The relationship between subjective cognitive decline and cognitive leisure activity engagement: A systematic review.

Background And Objectives: Subjective cognitive decline (SCD) is a common experience of self-perceived decline without objective cognitive impairment. It has been theorised that SCD is associated with participation in cognitive leisure activities (CLA), but the evidence base is multifarious and unclear. The purpose of this systematic review was to synthesize current evidence to determine the association between SCD and CLA engagement.

The comprehensibility continuum: a novel method for analysing comprehensibility of patient reported outcome measures.

Purpose: Evidence of comprehensibility is frequently required during the development of patient reported outcome measures (PROMs); the respondent's interpretation of PROM items needs to align with intended meanings. Cognitive interviews are recommended for investigating PROM comprehensibility, yet guidance for analysis is lacking. Consequently, the quality and trustworthiness of cognitive interview data and analysis is threatened, as there is no clear procedure detailing how analysts can systematically, and consistently, identify evidence that respondent interpretations align/misalign with intended meanings.

Is self-disgust an implicit or explicit emotional schema?

Self-disgust, a negative self-conscious emotional schema that is associated with mental health difficulties in both clinical and non-clinical populations, is typically assessed with self-reported measures that target physical and behavioural aspects of the self. The aim of the present research was to develop and validate a novel implicit self-disgust measure (ISDM) using an Implicit Association Task (IAT) paradigm, across three studies. Study 1 developed a list of disgust-related and positive words that were rated for emotional valence and arousal and informed the content of the ISDM.

The Association Between Physical Distancing Behaviors to Avoid COVID-19 and Health-Related Quality of Life in Immunocompromised and Nonimmunocompromised Individuals: Patient-Informed Protocol for the Observational, Cross-Sectional EAGLE Study.

Background: Immunocompromised individuals are known to respond inadequately to SARS-CoV-2 vaccines, placing them at high risk of severe or fatal COVID-19. Thus, immunocompromised individuals and their caregivers may still practice varying degrees of social or physical distancing to avoid COVID-19. However, the association between physical distancing to avoid COVID-19 and quality of life has not been comprehensively evaluated in any study.

Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis: A Systematic Review and Conceptual Framework.

Background And Objectives: The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.

Methods: Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals).

Development of a new health-related quality of life measure for people with diabetes who experience hypoglycaemia: the Hypo-RESOLVE QoL.

Aims/hypothesis: Valid and reliable patient-reported outcome measures are vital for assessing disease impact, responsiveness to healthcare and the cost-effectiveness of interventions. A recent review has questioned the ability of existing measures to assess hypoglycaemia-related impacts on health-related quality of life for people with diabetes. This mixed-methods project was designed to produce a novel health-related quality of life patient-reported outcome measure in hypoglycaemia: the Hypo-RESOLVE QoL.

Understanding UK public views on normative decisions made to value health-related quality of life in children: A qualitative study.

Developing methodology for measuring and valuing child health-related quality of life (HRQoL) is a priority for health technology agencies. One aspect of this is normative decisions that are made in child HRQoL valuation. This qualitative study aimed to better understand adult public opinion on the normative questions of whose preferences to elicit (adults, children, or both) and from which perspective (who should be imagined living in impaired health), when valuing child HRQoL.

Hypothetical versus experienced health state valuation: a qualitative study of adult general public views and preferences.

Objectives: Responses from hypothetical and experienced valuation tasks of health-related quality of life differ, yet there is limited understanding of why these differences exist, what members of the public think about them, and acceptable resolutions. This study explores public understanding of, opinions on, and potential solutions to differences between hypothetical versus experienced responses, in the context of allocating health resources.

Methods: Six focus groups with 30 members of the UK adult public were conducted, transcribed verbatim, and analysed using framework analysis.

A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy.

Purpose: Duchenne muscular dystrophy (DMD) is a rare x-linked neuromuscular condition predominantly affecting boys and men. There is a paucity of research qualitatively detailing the lived experience of health-related quality of life (HRQoL) for people with DMD. The aim of this study was to identify a comprehensive framework for better understanding HRQoL in DMD.

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Background: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided.

Aim: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools.

What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals.

Background: Evaluating quality in mental healthcare is essential for ensuring a high-quality experience for service users (SUs). Policy-defined quality indicators, however, risk misalignment with the perspectives of SUs and mental healthcare professionals (MHPs). There is value in exploring how SUs and frontline MHPs think quality should be measured.

Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN.

Introduction: Duchenne muscular dystrophy is a rare, progressive, life-limiting genetic neuromuscular condition that significantly impacts the quality of life of informal caregivers. Carer quality of life is measured using heterogeneous self-report scales, yet their suitability for Duchenne remains unclear. This review aimed to identify and evaluate the reliability and validity of quality of life instruments in Duchenne carers.

