Quality of Life Research

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

List of Papers (Total 466)

Psychometric evaluation of an item bank for computerized adaptive testing of the EORTC QLQ-C30 cognitive functioning dimension in cancer patients

BackgroundThe European Organisation of Research and Treatment of Cancer (EORTC) Quality of Life Group is developing computerized adaptive testing (CAT) versions of all EORTC Quality of Life Questionnaire (QLQ-C30) scales with the aim to enhance measurement precision. Here we present the results on the field-testing and psychometric evaluation of the item bank for cognitive...

Long-term QALY-weights among spouses of dependent and independent midlife stroke survivors

Purpose The aim of this study was to investigate whether the dependency of midlife stroke survivors had any long-term impact on their spouses’ QALY-weights. Method Data on stroke survivors, controls, and spouses were collected from the 7-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke. Health-related quality of life was assessed by the SF-36, and the preference...

Item usage in a multidimensional computerized adaptive test (MCAT) measuring health-related quality of life

Purpose Examining item usage is an important step in evaluating the performance of a computerized adaptive test (CAT). We study item usage for a newly developed multidimensional CAT which draws items from three PROMIS domains, as well as a disease-specific one. Methods The multidimensional item bank used in the current study contained 194 items from four domains: the PROMIS...

Measuring everyday functional competence using the Rasch assessment of everyday activity limitations (REAL) item bank

Objective Traditional patient-reported physical function instruments often poorly differentiate patients with mild-to-moderate disability. We describe the development and psychometric evaluation of a generic item bank for measuring everyday activity limitations in outpatient populations. Study design and setting Seventy-two items generated from patient interviews and mapped to...

Mapping of the DLQI scores to EQ-5D utility values using ordinal logistic regression

Purpose The Dermatology Life Quality Index (DLQI) and the European Quality of Life-5 Dimension (EQ-5D) are separate measures that may be used to gather health-related quality of life (HRQoL) information from patients. The EQ-5D is a generic measure from which health utility estimates can be derived, whereas the DLQI is a specialty-specific measure to assess HRQoL. To reduce the...

Coping profiles and subjective well-being among people living with HIV: less intensive coping corresponds with better well-being

Purpose The aim of this study was to investigate the relationship between coping strategies and subjective well-being (SWB) among people living with HIV (PLWH) using the latent profile analysis (LPA) with control for socio-medical covariates. Methods The sample comprised five hundred and thirty people (N = 530) with a confirmed diagnosis of HIV+. The study was cross-sectional...

The impact of older person’s frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project

Purpose To examine the impact of changes in an older person’s frailty on the care-related quality of life of their informal caregiver. Methods Five research projects in the TOPICS-MDS database with data of both older person and informal caregiver at baseline and after 12 months follow-up were selected. Frailty was measured in five health domains (functional limitations...

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...

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

AimsThe purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.MethodsQualitative 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...

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...

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 cost...

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...