of children with CA that studied psychoeducational interventions versus standard care. We assessed the risk of bias using Cochrane Collaboration’s tool. Results We included six studies focusing on congenital heart defects (CHD). They described four different psychoeducational strategies. In four studies, statistically significant differences were found. For clinical practice, we considered three interventions as more feasible: the Educational program for mothers, with a group format of four sessions weekly; CHIP-Family intervention, which includes a pare...

2025, Quality of Life Research

Purpose To develop and verify a model of participation post stroke, as a domain of health related quality of life. Methods An explanatory sequential mixed-methods design was selected. The quantitative phase developed a participation model... more

Purpose To develop and verify a model of participation post stroke, as a domain of health related quality of life. Methods An explanatory sequential mixed-methods design was selected. The quantitative phase developed a participation model with data from an observational study of 453 participants at 12 months post-stroke, using structural equation modeling. The qualitative phase followed to verify the model from the perspective of individuals post-stroke. Data was collected from two groups of eight stroke survivors involved in a multicentre trial about participation in the community. Individuals took photographs to describe participation; discussion of photographs was conducted over the course of three focus groups, and analysis identified emergent categories related to the model. The 12-month post stroke participation model consisted of latent variables: accomplishment, restricted roles, and health efficacy. The model fit was reasonable: normed v 2 = 2.95, RMSEA = 0.066(0.052; 0.079). The qualitative data verified the model; participants initiated photo-taking and discussion of all aspects of the model. Concepts of social support, environment, and cognitive difficulties were also discussed in relation to participation. Conclusions The participation model was developed and verified. Additions to future models are suggested. Theoretical, clinical, and research implications are discussed.

2025

ABSTRACT. Objective. To compare the psychometric functioning of multidimensional disease-specific, multiitem generic, and single-item measures of fatigue in patients with rheumatoid arthritis (RA). Methods. Confirmatory factor analysis... more

ABSTRACT. Objective. To compare the psychometric functioning of multidimensional disease-specific, multiitem generic, and single-item measures of fatigue in patients with rheumatoid arthritis (RA). Methods. Confirmatory factor analysis (CFA) and longitudinal item response theory (IRT) modeling were used to evaluate the measurement structure and local reliability of the Bristol RA Fatigue Multi-Dimensional Questionnaire (BRAF-MDQ), the Medical Outcomes Study Short Form-36 (SF-36) vitality scale, and the BRAF Numerical Rating Scales (BRAF-NRS) in a sample of 588 patients with RA. Results. A 1-factor CFA model yielded a similar fit to a 5-factor model with subscale-specific dimensions, and the items from the different instruments adequately fit the IRT model, suggesting essential unidimensionality in measurement. The SF-36 vitality scale outperformed the BRAF-MDQ at lower levels of fatigue, but was less precise at moderate to higher levels of fatigue. At these levels of fatigue, the li...

2025, Quality of Life Research

possible to provide an overview about statistically supported causes and consequences of fatigue in RA. Therefore it is of special importance to measure fatigue adequately. The precise measurement of fatigue is essential for the... more