Valuing quality in mental healthcare: A discrete choice experiment eliciting preferences from mental healthcare service users, mental healthcare professionals and the general population.

High and sustained healthcare quality is important worldwide, though health policy may prioritise the achievement of certain aspects of quality over others. This study determines the relative importance of different aspects of mental healthcare quality to different stakeholders by eliciting preferences in a UK sample using a discrete choice experiment (DCE). DCE attributes were generated using triangulation between policy documents and mental healthcare service user and mental healthcare professional views, whilst ensuring attributes were measurable using available data.

Exploring the Issues of Valuing Child and Adolescent Health States Using a Mixed Sample of Adolescents and Adults.

Preferences for child and adolescent health states used to generate health state utility values can be elicited from adults, young adults, adolescents, or combinations of these. This commentary paper provides a critical overview of issues and implications arising from valuing child and adolescent health states using a novel approach of a mixed sample of adolescents and adults. The commentary is informed by critical analysis of normative, ethical, practical and theoretical arguments in the health state valuation literature.

Transforming challenges into opportunities: conducting health preference research during the COVID-19 pandemic and beyond.

The disruptions to health research during the COVID-19 pandemic are being recognized globally, and there is a growing need for understanding the pandemic's impact on the health and health preferences of patients, caregivers, and the general public. Ongoing and planned health preference research (HPR) has been affected due to problems associated with recruitment, data collection, and data interpretation. While there are no "one size fits all" solutions, this commentary summarizes the key challenges in HPR within the context of the pandemic and offers pragmatic solutions and directions for future research.

Valuing child and adolescent health: a qualitative study on different perspectives and priorities taken by the adult general public.

Background: Quantitative health preference research has shown that different "perspectives", defined here as who is imagined to be experiencing particular health states, impact stated preferences. This qualitative project aimed to elucidate this phenomenon, within the context of adults' valuation of child and adolescent health states.

Methods: Six focus groups with 30 members of the UK adult public were conducted between December 2019 and February 2020 and analysed using framework analysis.

Development of a New Quality of Life Measure for Duchenne Muscular Dystrophy Using Mixed Methods: The DMD-QoL.

Objective: Based on concerns about existing patient-reported outcome measures (PROMs) for assessing quality of life (QoL) in Duchenne muscular dystrophy (DMD), we describe the mixed methods development of a new QoL PROM for use in boys and men with DMD: the DMD-QoL.

Methods: The DMD-QoL was developed in 3 stages. First, draft items were generated from 18 semistructured qualitative interviews with boys and men with DMD, analyzed using framework analysis.

The role of response domain and scale label in the quantitative interpretation of patient-reported outcome measure response options.

Purpose: Uncertainties exist in how respondents interpret response options in patient-reported outcome measures (PROMs), particularly across different domains and for different scale labels. The current study assessed how respondents quantitatively interpret common response options.

Methods: Members of the general public were recruited to this study via an online panel, stratified by age, gender, and having English as a first language.

Self-Disgust Is Associated With Loneliness, Mental Health Difficulties, and Eye-Gaze Avoidance in War Veterans With PTSD.

In the present study, we examined, for the first time, the association between self-disgust, loneliness, and mental health difficulties in war veterans diagnosed with PTSD. For this purpose, we used a mixed methods design, incorporating surveys and a novel eye-tracking paradigm, and compared the findings from the PTSD veteran group ( = 19) to those from a general population group ( = 22). Our results showed that the PTSD veteran group reported almost three times higher scores in self-disgust, and significantly higher scores in loneliness and mental health difficulties (anxiety and depression), compared to the general population.

Care Starts at Home: Emotional State and Appeals to Altruism may Reduce Demand for Overused Health Services in the UK.

Background: Overuse of unnecessary services, screening tests, and treatments is an ongoing problem for national health care systems. Overuse is at least partly driven by patient demand.

Purpose: This study examined whether altering patients' emotional state and appealing to patient altruism would reduce demand for three commonly overused UK health services.

Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments.

Duchenne muscular dystrophy (DMD) is an inherited X-linked neuromuscular disorder. A number of questionnaires are available to assess quality of life in DMD, but there are concerns about their validity. This systematic review aimed to appraise critically the content and structural validity of quality of life instruments for DMD.

Self-disgust, loneliness and mental health outcomes in older adults: An eye-tracking study.

Background: Self-disgust has been associated with loneliness and mental health difficulties in clinical and non-clinical populations, but there is limited research on the role of self-disgust in loneliness and mental health outcomes in older adults.

Methods: In Study 1 (N = 102; M age = 68.4 years, SD = 10.