Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities.

Background: Approximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males.

Impact of in-hospital postoperative complications on quality of life up to 12 months after major abdominal surgery.

Background: Postoperative complications are common, but there are limited data regarding their implications on patients' quality of life. This study aimed to address this gap in the literature by analysing the impact of postoperative complications on patients' health-related quality of life.

Methods: Data from the Perioperative Quality Improvement Programme were analysed, and included patient-level data for 19 685 adults who underwent elective major abdominal procedures in England since 2016.

Cost-Effectiveness of Dementia Care Mapping in Care-Home Settings: Evaluation of a Randomised Controlled Trial.

Background: Behaviours such as agitation impact on the quality of life of care-home residents with dementia and increase healthcare use. Interventions to prevent these behaviours have little evidence supporting their effectiveness or cost-effectiveness. We conducted an economic evaluation alongside a trial assessing Dementia Care Mapping™ (DCM) versus usual care for reducing agitation, and highlight methodological challenges of conducting evaluations in this population and setting.

Cost-Effectiveness of Pain Management Strategies in Advanced Cancer.

Objectives: Uncontrolled pain in advanced cancer is a common problem and has significant impact on individuals' quality of life and use of healthcare resources. Interventions to help manage pain at the end of life are available, but there is limited economic evidence to support their wider implementation. We conducted a case study economic evaluation of two pain self-management interventions (PainCheck and Tackling Cancer Pain Toolkit [TCPT]) compared with usual care.

Exploration of likely engagement with Monetary Contingency Contracts for weight loss: a questionnaire study.

Monetary Contingency Contracts (MCCs) are schemes that ask individuals to pledge money that is returned contingent on behaviour change. In relation to weight loss, this study explored likely levels of engagement with MCCs, how much individuals would be willing to pay into an MCC, and how these amounts vary under different contract conditions. Fifty-six individuals with BMI above 25 who were motivated to lose weight were recruited.

Cost-Effectiveness of Tight Control of Inflammation in Early Psoriatic Arthritis: Economic Analysis of a Multicenter Randomized Controlled Trial.

Objective: Treat-to-target approaches have proved to be effective in rheumatoid arthritis, but have not been studied in psoriatic arthritis (PsA). This study was undertaken to examine the cost-effectiveness of tight control (TC) of inflammation in early PsA compared to standard care.

Methods: Cost-effectiveness analyses were undertaken alongside a UK-based, open-label, multicenter, randomized controlled trial.

Patient Preferences for Pain Management in Advanced Cancer: Results from a Discrete Choice Experiment.

Background: Pain from advanced cancer remains prevalent, severe and often under-treated.

Aim: The aim of this study was to conduct a discrete choice experiment with patients to understand their preferences for pain management services and inform service development.

Methods: Focus groups were used to develop the attributes and levels of the discrete choice experiment.

Effect of tight control of inflammation in early psoriatic arthritis (TICOPA): a UK multicentre, open-label, randomised controlled trial.

Background: Early intervention and tight control of inflammation optimise outcomes in rheumatoid arthritis but these approaches have not yet been studied in psoriatic arthritis. We aimed to assess the effect of tight control on early psoriatic arthritis using a treat-to-target approach.

Methods: For this open-label multicentre randomised controlled trial, adult patients (aged ≥18 years) with early psoriatic arthritis (<24 months symptom duration), who had not previously received treatment with any disease-modifying anti-rheumatic drugs, were enrolled from eight secondary care rheumatology centres in the UK.

Patient Acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: A Prospective Non-Randomized Comparison Study Across 6 Predialysis Services.

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Background: Patients are satisfied with their kidney care but want more support in making dialysis choices. Predialysis leaflets vary across services, with few being sufficient to enable patients' informed decision making. We describe the acceptability of a patient decision aid and feasibility of evaluating its effectiveness within usual predialysis practice.

The Cost Effectiveness of Docetaxel and Active Symptom Control versus Active Symptom Control Alone for Refractory Oesophagogastric Adenocarcinoma: Economic Analysis of the COUGAR-02 Trial.

Background: The COUGAR-02 trial recently showed survival and quality-of-life benefits of docetaxel and active symptom control (DXL + ASC) over active symptom control (ASC) alone in patients with refractory oesophagogastric adenocarcinoma.

Aim: The aim of this study was to conduct an economic evaluation conforming to National Institute for Health and Care Excellence (NICE) technology appraisal guidance to evaluate the cost effectiveness of DXL + ASC versus ASC from the perspective of the English National Health Service (NHS).

Methods: Cost-utility analyses were conducted using trial data.

Lifestyle referral assessment in an acute cardiology setting: study protocol for a randomized controlled feasibility trial.

Background: Lifestyle and behaviour change are important factors in the prevention of cardiovascular disease and reduction of premature mortality. Public health initiatives have focused on opportunities for healthcare staff to deliver lifestyle advice routinely in primary and secondary care but there is no consistent approach to onward referrals and the rate of uptake of advice remains low. We do not know if advice is more effective in supporting behaviour change when a systematic approach is taken that includes identification of barriers to change, directing patients toward services, referral to services, and feedback on outcome.

The cost-effectiveness of transcatheter aortic valve implantation versus surgical aortic valve replacement in patients with severe aortic stenosis at high operative risk.

Objective: To determine the cost-effectiveness of transcatheter aortic valve implantation (TAVI) compared with surgical aortic valve replacement (SAVR) in a high-risk aortic stenosis (AS) population.

Design: A cost-utility analysis employing the National Institute of Clinical Excellence (NICE) reference case design for technology appraisals.