possible to provide an overview about statistically supported causes and consequences of fatigue in RA. Therefore it is of special importance to measure fatigue adequately. The precise measurement of fatigue is essential for the evaluation of potential treatment effects. 37 It is also important for getting insight into causes and consequences of fatigue. Moreover, adequate measurement of fatigue is needed for diagnosis and screening purposes and facilitates the communication about fatigue between patient and professional. Several uni-and multidimensional scales were developed to assess fatigue in clinical practice and research. Whereas unidimensional questionnaires are usually brief and provide a single score, multidimensional scales comprise a larger number of items and provide more detailed information that can give insight into different profiles and underlying mechanisms of fatigue. 17 Fatigue measures with single item scales, such as visual analogue scales (VAS) or numerical rating scales (NRS), might have some value, 38 but do not correspond with the multidimensional character of fatigue as reported by patients. 10-13 In line with patients' experiences measurement of fatigue should be multidimensional, although it is not yet clear which and how many dimensions should be assessed. Of the four multi-item fatigue questionnaires with reasonable evidence for validity in RA, 14 only the Multidimensional Assessment of Fatigue scale (MAF) 39 comprises several dimensions: severity, distress, timing and interference. For the Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACIT-F), 40 separate scores for experience and impact can be calculated although it is usually applied unidimensionally. Also the Short Form 36 subscale vitality (SF-36) 41 and the Profile of Mood States subscale fatigue/inertia (POMS) 42 only have one dimension. Nicklin et al. 43 demonstrated that none of these four scales covers patient-reported concepts of fatigue comprehensively. Patients described fatigue in terms of frequency, duration, energy, sleep, cognition, coping, emotion, impact, social life, planning, relationships, and quality of life. 11,43 Moreover, none of these four instruments met all criteria for validity in patients with RA, so still further validation in this patient group is needed. 14 The main problem concerned content validity; a limitation of these traditional instruments is that the perspective of RA patients was not included during their development. In chapter 8, we describe how the items from traditional fatigue questionnaires are evaluated by patients, rheumatologists and nurses. Recently, the Bristol RA Fatigue Multi-Dimensional Questionnaire (BRAF-MDQ) 45 was developed from the patient's perspective and evaluated in a British RA population. With its four dimensions (physical, living, cognition, emotion), a score for each can be

2025, Quality of Life Research

Purpose To elicit perceptions of oral health in children and adolescents as an initial step in the development of oral health item banks for the Patient-Reported Oral Health Outcomes Measurement Information System project. Methods We... more

Purpose To elicit perceptions of oral health in children and adolescents as an initial step in the development of oral health item banks for the Patient-Reported Oral Health Outcomes Measurement Information System project. Methods We conducted focus groups with ethnically, socioeconomically, and geographically diverse youth (8-12, 13-17 years) to identify perceptions of oral health status. We performed content analysis, including a thematic and narrative analysis, to identify important themes. Results We identified three unique themes that the youth associated with their oral health status: (1) understanding the value of maintaining good oral health over the life course, with respect to longevity and quality of life in the adult years; (2) positive association between maintaining good oral health and interpersonal relationships at school, and dating, for older youth; and (3) knowledge of the benefits of orthodontic treatment to appearance and positive self-image, while holding a strong view as to the discomfort associated with braces. Conclusions The results provide valuable information about core domains for the oral health item banks to be developed and generated content for new items to be developed and evaluated with cognitive interviews and in a field test.

2025, Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

Children and adolescents are vulnerable to dental problems and oral diseases. This paper presents the development of two multi-item self-report scales for use in assessing oral health status of children and adolescents. Following the... more

Children and adolescents are vulnerable to dental problems and oral diseases. This paper presents the development of two multi-item self-report scales for use in assessing oral health status of children and adolescents. Following the Patient-Reported Outcome Measurement Information System framework, survey questions were designed using a newly developed conceptual model. These items were administered to 334 children and adolescents (8-17 years) along with concurrent dental exams. Exploratory and confirmatory factor analyses were conducted and the item response theory graded response model was used to estimate item parameters and oral health status scores and to identify short-form items. The items were selected by high level of information and wide coverage of different domains to assess Child Oral Health Status Index (COHSI) and treatment referral recommendations (RR). The long form consists of 28 items. The short-form includes 12 items (8 for COHSI and 7 for RR with 3 common items...

