Measuring health-related quality of life in tuberculosis: a systematic review

Introduction  

Tuberculosis remains a major public health problem worldwide. In recent years, increasing efforts have been dedicated to assessing the health-related quality of life experienced by people infected with tuberculosis. The objectives of this study were to better understand the impact of tuberculosis and its treatment on people's quality of life, and to review quality of life instruments used in current tuberculosis research.     

The health-related quality of life of Indigenous populations: a global systematic review

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.

     

Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments

Purpose

Patient-reported outcome measures (PROMs) are becoming increasingly important in clinical practice. The implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking. The aim of this study is to evaluate the quality of self-administered HRQoL measurement instruments for use in patients with advanced cancer in clinical practice.

Methods

A systematic literature search was performed in PubMed, Embase, PsycINFO, and CINAHL to identify studies concerning self-administered HRQoL measurement instruments in patients with advanced cancer between January 1990 and September 2016. Quality of the measurement instruments was assessed by predefined criteria derived from the COSMIN checklist.

Results

Sixty-nine articles relating to 39 measurement instruments met the inclusion criteria. Information regarding important measurement properties was often incomplete. None of the instruments performed sufficient on all measurement properties. Considering available information, the EORTC QLQ-C15-PAL appeared to have adequate psychometric properties, together with the EORTC QLQ-BM22.

Conclusions

Many of the existing HRQoL measurement instruments have not yet been evaluated in an adequate manner. Validation of self-administered HRQoL measurement instruments is an ongoing development and should be prioritized. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in clinical practice.

     

Integrating health-related quality of life into cross-national clinical trials

When planning to implement health-related quality of life (HRQL) assessment in a multinational clinical trial, there are at least four general considerations: the natural history of the disease or condition, the characteristics of the population, the treatment under consideration, and the structure and function of the clinical trial organization. Each of these considerations must be addressed simultaneously when planning, implementing and analysing a cross-national clinical trial. There are five relevant polar components of the natural history of a given disease or condition: (1) time frame (acute versus chronic); (2) life threat (yes versus no); (3) symptomatology (present versus absent); (4) symptom expression (episodic versus constant); and (5) functional impact (present versus absent). Differences in population characteristics, (e.g., age, conditions, co-morbidity), embedded within any cross-national trial, must be addressed conceptually prior to initiating the trial, methodologically when planning implementation, and statistically after the collection of the data. In terms of treatment, issues such as adverse and positive effects and timing of effects must be considered. The methods entailed in planning, implementing and analysing HRQL data will depend upon the degree of centralization of personnel and resources within any given clinical trial. The range of possibilities runs from complete centralization, in which all planning and coordination of data collection and transmittal is done by one office, to complete decentralization, in which the work is distributed to participating sites and interested investigators. Finally, successful implementation of HRQL data collection is enhanced by heightening awareness of the importance of, and value in, assessing HRQL in clinical trials. The investigator embarking on a treatment trial can extend the outcome inquiry into broader areas of function and well-being than those defined by the more traditional symptom profiles, morbidity and mortality outcomes.     

Measuring health-related quality of life for child maltreatment: a systematic literature review

Background  

Child maltreatment causes substantial morbidity and mortality in the U.S. Morbidity associated with child maltreatment can reduce health-related quality of life. Accurately measuring the reduction in quality of life associated with child maltreatment is essential to the economic evaluation of educational programs and interventions to reduce the incidence of child maltreatment. The objective of this study was to review the literature for existing approaches and instruments for measuring quality-of-life for child maltreatment outcomes.     

Improving quality of life of children with cerebral palsy: a systematic review of clinical trials

Objective To systematically review the impact of different interventions on quality of life (QoL) for children with cerebral palsy. Methods English articles were sought from five major English databases from inceptions until March 2010. Keywords used consisted of four components (and their variants): (i) clinical condition: cerebral palsy; (ii) outcome measures: quality of life, well‐being; (iii) study design: clinical trials; and (iv) target population: people aged 0–18. Results Eight studies satisfied the inclusion criteria, all of which are of good to excellent quality (a Jadad score of 4 or above). The Pediatric Evaluation of Disability Inventory, the Pediatric Quality of Life Inventory, the TNO‐AZL Children's Health‐Related Quality of Life and the Caregiver Priorities and Child Health Index of Life with Disabilities were used to measure QoL. Significant positive results were reported by two studies using medicinal interventions (diazepam and intrathecal baclofen therapy, effect sizes 5.9, 9.1 respectively) and two studies employing motor control approach training (strength training and exercise training, former effect size being 3.8). Conclusion Current review suggests that positive effect was shown in medicinal and motor control interventions on QoL. However, no single interventional approach can demonstrate a consistent positive impact on QoL across different studies. Future studies are recommended to (i) provide a clear definition of QoL, and investigate the relationship between symptoms' severity and QoL; (ii) measure outcome at different time points to capture real effects of interventions; and (iii) make more use of valid outcome instruments, either self‐report or parent/caregiver proxy reports.     

