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1.

Purpose

To review data on health-related quality of life (HRQoL) in individuals with childhood trauma, including psychological maltreatment, physical maltreatment, sexual abuse, and neglect.

Methods

The literature search was conducted with pre-defined keywords using the following electronic bibliographic databases: EMBASE, PubMed, MEDLINE, CINAHL, PsyINFO, PSYNDEX, and Cochrane Database of Systematic Reviews. Further databases were searched for relevant dissertations. Study selection and data extraction were completed by two independent reviewers.

Results

The literature search yielded 1568 entries. Nineteen articles met all inclusion criteria and were retained for further analysis. Findings quite consistently showed significant negative associations between child maltreatment and both self- and proxy-rated HRQoL. Effect sizes range from small to large. Number of types of maltreatment and HRQoL were found to be negatively related.

Conclusion

Data on HRQoL for maltreated children are still rare. Studies often investigate adult survivors of child maltreatment. Considering HRQoL in children and adolescents who suffered maltreatment would allow the planning of effective interventions and the evaluation of treatments to improve HRQoL of these children.
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2.

Purpose

Research on the consequences of child maltreatment has primarily focused on behavior and mental health; the children’s overall well-being has not received the same attention. A number of studies have investigated health-related quality of life (HRQoL) among victims of child maltreatment, but there is still a lack of knowledge about predictors of HRQoL in maltreated children and adolescents. This study seeks to bridge the gap by drawing data from the German multi-site study Child Abuse and Neglect Case-Management (CANMANAGE).

Methods

Parents or caregivers of 350 children and adolescents completed a proxy version of the Kidscreen-10-Index, a multidimensional instrument measuring child HRQoL. An additional 249 children age 8 years and older completed a self-report version. Multiple regression analyses were performed to identify potential predictors for both self- and proxy-rated HRQoL.

Results

Comparisons with the reference group revealed a significantly lower mean proxy-rated HRQoL, the self-rated HRQoL of the study sample was not significantly impaired. Predictors of impaired self-reported HRQoL were older age, self-reported posttraumatic stress symptoms (PTSS), and self-reported emotional and behavioral symptoms. Predictors of impaired proxy-reported HRQoL again were older age, self-reported PTSS, and emotional and behavioral symptoms in the child/adolescent, as reported by the caregiver, as well as low socioeconomic status. Multivariate analysis explained 20% and 38% of the variability in self-reported and proxy-rated HRQoL, respectively.

Conclusions

It is important to treat PTSS and emotional and behavioral symptoms in maltreated children, as these two phenomena are strong cross-sectional predictors of a child’s HRQoL. Trauma-focused cognitive behavioral therapies are one possible option to address the needs of such children.
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3.

Purpose

Health-related quality of life (HRQoL) is an important patient-reported outcome in clinical and health research. The EQ-5D-Y assesses child and adolescent HRQoL by five items on mobility, self-care, usual activities, pain/discomfort, and anxiety/depression as well as a visual analogue scale (VAS) on the current health state. This study investigates predictors of self-reported HRQoL according to the EQ-5D-Y in chronically ill children and adolescents using longitudinal data.

Methods

Data from the German Kids-CAT study on children and adolescents with asthma, diabetes, and juvenile arthritis gathered over a period of six months were analyzed (n?=?310; 7–17 years old; 48% female). Self-, parent-, and pediatrician-reported data were collected from June 2013 to October 2014. Generalized linear mixed models and linear mixed models served to examine effects of socio-demographic as well as disease- and health-specific predictors on the items as well as on the VAS of the EQ-5D-Y.

Results

Ceiling effects for the EQ-5D-Y indicated low burden of disease in the analyzed sample. Longitudinal analyses revealed associations between less health complaints and better HRQoL for all investigated HRQoL domains. Further, age- and gender-specific effects, and associations of better disease control, longer duration of the disease and less mental health problems with better HRQoL were found.

Conclusions

Subjective health complaints and mental health problems should be considered in the care of children and adolescents with asthma, diabetes, and juvenile arthritis. Future research should suggest administering the items of the EQ-5D-Y with five instead of three response options, and investigate HRQoL over a longer period.
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4.