2025, Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

To elicit perceptions of oral health in children and adolescents as an initial step in the development of oral health item banks for the Patient-Reported Oral Health Outcomes Measurement Information System project. We conducted focus... more

To elicit perceptions of oral health in children and adolescents as an initial step in the development of oral health item banks for the Patient-Reported Oral Health Outcomes Measurement Information System project. We conducted focus groups with ethnically, socioeconomically, and geographically diverse youth (8-12, 13-17 years) to identify perceptions of oral health status. We performed content analysis, including a thematic and narrative analysis, to identify important themes. We identified three unique themes that the youth associated with their oral health status: (1) understanding the value of maintaining good oral health over the life course, with respect to longevity and quality of life in the adult years; (2) positive association between maintaining good oral health and interpersonal relationships at school, and dating, for older youth; and (3) knowledge of the benefits of orthodontic treatment to appearance and positive self-image, while holding a strong view as to the disco...

2025, Quality of Life Research

Purpose. Health status measures are widely recognized as providing substantial information on heart failure (HF) patients conditions and prognosis, but they are not included in the data routinely collected. The aim of the study was to... more

Purpose. Health status measures are widely recognized as providing substantial information on heart failure (HF) patients conditions and prognosis, but they are not included in the data routinely collected. The aim of the study was to assess in a prospective cohort of HF patients, the independent prognostic value of health status measured with the Kansas City Cardiomyopathy Questionnaire (KCCQ) on mortality and hospital admissions over a period of 3.3 years. Method. Eighty-three Italian cardiology centres included all their patients randomised in the GISSI-HF trial in an observational outcome study where the KCCQ was administered at baseline by nursing personnel. A total of 1465 outpatients with chronic HF, NYHA class II-III, with coronary and non -coronary etiology were included and followed-up for mortality and admissions. Results. The effect of baseline perception of health status on mortality and all causes hospitalizations was explored with Cox proportional hazard regression models progressively adjusted for several variables. When stratified according to pre-defined criteria, lower values of KCCQ scores (<25) as compared with best scores (>75) were predictive of mortality (1.85; IC95% 1.16-2.95) but not of hospital admissions risk (p for trend significant for mortality with decreasing scores). Lower KCCQ scores discriminated the risk also within the NYHA II and III classes. Conclusions. KCCQ scores provide a clinically important and statistically robust independent prognostic information on hard outcome end-points of HF patients on the top of the clinical scores. It is suggested that KCCQ should become a routine component of the patients care and of prognostic profiles.

2025, Health and Quality of Life Outcomes

Background: The responsiveness of oral health-related quality of life (OHRQoL) instruments has become relevant, given the increasing tendency to use OHRQoL measures as outcomes in clinical trials and evaluations studies. The purpose of... more

Background: The responsiveness of oral health-related quality of life (OHRQoL) instruments has become relevant, given the increasing tendency to use OHRQoL measures as outcomes in clinical trials and evaluations studies. The purpose of this study was to assess the responsiveness of the Brazilian Scale of Oral Health Outcomes for 5-year-old children (SOHO-5) to dental treatment. Methods: One hundred and fifty-four children and their parents completed the child self-and parental' reports of the SOHO-5 prior to treatment and 7 to 14 days after the completion of treatment. The post-treatment questionnaire also included a global transition judgment that assessed subject's perceptions of change in their oral health following treatment. Change scores were calculated by subtracting post-treatment SOHO-5 scores from pretreatment scores. Longitudinal construct validity was assessed by using one-way analysis of variance to examine the association between change scores and the global transition judgments. Measures of responsiveness included standardized effect sizes (ES) and standardized response mean (SRM). Results: The improvement of children's oral health after treatment are reflected in mean pre-and post-treatment SOHO-5 scores that declined from 2.67 to 0.61 (p < 0.001) for the child-self reports, and 4.04 to 0.71 (p < 0.001) for the parental reports. Mean change scores showed a gradient in the expected direction across categories of the global transition judgment, and there were significant differences in the pre-and post-treatment scores of those who reported improving a little (p < 0.05) and those who reported improving a lot (p < 0.001). For both versions, the ES and SRM based on change scores mean for total scores and for categories of global transitions judgments were moderate to large. The Brazilian SOHO-5 is responsive to change and can be used as an outcome indicator in future clinical trials. Both the parental and the child versions presented satisfactory results.

