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A review of quality of life (QOL) assessments and indicators: Towards a "QOL-Climate" assessment framework.

ABSTRACT: Quality of life (QOL), although a complex and amorphous concept, is a term that warrants attention, especially in discussions on issues that touch on the impacts of climate change and variability. Based on the principles of RepOrting standards for Systematic Evidence Synthesis, we present a systematic review aimed at gaining insights into the conceptualization and methodological construct of previous studies regarding QOL and QOL-related indexes. We find that (i) QOL assessments vary in terms of conceptual foundations, dimensions, indicators, and units of analysis, (ii) social indicators are consistently used across assessments, (iii) most assessments consider indicators that pertain to the livability of the environment, and (iv) QOL can be based on objective indicators and/or subjective well-being, and on a composite index or unaggregated dimensions and indicators. However, we also find that QOL assessments remain poorly connected with climate-related issues, an important research gap. Our proposed "QOL-Climate" assessment framework, designed to capture the social-ecological impacts of climate change and variability, can potentially help fill this gap.

SUBMITTER: Estoque RC

PROVIDER: S-EPMC6486941 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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A review of quality of life (QOL) assessments and indicators: Towards a "QOL-Climate" assessment framework.

Estoque Ronald C RC Togawa Takuya T Ooba Makoto M Gomi Kei K Nakamura Shogo S Hijioka Yasuaki Y Kameyama Yasuko Y

Ambio 20180911 6

Quality of life (QOL), although a complex and amorphous concept, is a term that warrants attention, especially in discussions on issues that touch on the impacts of climate change and variability. Based on the principles of RepOrting standards for Systematic Evidence Synthesis, we present a systematic review aimed at gaining insights into the conceptualization and methodological construct of previous studies regarding QOL and QOL-related indexes. We find that (i) QOL assessments vary in terms of ...[more]

PMID: 30206898

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Project description:BACKGROUND: Phenylketonuria (PKU) is a chronic inborn error of amino acid metabolism that requires lifelong follow-up and intervention, which may represent strains on Quality of Life (QoL). This observational study evaluated QoL in a cohort of PKU patients, using updated and detailed instruments. METHODS: 22 patients with mild PKU respondent to BH4 and 21 patients with classical PKU treated with diet were recruited in this study. Adult patients completed WHOQOL questionnaire-100 (WHOQOL-100) and pediatric patients the Pediatric QoL inventory (PedsQL(TM)). Psychiatric and mood disorders were also evaluated using TAD or BDI and STAI-Y inventories. A multivariable linear regression model was fitted to investigate the predictors of QoL, including age, sex, treatment type, length of current treatment, educational level and employment status (only for adults) as covariates. Results were presented as regression coefficients with 95% confidence interval. RESULTS: Global QoL scores were within normal range both in patients with mild and classical disease but global QoL scores were significantly higher in patients with mild PKU under BH4 treatment as compared to those affected by classical disease who were under diet regimen. Furthermore, QoL significantly increased in long treated PKU patients. Among adult patients, QoL scores were significantly lower in males, in patients with lower education and in those employed or unemployed as compared to students (baseline). CONCLUSIONS: Both diet and medical treatment based upon BH4 seem to be associated with higher QoL in the long run. However, patients with mild PKU can rely on BH4 to achieve a higher Phe tolerance and a better compliance to therapy due to diet relaxation/avoidance. Some specific categories of patients with a lower QoL should be investigated more in depth, engaging with those at risk of lower treatment compliance. The questionnaires employed in the present study seemed to be able to effectively detect criticalities in QoL assessment and represent an advance from previous inventories employed in the past.

Project description:BackroundThe number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used.MethodsWe reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors.ResultsWe identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment.ConclusionsCompared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

Project description:BackgroundAdvanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population.MethodsTo identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices.ResultsApart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version.ConclusionsAdvance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Project description:Objectives: The assessment of health-related quality of life (HRQoL) is becoming increasingly important in companion animals. This study describes a systematic review and development of a proposed conceptual framework to assess HRQoL in cats with osteoarthritis (OA). Methods: The conceptual framework was developed according to published guidelines. A comprehensive search of the CAB Direct, Scopus, PubMed, and Web of Science databases was carried out for publications in English from inception to November 12, 2019. Search words used were "cat", "feline", "chronic pain", "pain", and "quality of life". Publications were selected if they were full-text and peer-reviewed, based on primary data, and identified or measured behavioral symptoms of chronic musculoskeletal pain in cats. A systematic review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A data extraction form was developed from categories identified in the literature review and piloted on a small number of studies to ascertain the appropriateness for relevant data extraction. Categories were then finalized, and key domains were identified. The domains were then synthesized to develop a conceptual framework. Results: A total of 454 studies were identified, of which 14 met the eligibility criteria and were included in the meta-synthesis. All 14 were assessed to be of good quality. Seven domains related to HRQoL in cats with OA were thematically identified from the data: mobility, physical appearance, energy and vitality, mood, pain expression, sociability, and physical and mental wellbeing. The three main HRQoL domains were pain expression, mobility, and physical and mental wellbeing, which impacted all the others. Pain and mobility impacted all six other domains, with increased pain and decreased mobility negatively impacting physical appearance, energy and vitality, mood, sociability, and physical and mental wellbeing. Conclusions and Relevance: This is the first study to develop an evidence-based conceptual framework for the assessment of HRQoL in cats with OA. The proposed conceptual framework suggests that effective management of chronic pain in cats may improve their overall HRQoL.

Project description:BACKGROUND:The implementation of neonatal screening and the early initiation of lifelong therapy have helped to prevent severe complications and enabled much more favorable outcomes for early-treated phenylketonuria (ETPKU) patients. However, PKU patients tend to develop subtle cognitive and psychosocial abnormalities and the strict dietary therapy can present financial and social burden. Thus, PKU is expected to affect the quality of life (QoL) of these patients. There is insufficient evidence regarding the relationship between metabolic control and Health-Related QoL (HRQoL). We aimed to assess the effect of short- and long-term therapy on QoL among Hungarian adult PKU patients using the standardized PKU-specific PKU-QoL questionnaire. Methods: We conducted a single-centre, cross-sectional, observational study in Hungary. We included adult PKU patients treated with diet and amino acid supplements only. Patients reported HRQoL using the standardized adult PKU-QoL questionnaire and mean blood Phe concentrations were assessed for three different time periods: the previous 10 years, the previous year and concentration at the time of completing the questionnaire. The correlation between patients' QoL scores and their Phe levels was assessed. The classical PKU group was further divided into "good" and "suboptimal" adherence groups based on individual mean Phe levels in the examined time period. We evaluated differences in QoL among the two subgroups of classical PKU patients. QoL scores between classical and non-classical patients were also compared. Results: Data from 88 adult patients were analysed (66 had classical PKU). No median PKU-QoL score reached major or severe impact/frequent symptoms in any domain. The highest scores (meaning larger burden) were mostly related to emotional impact of PKU and disease management. When performing correlation analysis between Phe levels and QoL scores by all patients we found weak to fair positive correlation in several domains either short or long term. Patients with classical PKU reported greater financial impact of PKU than patients with less severe PKU. Classical PKU patients with good therapy adherence tended to report better HRQoL scores than patients with suboptimal adherence. Conclusion: We conclude that patients showed good HRQoL using the PKU-specific questionnaire. Our study demonstrates that suboptimal metabolic control is negatively associated with patients' HRQoL.

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A review of quality of life (QOL) assessments and indicators: Towards a "QOL-Climate" assessment framework.

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A review of quality of life (QOL) assessments and indicators: Towards a "QOL-Climate" assessment framework.

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