Setting: The perspective of the UK National Health Service.

Serial change in health-related quality of life over 1 year after transcatheter aortic valve implantation: predictors of health outcomes.

Objectives: The goal of this study was to assess serial changes in patient health-related quality of life (HRQOL) over time and identify predictors of patient benefit.

Background: Severe aortic stenosis reduces the length and quality of a patient's life. Transcatheter aortic valve implantation (TAVI) is superior to standard medical therapy and noninferior to surgical aortic valve replacement for 1-year mortality.

Can we rely on the Dermatology Life Quality Index as a measure of the impact of psoriasis or atopic dermatitis?

The Dermatology Life Quality Index (DLQI) is a widely used health-related quality of life measure. However, little research has been conducted on its dimensionality. The objectives of the current study were to apply Rasch analysis to DLQI data to determine whether the scale is unidimensional, to assess its measurement properties, test the response format, and determine whether the measure exhibits differential item functioning (DIF) by disease (atopic dermatitis versus psoriasis), gender, or age group.

Testing a workplace physical activity intervention: a cluster randomized controlled trial.

Background: Increased physical activity levels benefit both an individuals' health and productivity at work. The purpose of the current study was to explore the impact and cost-effectiveness of a workplace physical activity intervention designed to increase physical activity levels.

Methods: A total of 1260 participants from 44 UK worksites (based within 5 organizations) were recruited to a cluster randomized controlled trial with worksites randomly allocated to an intervention or control condition.

Development and validation of the living with chronic obstructive pulmonary disease questionnaire.

Purpose: Available patient-reported outcome (PRO) measures for chronic obstructive pulmonary disease (COPD) focus primarily on impairment (symptoms) and activities (functioning). The purpose of the study was to develop a patient-based PRO measure for COPD that captures the overall everyday impact of living with COPD from the patient's perspective.

Methods: LCOPD items (Living with COPD Questionnaire) were generated from qualitative interviews in the U.

International development of the patient-reported outcome indices for multiple sclerosis (PRIMUS).

Background: The Patient-Reported Indices for Multiple Sclerosis (PRIMUS) comprises a suite of three scales for assessing symptoms, activity limitations, and quality of life in multiple sclerosis (MS). It was developed in the UK and has been shown to have excellent psychometric properties. This study describes the adaptation of eight language versions for Canadian English, Canadian French, French, German, Italian, Spanish, Swedish, and US English.

International development of the Unidimensional Fatigue Impact Scale (U-FIS).

Objective: The 22-item Unidimensional Fatigue Impact Scale (U-FIS) provides an index of the impact of fatigue on patients with multiple sclerosis (MS). The objective is to produce eight new language versions of the U-FIS: Canadian-English, Canadian-French, French, German, Italian, Spanish, Swedish, and US-English.

Methods: The U-FIS was translated via two translation panels.

Effects of method of translation of patient-reported health outcome questionnaires: a randomized study of the translation of the Rheumatoid Arthritis Quality of Life (RAQoL) Instrument for Sweden.

Aims: To compare two versions of a questionnaire translated using forward-backward (FB) translation and dual-panel (DP) methodologies regarding preference of wording and psychometric properties.

Methods: The Rheumatoid Arthritis Quality of Life instrument was adapted into Swedish by two independent groups using FB and DP methodologies, respectively. Seven out of thirty resulting items were identical.

Development and validation of the Asthma Life Impact Scale (ALIS).

Background: Current asthma patient-reported outcome (PRO) measures focus on symptoms and functioning and may not capture the holistic impact of asthma on the quality of life of the patient.

Objective: To develop a PRO measure capturing the overall impact of asthma on patient's quality of life.

Methods: Items for the Asthma Life Impact Scale (ALIS) were generated from patients with asthma during interviews in the UK and focus groups in the US.

Development and psychometric assessment of the COPD and Asthma Sleep Impact Scale (CASIS).

Background: Patients with respiratory disease experience disturbed sleep, but there is no widely accepted measure of sleep impairment due to respiratory disease. We developed and evaluated the psychometric performance of a patient-reported measure to assess the impact on sleep due to respiratory disease, the COPD and Asthma Sleep Impact Scale (CASIS).

Methods: Identification of the items forming the CASIS was guided by patient interviews and focus groups.

Further validation and responsiveness assessment of the Herpes Outbreak Impact Questionnaire and Herpes Symptom Checklist.

Objective: The Herpes Outbreak Impact Questionnaire (HOIQ) and Herpes Symptom Checklist (HSC) are patient-completed questionnaires for assessing genital herpes outbreaks. This report describes the validation of paper-and-pencil versions of the scales and responsiveness assessments in an Australian clinical trial.

Methods: Acceptability of the language of the original UK versions was tested with Australians.

Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses.

Background: Pulmonary Hypertension is a severe and incurable disease with poor prognosis. A suite of new disease-specific measures--the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) - was recently developed for use in this condition. The purpose of this study was to develop and validate a preference based measure from the CAMPHOR that could be used in cost-utility analyses.

The development of the Herpes Symptom Checklist and the Herpes Outbreak Impact Questionnaire.

Objective: To develop measures of the day-to-day symptomatic and functional impact of recurrent genital herpes (RGH) outbreaks. The Herpes Outbreak Impact Questionnaire (HOIQ) and the Herpes Symptom Checklist (HSC) were designed to be acceptable to clinical professionals and to reflect patients' experience.

Methods: Scale content was derived via literature review and interviews with RGH patients and physicians.