Determinants of health-related quality of life after aneurysmal subarachnoid hemorrhage: a systematic review

Background and purpose

Many persons with subarachnoid hemorrhage (SAH) from a ruptured intracranial aneurysm recover to functional independence but nevertheless experience reduced quality of life (QoL). The aim of this study was to summarize the evidence on determinants of reduced QoL in this diagnostic group.

Methods

Databases PubMed, PsychINFO, and CINAHL were used to identify empirical studies reporting on quantitative relationships between possible determinants and QoL in persons with aneurysmal SAH and published in English. Determinants were classified using the International Classification of Functioning, Disability and Health (ICF).

Results

Twenty studies met the inclusion criteria for this review, in which 13 different HRQoL questionnaires were used. Determinants related to Body Structure & Function (clinical condition at admission, fatigue, and disturbed mood), Activity limitations (physical disability and cognitive complaints), and Personal factors (female gender, higher age, neuroticism, and passive coping) are consistently related to worse HRQoL after aneurysmal SAH. Treatment characteristics were not consistently related to HRQoL.

Conclusion

This study identified a broad range of determinants of HRQoL after aneurysmal SAH. The findings provide clues to tailor multidisciplinary rehabilitation programs. Further research is needed on participation, psychological characteristics, and environmental factors as determinants of HRQoL after SAH.     

The measurement of change of quality of life in clinical trials

A model is presented for the measurement of change of quality of life in clinical trials with time under the influence of one or more treatments. Quality of life is regarded as a multidimensional latent variable, and is measured through dichotomous item responses on a number of points in time. Change of quality of life is 'explained' with a latent logistic regression model which may include parameters for the time process, the effects of clinical treatments, and interaction parameters. By assuming the absence of patient/time interaction within treatment groups, the parameters of the time process and the treatment effects can be estimated independently of the latent quality of life parameters at the start of the treatment. Consequently, differential mortality, censoring mechanisms, and other mechanisms causing missing data can be ignored.     

Tooth loss and oral health-related quality of life: a systematic review and meta-analysis

Background  

It is increasingly recognized that the impact of disease on quality of life should be taken into account when assessing health status. It is likely that tooth loss, in most cases being a consequence of oral diseases, affects Oral Health-Related Quality of Life (OHRQoL). The aim of the present study is to systematically review the literature and to analyse the relationship between the number and location of missing teeth and oral health-related quality of life (OHRQoL). It was hypothesized that tooth loss is associated with an impairment of OHRQoL. Secondly, it was hypothesized that location and distribution of remaining teeth play an important role in this.     

Health status and (health-related) quality of life during the recovery of distal radius fractures: a systematic review

Purpose

Distal radius fractures (DRF) cause long-term functional limitations. A subgroup (21.2 %) will never fully recover after DRF. Therefore, it is important to consider the health status (HS) and (health-related) quality of life (HR)QOL of these patients. The aim of this systematic review was to describe (1) the HS and (HR)QOL outcomes following DRF, (2) sociodemographic, clinical, and psychosocial factors associated with HS and (HR)QOL, and to (3) evaluate the conceptualization of HS and (HR)QOL in these studies.

Methods

A systematic literature search was conducted in Pubmed, Embase, The Cochrane Library, and PsycINFO (January 1976–July 2012). A criteria list was used to assess the methodological quality of the studies.

Results

Twenty-six studies were included with a mean quality score of 7.7 (SD = 1.7). The majority of studies had a low methodological quality. Twenty-three studies (88.5 %) focused exclusively on HS and only three studies examined (HR)QOL. However, 34.8 % of the outcomes were labeled as (HR)QOL by the authors, while in fact, HS was assessed. Sex, age, educational level, living situation, and radiocarpal arthritis were associated with HS. In general, no differences were found in HS and (HR)QOL when comparing different treatment modalities.