Introduction

Multidisciplinary rehabilitation has beneficial effects on health-related quality of life (HRQoL) in patients with chronic rheumatic diseases. However, whether this intervention benefits different age groups in women or men is largely unknown.

Purpose

To investigate HRQoL in patients with chronic rheumatic disease after completion of a 3-week multidisciplinary treatment, with special focus on differences in effect between age and gender groups.

Method

HRQoL was measured with SF-36. Mean scores for all SF-36 domains were compared before and after the 3-week regimen and again at 3-, 6-, and 12-month follow-ups. Multivariable linear regression models using generalized estimating equations to account for repeated measurement were employed. A weighting procedure to account for differential dropouts was applied.

Results

Three hundred fifty-six women and 74 men with chronic rheumatic disease were included. There were short-term improvements in all SF-36 domains irrespective of age or gender. These effects persisted for up to 1 year in the psychological, social, and energy domains for women under 50. We found no lasting effects for men; however, young men showed similar trends.

Conclusion

Inpatient multidisciplinary rehabilitation improves short-term HRQoL in all patients. Younger women maintain these beneficial effects for up to 1 year. Additional intervention should be considered for elderly women and for men in order to sustain rehabilitation effects.
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5.

Purpose

Obesity is a highly stigmatizing condition for both adults and children, and both obesity and stigma experiences are negatively related with health-related quality of life (HRQoL). However, the relations among these constructs have been modeled in different and sometimes inconsistent terms in past research, and have been the object of surprisingly few studies in pediatric populations. The present study addresses this gap by comparing, in a sample of preadolescent children, four competing models (i.e., additive, mediation, moderation, and moderated mediation models) accounting for the role of stigma experiences in the concurrent relation between body weight and HRQoL.

Methods

A community sample of 600 children aged 8–11 years completed the Perception of Teasing Scale to assess weight-based teasing experiences and the PedsQL 4.0 to assess HRQoL. Parent-reported height and weight were used to calculate age- and gender-adjusted zBMI. Log-likelihood test, BIC difference, and Wald test were used for model comparisons.

Results

The mediation model outperformed both additive and moderation models and was found to be equally informative (but more parsimonious) as compared to the moderated mediation account. The same pattern of results was replicated for both global HRQoL and domain-specific quality of life domains (i.e., physical, emotional, social, and scholastic).

Conclusions

The mediation model provided the best fitting and more parsimonious representation of the relations between body weight, stigma experiences, and HRQoL, meaning that an increased likelihood of experiencing weight-based teasing episodes, rather than excess weight per se, is associated with reduced quality of life in middle childhood.
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6.

Purpose

Indigenous conceptions of health have been shown to differ from that of their non-Indigenous counterparts. As a result, there remains uncertainty over the appropriateness and value of using existing health-related quality-of-life (HRQoL) instruments in Indigenous communities. The objective of this review was to identify studies that either measure the HRQoL of an Indigenous population or validated a measure used to elicit the HRQoL in an Indigenous population.

Methods

A systematic review of the published literature was conducted to (1) investigate the extent to which HRQoL instruments are used in Indigenous populations; (2) to identify which instruments have been validated in which populations; and (3) to identify which instruments have been tailored for use with Indigenous populations.

Results

Forty-one studies were included in the review. Only three of the 41 studies utilised Indigenous-specific instruments. The remainder (38 studies) utilised generic population or disease-specific instruments. Four studies found specific HRQoL instruments to be valid in these populations and 32 estimated the HRQoL of an Indigenous population. The limited examples of Indigenous-specific instruments highlighted the potential importance to the HRQoL of these populations of domains that lie outside of traditional measures including social and community domains as well as domains relating to culture, diet and land use on top of more traditional HRQoL domains.

Conclusion

Ensuring that the HRQoL of Indigenous populations is being appropriately measured is vital to prioritising available resources to the most effective interventions. HRQoL instruments present an opportunity to directly elicit and incorporate Indigenous preferences and conceptions of health into these decisions. Further work is required in the field to ensure that this potential is realised.
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7.