2025, Quality of Life Research

Objective-Our objective was to examine the effects of exercise training (EXS) on quality of life (QoL) in highly active antiretroviral therapy (HAART)-treated HIV-positive (HIV+) subjects with body fat redistribution (BFR) in Rwanda.... more

Objective-Our objective was to examine the effects of exercise training (EXS) on quality of life (QoL) in highly active antiretroviral therapy (HAART)-treated HIV-positive (HIV+) subjects with body fat redistribution (BFR) in Rwanda. Methods-The effects of a randomised controlled trial of EXS on QoL were measured using World Health Organisation Quality of Life (WHOQOL)-BREF in HIV+ subjects with BFR randomised to EXS (n = 50; BFR + EXS) or no exercise training (n = 50; BFR + noEXS). Results-At 6 months, scores on the psychological [1.3 (0.3) vs. 0.5 (0.1); P < 0.0001], independence [0.6 (0.1) vs. 0.0 (0.0); P < 0.0001], social relationships [0.6 (0.2) vs. 0.0 (0.0); P < 0.0001] and HIV HAART-specific QoL domains [1.4 (0.2) vs. -0.1 (0.2); P < 0.0001] improved more in BFR + EXS than BFR + noEXS group, respectively. Self-esteem [1.3 (0.8) vs. 0.1 (0.6); P < 0.001], body image [1.5 (0.6) vs. 0.0 (0.5); P < 0.001] and emotional stress [1.6 (0.7) vs. 0.2 (0.5); P < 0.001] improved more in the BFR + EXS group than BFR + noEXS group, respectively. Psychological [1.5 (0.2) vs. 1.1 (0.3); P < 0.0001], social relationship [0.8 (0.2) vs. 0.4 (0.2); P < 0.0001], and HIV HAART-specific well-being [1.8 (0.2) vs. 1.0 (0.0); P < 0.0001] improved more in BFR + EXS female than male subjects. training improved several components of QoL in HAART-treated HIV+ African subjects with BFR. Exercise training is an inexpensive and efficacious strategy for

2025, Quality of Life Research

Background Evidence on the adverse effects of work stress on quality of life (QoL) is largely derived from general populations, while respective information is lacking for people with disabilities. We investigated associations between... more

Background Evidence on the adverse effects of work stress on quality of life (QoL) is largely derived from general populations, while respective information is lacking for people with disabilities. We investigated associations between work stress and QoL and the potentially moderating role of socioeconomic circumstances in employed persons with spinal cord injury (SCI). Methods Cross-sectional data from 386 employed men and women with SCI (C18 work h/week) from the Netherlands, Switzerland, Denmark, and Norway were analyzed. Work stress was assessed with the 'effort-reward imbalance' (ERI) model and the control component of the 'demand/control' model. QoL was operationalized with five WHOQoL BREF items. Socioeconomic circumstances were measured by years of formal education and perception of financial hardship. We applied ordinal and linear regressions to predict QoL and introduced interaction terms to assess a potential moderation of socioeconomic circumstances. Results Multivariate analyses showed consistent associations between increased ERI and decreased overall QoL (coefficient -1.55, p \ 0.001), domain-specific life satisfaction (health -1.32, p \ 0.001; activities of daily living -1.28, p \ 0.001; relationships -0.84, p = 0.004; living conditions -1.05, p \ 0.001), and the QoL sum score (-2.40, p \ 0.001). Low job control was linked to decreased general QoL (0.13, p = 0.015), satisfaction with relationships (0.15, p = 0.004), and QoL sum score (0.15, p = 0.029). None of the tested interaction terms were significant. Conclusion ERI was consistently related to all indicators of QoL, while associations with job control were less consistent. Our results do not support the notion that unfavorable socioeconomic circumstances moderate the association between work stress and QoL among persons with SCI.