Conclusions

The focus of outcome research in DRF is mainly on HS instead of (HR)QOL. HS instruments were often mislabeled as (HR)QOL instruments. With inconclusive results of mostly low-quality studies, there is a need for high-quality prospective follow-up studies measuring HS and/or (HR)QOL while using the correct terminology.     

Influence of sense of coherence on oral health-related quality of life: a systematic review

Purpose

The aim of the present study was to perform a systematic review of the literature for scientific evidence regarding the association between a sense of coherence (SOC) and oral health-related of quality of life (OHRQoL).

Methods

Electronic searches were performed in five databases. Manual searches were also performed. To be included, studies needed to address the relationship between SOC and OHRQoL. The risk of bias was evaluated using the Newcastle–Ottawa scales for cross-sectional and cohort studies and the Physiotherapy Evidence Database scale for clinical trials.

Results

Seven cross-sectional studies, four cohort studies, and one clinical trial were included in the present review. Two independent reviewers selected the studies, extracted that data, and performed the evaluations of methodological quality based on the standardized scales. The majority of authors found a significant association between a weak SOC and greater impact on OHRQoL, but some methodological flaws were found in the execution of the studies.

Conclusion

Based on the analysis of the studies included in the present systematic review, there is scientific evidence that a sense of coherence exerts an influence on oral health-related quality of life, but further population-based studies are needed to confirm such evidence.

     

Disease-specific health-related quality of life questionnaires for heart failure: a systematic review with meta-analyses

Background  Heart failure (HF) is an increasingly common condition affecting patients’ health-related quality of life (HRQL). However, there is little literature comparing HF-specific instruments. Our aim was to evaluate and compare data on the conceptual model and metric properties (reliability, validity and responsiveness) of HF-specific HRQL instruments, by performing a systematic review with meta-analyses. Methods and results  Of 2,541 articles initially identified, 421 were full-text reviewed. Ninety-four reported data on five questionnaires: Minnesota Living with Heart Failure Questionnaire (MLHFQ), Chronic Heart Failure Questionnaire (CHFQ), Quality of Life Questionnaire for Severe Heart Failure (QLQ-SHF), Kansas City Cardiomyopathy Questionnaire (KCCQ) and Left Ventricular Dysfunction (LVD-36) questionnaire. Metric properties (reliability, validity and responsiveness) were summarised using meta-analysis for pools above five estimates. Cronbach’s alpha coefficients were generally high (0.83–0.95) for overall scores and scales measuring physical health. Associations with four validity criteria (New York Heart Association [NYHA] class, six-minute walk test [6MWT] and short form-36 [SF-36] ‘Physical’ and ‘Social Functioning’) were moderate to strong (0.41–0.84), except for those between two CHFQ domains (fatigue and dyspnoea) and the NYHA (0.19 and 0.22). Pooled estimates of change from eight meta-analyses showed the MLHFQ to be highly responsive, with changes in overall score ranging from −9.6 (95% confidence interval [CI]: −4.1; −15.2) for placebo to −17.7 (95% CI: −15.3; −20.2) for pacing devices. The CHFQ and KCCQ also showed good sensitivity to change. Conclusions  Most of the questionnaires studied met minimum psychometric criteria, though current evidence would primarily support the use of the MLHFQ, followed by the KCCQ and CHFQ. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users.     

Measuring and analysing quality of life in cancer clinical trials: a review

After brief consideration of the definition of the term 'quality of life', methods previously adopted and problems encountered in assessing and evaluating quality of life in clinical studies of cancer are reviewed. Desirable properties of any such assessment methods and approaches to the analysis of quality of life data are discussed. Illustrations are provided by reference to the methods of assessment of quality of life incorporated in two recently-initiated studies of cancer treatment.     