Purpose

This study’s aim was to evaluate the health-related quality of life (HRQoL) and associated factors of maltreated children and adolescents.

Methods

This cross-sectional study consisted of individuals between 8 and 17 years of age who were victims of maltreatment. The KIDSCREEN-52 was used to measure their HRQoL. Socioeconomic and demographic data were collected, as well as information about the type of abuse, type of perpetrator, and psychological support adherence. The Kruskal–Wallis test was used to analyze the scores of the KIDSCREEN-52 by the independent variables.

Results

One hundred and thirteen victims answered the questionnaire. Girls and adolescents had a lower overall HRQoL score (p?<?0.05). Children who suffered from sexual abuse had a lowest score on the moods and emotions dimension than children who suffered from physical abuse (p?<?0.05). There was a lowest score on the autonomy dimension among the children who suffered maltreatment by an extrafamilial perpetrator than those who were victimized by an intrafamilial perpetrator (p?<?0.05). A lower score on the psychological well-being was observed among the children who adhered to the psychological support program provided by the service compared to those who terminated the service before completion (p?<?0.05).

Conclusions

Adolescents and girls were associated with lower HRQoL scores. There was no association between the overall HRQoL score and the characteristics of the maltreatment; however, the type of abuse and the victim’s relationship with the perpetrator were only related to some dimensions. These findings may assist maltreatment care providers in planning strategies to reduce the consequences that violence may cause.
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8.

Purpose

To evaluate the relationship between recent stressful life events (SLEs), stress-related symptoms (SRSs), and health-related quality of life (HRQoL) in children beginning primary school.

Methods

A community-based sample of 6- to 8-year-old children (176 boys and 175 girls at baseline) participated in a prospective longitudinal study with three waves of data collection and 1-year interval between subsequent surveys, conducted in the Wielkopolska Province, Poland. Main exposures included nine recent stressful life events and psychosomatic and behavioural symptoms related to stress (SRSs), both self-reported by children. The outcome was total HRQoL assessed by a Polish version of the PedsQL? 4.0 (Pediatric Quality of Life Inventory) Generic Core Scales questionnaire, 5- to 7-year-old version. To evaluate the relationship between total HRQoL and predictor variables, a latent growth curve (LGC) model using multiple group design (boys and girls) with three waves and two time-varying covariates, the SLEs and SRSs, was applied.

Results

An unconditional multi-group LGC model revealed that the total HRQoL changed over time in a linear trajectory. After incorporating to the model, two time-varying covariates, SLEs and SRSs, the first predictor for HRQoL was only significant at the last wave in girls and at two subsequent waves, except for baseline, in boys. The second predictor revealed significant negative impacts on HRQoL over the entire period of time in both boys and girls suggesting that the pathway underlying the association of SLEs with HRQoL may be mediated by SRSs. Mean values of HRQoL at each time points did not show gender differences.

Conclusions

The findings of the present study may help to develop and implement a health and safety protection training programmes addressed to parents, caregivers, and practitioners to make children’s lives easier.
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9.

Purpose

To describe the implementation process of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) of children and adolescents in two pediatric clinics in Germany. The study focuses on the feasibility and user experience with the Kids-CAT, particularly the patients’ experience with the tool and the pediatricians’ experience with the Kids-CAT Report.

Methods

The Kids-CAT was completed by 312 children and adolescents with asthma, diabetes or rheumatoid arthritis. The test was applied during four clinical visits over a 1-year period. A feedback report with the test results was made available to the pediatricians. To assess both feasibility and acceptability, a multimethod research design was used. To assess the patients’ experience with the tool, the children and adolescents completed a questionnaire. To assess the clinicians’ experience, two focus groups were conducted with eight pediatricians.

Results

The children and adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was straightforward and easy to understand and integrate into clinical practice; they also expressed that routine implementation of the tool would be desirable and that the report was a valuable source of information, facilitating the assessment of self-reported HRQoL of their patients.

