Preference-based measures allow patients to report their level of health, and the responses are then scored using preference weights from a representative general population sample for use in cost utility analysis. The development process of new preference-based measures should ensure that valid items are selected to reflect the constructs of interest included in the measure and...
Researchers have long posited that response-shift effects may obfuscate treatment effects. The present work investigated possible response-shift effects in a recent clinical trial testing a new treatment for Neuromyelitis Optica Spectrum Disorder (NMOSD). This pivotal trial provided impressive support for the drug Eculizumab in preventing relapse, but less strong or null results...
Patients are experts in their own health and should be treated as equal partners in their care. Patient-reported outcome measures (PROMs) are an effective way of gathering patient feedback and can facilitate effectiveness and cost-effectiveness analysis to improve decision making and service improvement. The PROMs, PREMs & Effectiveness Programme was initiated in 2016 and aimed...
The first aim of this qualitative study was to identify general practitioners’ (GPs’) views on depression screening combined with GP-targeted feedback in primary care. The second aim was to determine the needs and preferences of GPs with respect to GP-targeted feedback to enhance the efficacy of depression screening. A semistructured qualitative interview was conducted with...
The aim of this study was to compare online, unsupervised and face-to-face (F2F), supervised valuation of EQ-5D-5L health states using composite time trade-off (cTTO) tasks. The official EuroQol experimental design and valuation protocol for the EQ-5D-5L of 86 health states were implemented in interviewer-assisted, F2F and unsupervised, online studies. Validity of preferences was...
To develop population norms for the EQ-5D-5L questionnaire based on a representative sample of Moscow citizens. We used quota sampling accounting for sex, age group and administrative district of residence. Respondents in randomly selected outdoor and indoor locations were surveyed with the official Russian paper-and-pencil version of the EQ-5D-5L questionnaire and a set of socio...
The experience sampling method (ESM) is used for intensive longitudinal time-series data collection during normal daily life. ESM data give information on momentary affect, activities and (social) context of, for example, patients suffering from mental disorders, and allows for person-specific feedback reports. However, current personalized feedback reports only display a...
The Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), developed in England, measures the effects of long-term care (LTC) services and carer support on informal carers’ quality of life (QoL). Translations of the ASCOT-Carer into other languages are useful for national and cross-national studies. The aim of this paper was to report on the translation and cultural...
To evaluate the psychometric performance of the Ankylosing Spondylitis Quality of Life (ASQoL) scale in patients with non-radiographic axial spondyloarthritis (nr-axSpA) to assess its appropriateness as an outcome measure in future clinical studies. Patients with active axSpA from a Phase III, randomized, double-blind, placebo-controlled trial (RAPID-axSpA, NCT01087762) were...
In the original publication, the summary statistics for child BMI in Tables 2 and 8 were incorrect. The correct version of tables (with updated summary statistics) are provided in this correction.
Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing...
We aim to compare the psychometric properties of the EQ-5D-5L questionnaire with the EQ-5D-3L version and EQ VAS, based on a survey conducted in a sample representing the general adult population of Poland. The survey comprised health-related quality of life (HRQoL) questionnaires: EQ-5D-5L, EQ VAS, SF-12 and EQ-5D-3L, together with demographic and socio-economic characteristics...
To identify the life domains that are most frequently reported to be affected in scoliosis patients undergoing brace treatment. A search within the PubMed database was conducted and a total of 60 publications were selected. We classified the studies based on the methods used to measure patients’ quality of life (QoL) and categorized the life domains reported to be affected. Self...
Health state utility values are commonly used to inform economic evaluations and determine the cost-effectiveness of an intervention. The aim of this systematic review is to summarise the utility values available to represent the health-related quality of life (HRQoL) of patients with thyroid cancer. Eight electronic databases were searched from January 1999 to April 2019 for...
This study explored the individual trajectories of health-related quality of life (HRQL) compared to recalled pre-burn level of HRQL and investigated whether burn severity and post-traumatic stress disorder (PTSD) symptoms increase the risk of not returning to pre-burn level of HRQL. Data were obtained from 309 adult patients with burns in a multicenter study. Patients completed...
Routine outcome monitoring can support clinicians to detect patients who deteriorate [not-on-track (NOT)] early in psychotherapy. Implemented Clinical Support Tools can direct clinicians’ attention towards potential obstacles to a positive treatment outcome and provide suggestions for suitable interventions. However, few studies have compared NOT patients to patients showing...
We evaluated the utility of the implementation science framework “Integrated Promoting Action on Research Implementation in Health Services” (i-PARIHS) for introducing patient-reported outcome measures (PROMs) into a medical oncology outpatient department. The i-PARIHS framework identifies four core constructs for implementation, including Facilitation, Innovation, Context and...
We examined the reliability and validity of the 6-item Headache Impact Test (HIT-6) specifically on patients with chronic migraine (CM) from the PROMISE-2 clinical trial. The conceptual framework of HIT-6 was evaluated using baseline data from the PROMISE-2 study (NCT02974153; N = 1072). A unidimensional graded response model within the item response theory (IRT) framework was...
The COVID-19 pandemic has far-reaching implications for HRQoL into the future. This disease affects many systems of the body, as well as having an impact on the psychological status of those with the condition, their families, and health care workers. Given the breadth of conditions that may result from COVID-19, it is critical that quality of life researchers begin preparing to...
The Quality of Life Alzheimer’s Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available. Different statistical models...
This article has been retracted. Please see the Retraction Notice for more detail: https://doi.org/10.1007/s11136-017-1576-7.
To evaluate the feasibility of implementing systematic patient symptom monitoring during treatment using a smartphone. Endometrial [n = 50], ovarian [n = 70] and breast [n = 193] cancer patients participated in text-based symptom reporting for up to 12 months. In order to promote equity, patients without a smartphone were provided with a device, with the phone charges paid by...
The CarerQol instrument has been designed and validated as an instrument able to measure both the positive and the negative impacts of caregiving on the quality of life of informal caregivers (CarerQol-7D), as well as their general happiness (CarerQol-VAS). The aim of this study was to assess the construct validity of the CarerQol in the Hungarian context. The CarerQol was...
Analysis of quality of life changes after radiotherapy with focus on the impact of time after treatment and prescription dose. Consecutive patients were treated with doses from 70.2/1.8 Gy (n = 206) to 72/1.8–2.0 Gy (n = 176) in a single centre and surveyed using the Expanded Prostate Cancer Index Composite questionnaire. Urinary and bowel bother scores decreased 1 / 3 / 6 points...