Physical activity level and health-related quality of life in the general adult population: a systematic review

OBJECTIVE: Little is known regarding health-related quality of life and its relation with physical activity level in the general population. Our primary objective was to systematically review data examining this relationship. METHODS: We systematically searched MEDLINE, EMBASE, CINAHL, and PsycINFO for health-related quality of life and physical activity related keywords in titles, abstracts, or indexing fields. RESULTS: From 1426 retrieved references, 55 citations were judged to require further evaluation. Fourteen studies were retained for data extraction and analysis; seven were cross-sectional studies, two were cohort studies, four were randomized controlled trials and one used a combined cross sectional and longitudinal design. Thirteen different methods of physical activity assessment were used. Most health-related quality of life instruments related to the Medical Outcome Study SF-36 questionnaire. Cross-sectional studies showed a consistently positive association between self-reported physical activity and health-related quality of life. The largest cross-sectional study reported an adjusted odds ratio of "having 14 or more unhealthy days" during the previous month to be 0.40 (95% Confidence Interval 0.36-0.45) for those meeting recommended levels of physical activity compared to inactive subjects. Cohort studies and randomized controlled trials tended to show a positive effect of physical activity on health-related quality of life, but similar to the cross-sectional studies, had methodological limitations. CONCLUSION: Cross-sectional data showed a consistently positive association between physical activity level and health-related quality of life. Limited evidence from randomized controlled trials and cohort studies precludes a definitive statement about the nature of this association.     

The quality of systematic reviews of health-related outcome measurement instruments

Background

Systematic reviews of outcome measurement instruments are important tools for the selection of instruments for research and clinical practice. Our aim was to assess the quality of systematic reviews of health-related outcome measurement instruments and to determine whether the quality has improved since our previous study in 2007.

Methods

A systematic literature search was performed in MEDLINE and EMBASE between July 1, 2013, and June 19, 2014. The quality of the reviews was rated using a study-specific checklist.

Results

A total of 102 reviews were included. In many reviews the search strategy was considered not comprehensive; in only 59 % of the reviews a search was performed in EMBASE and in about half of the reviews there was doubt about the comprehensiveness of the search terms used for type of measurement instruments and measurement properties. In 41 % of the reviews, compared to 30 % in our previous study, the methodological quality of the included studies was assessed. In 58 %, compared to 55 %, the quality of the included instruments was assessed. In 42 %, compared to 7 %, a data synthesis was performed in which the results from multiple studies on the same instrument were somehow combined.

Conclusion

Despite a clear improvement in the quality of systematic reviews of outcome measurement instruments in comparison with our previous study in 2007, there is still room for improvement with regard to the search strategy, and especially the quality assessment of the included studies and the included instruments, and the data synthesis.

     

The effect of whole body vibration on health-related quality of life in patients with chronic conditions: a systematic review

Quality of Life Research - To identify the effects of whole body vibration (WBV) on health-related quality of life (HRQOL) in patients with chronic conditions. Five databases (the Cochrane Library,...     

The health-related quality of life of ankylosing spondylitis patients assessed by SF-36: a systematic review and meta-analysis

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.

     

Patterns of reporting health-related quality of life outcomes in randomized clinical trials: implications for clinicians and quality of life researchers

Purpose  

To assess the patterns of, and trends over time in, health-related quality of life (HRQL) reporting in randomized controlled trials (RCTs).     

The effectiveness of psychosocial interventions designed to improve health-related quality of life (HRQOL) amongst asthmatic children and their families: a systematic review

Purpose

Asthmatic children are at risk of compromised health-related quality of life (HRQOL) compared with their healthy peers. This systematic review reports the range and effectiveness of psychosocial interventions designed to improve HRQOL amongst asthmatic children, adolescents, and their families.

Method

Data sources included The Cochrane Airways Group Trials Register of trials, PubMed database, and reference lists from review articles.

Results

Eighteen studies of psychosocial interventions were identified. Interventions were designed to improve HRQOL amongst a range of psychosocial, health care, school-related and clinical outcomes, and were delivered in numerous settings and formats. Four studies reported that interventions were effective for significant improvements in child overall HRQOL scores. These include asthma education (n?=?2), asthma education plus problem solving (n?=?1), and art therapy (n?=?1).

Conclusions

Most interventions focussed on the delivery of asthma education to children, with the purpose of improving knowledge about asthma and disease management. There is limited evidence to suggest that interventions currently available are effective for significantly improving HRQOL amongst asthmatic children, adolescents, and their families. Most interventions lacked a theoretical basis and did not focus on family functioning variables. Multi-component interventions that incorporate asthma education along with strategies to assist families with implementing behaviour change towards improved asthma management are required. Future interventions should also attempt to address the wider context of family functioning likely to contribute to the family??s ability to engage in successful asthma management in order to improve HRQOL.