Conclusions

The Kids-CAT was considered an efficient and valuable tool for assessing HRQoL in children and adolescents. The Kids-CAT Report promises to be a useful adjunct to standard clinical care with the potential to improve patient–physician communication, enabling pediatricians to evaluate and monitor their young patients’ self-reported HRQoL.
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10.

Background

As infection with the Human Immunodeficiency Virus (HIV) has evolved to a chronic disease, perceived health-related quality of life (HRQoL) is becoming a prominent and important patient-reported outcome measure in HIV care. Literature discusses different factors influencing HRQoL in this population, however, currently no consensus exists about the main determinants. In this review a clear, up-to-date overview of the determinants influencing HRQOL among people living with HIV is provided.

Methods

All studies published before July 2013 that identified determinants of HRQoL among people living with HIV in high-income countries, were considered in this narrative review. PubMed, Web of Science and The Cochrane Library were consulted using the keywords ‘determinants’, ‘quality of life’, ‘HIV’ and ‘AIDS’. To be included, studies should have reported overall health and/or physical/mental health scores on a validated instrument and performed multivariable regression analyses to identify determinants that independently influence perceived HRQoL.

Results

In total, 49 studies were included for further analysis and they used a variety of HRQoL instruments: Medical Outcomes Study Short Form-36 or variants, Medical Outcomes Study-HIV, HIV Cost and Services Utilization Study measure, Multidimensional Quality of Life Questionnaire, HIV targeted quality of life instrument, Functional Assessment of Human Immunodeficiency Virus Infection, HIV Overview of Problems Evaluation System, EuroQol, Fanning Quality of Life scale, Health Index and PROQOL-HIV. In this review, the discussed determinants were thematically divided into socio-demographic, clinical, psychological and behavioural factors. Employment, immunological status, presence of symptoms, depression, social support and adherence to antiretroviral therapy were most frequently and consistently reported to be associated with HRQoL among people living with HIV.

Conclusions

HRQoL among people living with HIV is influenced by several determinants. These determinants independently, but simultaneously impact perceived HRQoL. Most HRQoL instruments do not capture all key determinants. We recommend that the choice for an instrument should depend on the purpose of the HRQoL assessment.
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11.

Objective

There is limited evidence on the long-term development of health-related quality of life (HRQoL) in eating disorders and its relation to eating disorder symptoms. Our objective was to measure long-term change in the HRQoL of eating disorder patients and compare it to normal population.

Methods

Fifty-four bulimia nervosa (BN) and forty-seven anorexia nervosa (AN) patients (ICD-10 diagnosis) entering treatment completed the 15D HRQoL questionnaire and the Eating Disorder Inventory (EDI) before and approximately 8 years after the start of treatment.

Results

Baseline HRQoL was severely impaired in the patients. During follow-up, mean HRQoL, body mass index (BMI) and EDI improved statistically significantly in both groups. BMI of AN patients reached normal values, but HRQoL was still severely impaired in both AN and BN compared to general population.

Conclusions

The long-term HRQoL after treatment continues to improve, but is still after 8 years poor. Eating disorders are very serious conditions with long-lasting impact on quality of life even after symptom remission.
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12.

Purpose

To examine caregivers’ health-related quality of life (HRQoL) and well-being during the first 3 years after their family member’s Alzheimer’s disease (AD) diagnosis and assessed the relationship between caregivers’ HRQoL, well-being, and the severity of AD. Further, to compare of caregivers’ HRQoL to general population.

Methods

Longitudinal design (36 months) after AD diagnosis of 236 caregiver–patient dyads. Linear regression was used to assess age- and gender-adjusted association between repeated measurements of caregivers’ HRQoL and the severity of AD. For comparison with general population, the National Health 2011 Health Examination Survey data was utilized.

Results

Caregivers had significantly lower HRQoL than age- and gender-standardized counterparts. Severity of AD was significantly (p < 0.05) associated with the mobility and depression dimensions of caregiver’s HRQoL but not with the total HRQoL index score.

Conclusions

Caregivers’ HRQoL seems to deteriorate earlier than previously noted. The severity of AD has not that great impact on caregiver’s HRQoL as assumed.
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13.

