Quality of Life Research

http://link.springer.com/journal/11136

List of Papers (Total 430)

The relationship between internalized stigma and quality of life among people with mental illness: are self-esteem and sense of coherence sequential mediators?

Purpose To elucidate the mechanism through which internalized stigma reduces the quality of life (QoL) of people with mental illness by exploring the mediating roles of self-esteem and sense of coherence (SOC). Methods A cross-sectional analysis of 229 patients diagnosed with schizophrenia or affective disorders was undertaken to test a sequential mediation model assuming that more ...

Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

Purpose Since 2012, PCORI has been funding patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders in the research, a requirement that is unique among the US funders of clinical research. This paper presents PCORI’s evaluation framework for assessing the short- and long-term impacts of engagement; describes engagement in ...

Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure

Aims The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure. Methods Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric ...

Clinical setting-based smoking cessation programme and the quality of life in people living with HIV in Austria and Germany

Purpose To report on the global quality of life (QOL) in people living with HIV (PLWHIV) and how a smoking cessation intervention influences the changes in QOL. Methods Participants were asked to fill out a questionnaire during visits to their HIV outpatient clinic consisting of sociodemographic information, general health data and the WHOQOL HIV-Bref. Exhaled carbon monoxide ...

Online support groups for head and neck cancer and health-related quality of life

Purpose To investigate the association between using online support groups (OSGs) and health-related quality of life (HRQoL), and the psychosocial factors that may influence this association among individuals with head and neck (H&N) cancer. Method A sample of 199 persons with H&N cancer using four OSGs completed an online questionnaire using six pre-validated measures for social ...

The impact of quality-of-life data in relative effectiveness assessments of new anti-cancer drugs in European countries

Purpose The aim of this study is to investigate the role of health-related quality-of-life (QoL) data in relative effectiveness assessments (REAs) of new anti-cancer drugs across European jurisdictions, during health technology assessment procedures. Methods Comparative analysis of guidelines and publicly available REAs in six European jurisdictions of anti-cancer drugs approved by ...

Risks associated with antiretroviral treatment for human immunodeficiency virus (HIV): qualitative analysis of social media data and health state utility valuation

Purpose Despite benefits of antiretroviral therapies (ART), people with HIV infection have increased risk of cardiovascular disease, kidney disease, and low bone mineral density. Some ARTs increase risk of these events. The purpose of this study was to examine patients’ perspectives of these risks and estimate health state utilities associated with these risks for use in ...

An exploration of differences between Japan and two European countries in the self-reporting and valuation of pain and discomfort on the EQ-5D

Purpose To investigate the systematic differences in the self-reporting and valuation of overall health and, in particular, pain/discomfort between three countries (England/UK, Japan, and Spain) on the EQ-5D. Methods Existing datasets were used to explore differences in responses on the EQ-5D descriptive system between Japan (3L and 5L), the UK (3L), England (5L), and Spain (5L), ...

Quality-of-life: a many-splendored thing? Belgian population norms and 34 potential determinants explored by beta regression

Purpose To identify determinants of health-related quality-of-life in the Belgian population and to provide age-specific population norms of health-related quality-of-life. Methods Between September 2010 and February 2011, a representative sample of 1774 persons (age 0–99) was surveyed using the standard Euroqol questionnaire (EQ-5D-3L) with a Visual Analogue Scale (VAS). ...

Symptom clusters for revising scale membership in the analysis of prostate cancer patient reported outcome measures: a secondary data analysis of the Medical Research Council RT01 trial (ISCRTN47772397)

Purpose To investigate the role of symptom clusters in the analysis and utilisation of patient reported outcome measures (PROMs) for data modelling and clinical practice. To compare symptom clusters with scales, and to explore their value in PROMs interpretation and symptom management. Methods A dataset called RT01 (ISCRTN47772397) of 843 prostate cancer patients was used. PROMs ...

The patient’s experience of primary ciliary dyskinesia: a systematic review

Background Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of ...

The association of catastrophizing with quality-of-life outcomes in patients with irritable bowel syndrome

Background Catastrophizing is a cognitive process characterized by a propensity to concentrate on and magnify the value of an actual or anticipated painful stimulus and negatively assesses one’s ability to cope. Catastrophizing is an important predictor of pain-related outcomes. A cornerstone symptom of irritable bowel syndrome (IBS) is abdominal pain or discomfort. Also ...

Symptom burden and life challenges reported by adult chordoma patients and their caregivers

Purpose This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience. Methods In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life ...

Associations of adipose and muscle tissue parameters at colorectal cancer diagnosis with long-term health-related quality of life

Purpose Increased visceral adiposity (visceral obesity) and muscle wasting (sarcopenia) at colorectal cancer (CRC) diagnosis, quantified by computed tomography (CT) image analysis, have been unfavorably associated with short-term clinical outcomes and survival, but associations with long-term health-related quality of life (HRQoL) have not been investigated. We studied associations ...

Executive function as a mediator in the link between single or complex trauma and posttraumatic stress in children and adolescents

Purpose In this study, we examined whether there is a mediating role of executive function (EF) in the relationship between trauma exposure and posttraumatic stress in youth. Methods Children and adolescents exposed to trauma were recruited at an academic center for child psychiatry in The Netherlands. The total sample consisted of 119 children from 9 to 17 years old (M = 13.65, SD ...

Utility scores for different health states related to depression: individual participant data analysis

Objectives Depression is associated with considerable impairments in health-related quality-of-life. However, the relationship between different health states related to depression severity and utility scores is unclear. The aim of this study was to evaluate whether utility scores are different for various health states related to depression severity. Methods We gathered individual ...

Gender-related differences in the multi-pathway effect of social determinants on quality of life in older age—the COURAGE in Europe project

Purpose Gender-related differences in life expectancy, prevalence of chronic conditions and level of disability in the process of ageing have been broadly described. Less is known about social determinants, which may have different impacts on quality of life in men and women. The investigation aims to reveal gender-related differences in social determinants on quality of life ...

Understanding burden of illness for child growth hormone deficiency

Purpose Research demonstrates that children and adolescents with growth hormone deficiency (GHD) are impacted in multiple ways beyond their short stature; however, there are no disease-specific measures to assess these impacts. The purpose of this study was to examine the burden of GHD on children and adolescents, and to conduct concept elicitation to develop a model of the impact ...

Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer

Purpose For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and ...

The Weiss Functional Impairment Rating Scale-Parent Form for assessing ADHD: evaluating diagnostic accuracy and determining optimal thresholds using ROC analysis

Purpose The Weiss Functional Impairment Rating Scale-Parent Form (WFIRS-P) is a 50-item scale that assesses functional impairment on six clinically relevant domains typically affected in attention-deficit/hyperactivity disorder (ADHD). As functional impairment is central to ADHD, the WFIRS-P offers potential as a tool for assessing functional impairment in ADHD. These analyses were ...

Longitudinal measurement invariance of the Dutch Outcome Questionnaire-45 in a clinical sample

Purpose In the absence of measurement invariance across measurement occasions, change scores based on pretest–posttest measurements may be inaccurate representations of real change on the latent variable. In this study, we examined whether measurement invariance held in the Dutch version of Outcome Questionnaire-45 (OQ-45). Method Using secondary data analysis of a sample of N = ...

Cultural values: can they explain self-reported health?

Purpose Self-reported health (SRH) is a measure widely used in health research and population studies. Differences in SRH have been observed between countries and cultural values have been hypothesized to partly explain such differences. Cultural values can be operationalized by two cultural dimensions using the World Values Survey (WVS), namely the traditional/rational–secular and ...