Purpose

Parents of children with chronic illnesses are at risk for poor health-related quality of life (HRQoL), with numerous identified risk factors, but the most informative statistical model considering their combined impact is unclear. The authors conceptualized risk for poor HRQoL using a summed model, comprehensive multivariate model, and latent profile analysis (LPA).

Methods

Community parents completed an online survey, providing information about demographics, child’s chronic illness, family functioning, and parent and child HRQoL. Parents reported that their children had a variety of chronic conditions (e.g., asthma, headaches, attention deficit/hyperactivity disorder, neurofibromatosis).

Results

The summed model did not account for a significant proportion of variance in parent HRQoL. The comprehensive multivariate model (R 2 ?=?0.614) and LPA (R 2 ?=?0.305) both significantly predicted parent HRQoL. The LPA identified two risk profiles for lower HRQoL: parents who reported milder illnesses, but poorer family functioning; and parents who reported greater disease severity, but better family functioning.

Conclusions

Comprehensive multivariate models or LPAs best conceptualize patterns of risk for poor parental HRQoL in the community; though the findings in the current community sample may not extend to parents recruited from specialty clinics whose children may have more severe chronic illnesses. Parents of children with mild chronic conditions are still at risk for poor HRQoL, warranting attention from health care providers.
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14.

Purpose

The main purpose of this meta-analysis was to evaluate the impact of ankylosing spondylitis on the health-related quality of life assessed by the Medical Outcomes Short-Form-36 questionnaire (SF-36).

Methods

A systematic literature search was performed on PubMed and Web of Science until January 22, 2016 to obtain eligible studies. Random effect model was performed to summarize the scores of each domain. The radar chart was used to compare the scores of AS patients with other health conditions. Spearman’s correlation analysis and meta-regression were used to explore the related factors. STATA (version 11.0) and SPSS (version 13.0) were adopted in this meta-analysis.

Results

Thirty-eight studies were included in this study, which were all reliable to summarize the scores of the SF-36. Pooled mean scores of the physical health domains ranged from 45.93 to 58.17, with the RP and PF domains being the lowest and the highest, respectively. Pooled mean scores of the mental health domains ranged from 47.49 to 62.52, with the VT and SF domains being the lowest and the highest, respectively. Besides, the physical component summary was lower than the mental component summary. BASDAI and BASFI were negatively associated with some domains of the SF-36 significantly. Patients with AS had a substantial impaired HRQoL in comparison with the general population.

Conclusions

AS could adversely affect the HRQoL of patients. Measuring HRQoL should be considered as an essential part of the overall assessment of health status of AS patients, which would provide valuable clues for improving the management of disease and making decisions regarding treatment.
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15.
16.

Background

Improved ability to treat chronic diseases have increased the interest in measuring health-related quality of life (HRQoL) in older adults. Hypertension and heart failure have been associated with decreased HRQoL.

Hypothesis

The aim of this study was to assess the association between health-related quality of life and use of angiotensin converting enzyme inhibitors in unselected community-dwelling elderly.

Methods

We analyzed data of all 387 subjects aged 75+ living in a rural Italian town, without exclusion criteria. HRQoL was assessed using the Health Utility Index Mark 3, which allows formal cost-effectiveness calculations. The association of the HRQoL score with use of ACE-I was analyzed by multivariable linear and logistic regression.

Results

The median HUI3 score was 0.31, and 186 participants (48%) reported a score above the median value. Use of ACE-I was reported by 34 (9%) participants, and confirmed by general practitioners. Use of these agents was associated with significantly better HRQoL (B=.16, 95% CI=.02 -.30; P=.025). Also, use of ACE-I was associated with increased probability of better HRQoL in logistic regression (OR=2.83; 95% CI=1.03 - 7.78; P=.044) after adjusting. No associations were found between the HRQoL score and use of calcium antagonists or beta-blockers.

Conclusions

Use of ACE-I, but not of other antihypertensives, is associated with better HRQoL among community-dwelling older adults. ACE-inhibitors might therefore present with the best cost-effectiveness ratio for the treatment of older populations.
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17.

Purpose

Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting.

Methods

The Kids-CAT study is a longitudinal prospective study with eight measurements over one year at two University Medical Centers in Germany. For validating the Kids-CAT, 270 consecutive 7- to 17-year-old patients with asthma (n = 52), diabetes (n = 182) or juvenile arthritis (n = 36) answered well-established HRQoL instruments (Pediatric Quality of Life Inventory? (PedsQL), KIDSCREEN-27) and scales measuring related constructs (e.g., social support, self-efficacy). Measurement precision, test–retest reliability, convergent and discriminant validity were investigated.

Results

The mean standard error of measurement ranged between .38 and .49 for the five dimensions, which equals a reliability between .86 and .76, respectively. The Kids-CAT measured most reliably in the lower HRQoL range. Convergent validity was supported by moderate to high correlations of the Kids-CAT dimensions with corresponding PedsQL dimensions ranging between .52 and .72. A lower correlation was found between the social dimensions of both instruments. Discriminant validity was confirmed by lower correlations with non-corresponding subscales of the PedsQL.

Conclusions

The Kids-CAT measures pediatric HRQoL reliably, particularly in lower areas of HRQoL. Its test–retest reliability should be re-investigated in future studies. The validity of the instrument was demonstrated. Overall, results suggest that the Kids-CAT is a promising candidate for detecting psychosocial needs in chronically ill children.
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18.
19.

Background and aims

The economic evaluation of tobacco control policies requires the adoption of assumptions about the impact of changes in smoking status on health-related quality of life (HRQoL). Estimates for such impacts are necessary for different populations. This paper aims to test whether smoking status has an independent effect on HRQoL over and above the effect derived from the increased likelihood of suffering a tobacco related disease, and to calculate utility values for the Spanish population.

Methods

Using data from the Spanish Encuesta Nacional de Salud of 2011–12, we estimate statistical models for HRQoL as measured by the EQ-5D-5L instrument as a function of smoking status. We include a comprehensive set of controls for biological, clinical, lifestyle and socioeconomic characteristics.

Results

Smoking status has an independent, statistically significant effect on HRQoL. However, the size of the effect is small. The typical smoking related diseases, such as lung cancer, are associated with a reduction in HRQoL about 5 times larger than the difference between current smokers and never smokers.

Conclusion

Attributing substantive HRQoL gains to quitting smoking as well as accounting for the concomitant HRQoL gain derived from a smaller likelihood of contracting tobacco related diseases might lead to an overestimation of the benefits of tobacco control policies. Nonetheless, the relatively large drops in HRQoL associated with being diagnosed with diseases that might be causally linked to tobacco suggest that such diseases should not be omitted from the economic evaluations of tobacco control policies.
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20.

Background

US veterans report lower health-related quality of life (HRQoL) relative to the general population. Identifying behavioral factors related to HRQoL that are malleable to change may inform interventions to improve well-being in this vulnerable group.

Purpose

The current study sought to characterize HRQoL in a largely male sample of veterans in addictions treatment, both in relation to US norms and in association with five recommended health behavior practices: regularly exercising, managing stress, having good sleep hygiene, consuming fruits and vegetables, and being tobacco free.

Methods

We assessed HRQoL with 250 veterans in addictions treatment (96 % male, mean age 53, range 24–77) using scales from four validated measures. Data reduction methods identified two principal components reflecting physical and mental HRQoL. Model testing of HRQoL associations with health behaviors adjusted for relevant demographic and treatment-related covariates.

Results

Compared to US norms, the sample had lower HRQoL scores. Better psychological HRQoL was associated with higher subjective social standing, absence of pain or trauma, lower alcohol severity, and monotonically with the sum of health behaviors (all p < 0.05). Specifically, psychological HRQoL was associated with regular exercise, stress management, and sleep hygiene. Regular exercise also related to better physical HRQoL. The models explained >40 % of the variance in HRQoL.

Conclusions

Exercise, sleep hygiene, and stress management are strongly associated with HRQoL among veterans in addictions treatment. Future research is needed to test the effect of interventions for improving well-being in this high-risk group.
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