Assessing the content validity of patient reported outcome measure item pool for rheumatoid arthritis disease activity using cognitive interviews.

Objectives: Using Rasch measurement theory, an item pool of 12 questions has been identified, covering tenderness and swelling, disease activity, pain, physical functioning and stiffness for assessing the construct of RA disease activity. This study aimed to assess the content validity of this item pool using cognitive interviews.

Methods: Participants were randomly sampled across varying age, sex and education level categories from respondents to a survey containing RA disease activity Patient Reported Outcome Measures.

"Adrift From the World": Exploring the Lived Experiences of Individuals Affected by an Inherited Optic Neuropathy in the United Kingdom-A Qualitative Study.

Objectives: Little is understood about the lived experiences of individuals affected by inherited optic neuropathies (IONs) in the United Kingdom. The aim of this study was to understand how autosomal dominant optic atrophy (DOA) and Leber hereditary optic neuropathy, the 2 more commonly encountered IONs, impact affected individuals and the factors contributing to their vision-related quality of life (VRQoL).

Methods: Semistructured qualitative interviews were conducted with 20 individuals with a genetic diagnosis of DOA (10 participants) or Leber hereditary optic neuropathy (10 participants) and affected by vision loss.

Development, Rasch analysis and validation of the kidney symptom burden questionnaire (KSB-Q).

Background: Increasingly, patient-reported outcome measures (PROMs) are used to monitor chronic kidney disease (CKD) symptoms in routine clinical practice. However, such symptom measurement currently requires completion of multiple, often lengthy, PROMs, which may lead to questionnaire fatigue, lower levels of completion, and missing data. Moreover, many CKD-specific PROMs lack evidence of important measurement properties and few were developed using contemporary psychometric methods.

Patient Reported Outcome Measures for Rheumatoid Arthritis Disease Activity: Rasch measurement theory to identify items and domains.

Objectives: Disease activity (DA) monitoring is a standard of care in RA. There is demand for achieving this through patient-reported outcome measures (PROMs). The aim of this study was to determine which items could be used to measure the construct of RA DA, by analysing legacy PROMs, using Rasch measurement theory (RMT) analyses.

Health-Related Quality of Life in Long COVID: Mapping the Condition-Specific C19-YRSm Measure Onto the EQ-5D-5L.

Background: Long COVID (LC) is a clinical syndrome with persistent, fluctuating symptoms subsequent to COVID-19 infection. LC has significant detrimental effects on health-related quality of life (HRQoL), activities of daily living (ADL), and work productivity. Condition-specific patient-reported outcome measures (PROMs), such as the modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) do not provide the health utility data required for cost-utility analyses of LC interventions.

German translation, cultural adaptation for Austria, and validation of the Neurological Sleep Index-Multiple Sclerosis.

Study Objectives: To translate, culturally adapt, and validate the Neurological Sleep Index-Multiple Sclerosis (NSI-MS) for use in Austrian German-speaking populations with multiple sclerosis.

Methods: Following established guidelines, the NSI-MS diurnal sleepiness, nonrestorative nocturnal sleep, and fragmented nocturnal sleep scales underwent forward-backward translation, with content and face validity, and cultural adaptation to Austria established. Construct validity was evaluated using Rasch analysis.

Development of a quality of life measure for left ventricular assist device recipients using a mixed methods approach.

Background: Left ventricular assist device (LVAD) recipients report symptom improvement but find adjusting to life with the LVAD challenging. These challenges are unique, and existing patient-reported outcome measures (PROMs) do not reflect their experiences. This study aimed to develop a culturally relevant quality of life PROM for use with LVAD recipients in future research, design evolutions and clinical practice.

Psychometric analysis of the modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) in a prospective multicentre study.

Background: Long COVID (LC) is a novel multisystem clinical syndrome affecting millions of individuals worldwide. The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) is a condition-specific patient-reported outcome measure designed for assessment and monitoring of people with LC.

Objectives: To evaluate the psychometric properties of the C19-YRSm in a prospective sample of people with LC.

Psychometric Validity of the Visual Function Index in Leber Hereditary Optic Neuropathy.

Purpose: The purpose of this study was to determine the psychometric validity of the Visual Function Index (VF-14) for use by patients with Leber hereditary optic neuropathy (LHON).

Methods: Rasch analysis was conducted in two stages using data for 196 individuals (74.5% male) carrying one of the three primary LHON mutations and affected by vision loss.

Psychometric analysis of the Glasgow Coma Scale and its sub-scale scores in a national retrospective cohort of patients with traumatic injuries.

Objectives: To determine the psychometric validity, using Rasch analysis, of summing the three constituent parts of the Glasgow Coma Scale (GCS).

Design: National (registry-based) retrospective study.

Setting: England and Wales.

The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome.

Background: The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in Post-COVID-19 syndrome (PCS). The 22-item scale's subscales (scores) are symptom severity (0-100), functional disability (0-50), additional symptoms (0-60), and overall health (0-10).

Objectives: This study aimed to test the scale's psychometric properties using Rasch analysis and modify the scale based on analysis findings, emerging information on essential PCS symptoms, and feedback from a working group of patients and professionals.

LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS (LOCOMOTION): protocol for a mixed-methods study in the UK.

Introduction: Long COVID, a new condition whose origins and natural history are not yet fully established, currently affects 1.5 million people in the UK. Most do not have access to specialist long COVID services.

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis.

Background: The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1-5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant.

Patient Reported Outcome Measures for Rheumatoid Arthritis Disease Activity: a systematic review following COSMIN guidelines.

Background: The current standard of care in rheumatoid arthritis (RA) requires regular assessment of disease activity (DA). All standard RA DA measurement instruments require joint counts to be undertaken by a healthcare professional with/without a blood test. Few healthcare providers have the capacity to assess patients as frequently as stipulated by guidelines.

Development and Validation of Physical Activity-Specific Rumination Scale for Children Through UK Children's Voice.

Many physical activity (PA) interventions implemented to tackle the child obesity epidemic have shown limited effectiveness, possibly due to a lack of consideration of potential stress that accompanies behavior adaptation and the automatic perseverative cognition that exacerbates the stress (namely rumination). : The main aim of this paper is to develop and validate the PA-specific Rumination Scale for Children (PARSC) that assesses children's tendencies to engage in repeated negative thoughts about PA (Study 2). Items in the scale were derived from qualitative information about factors that inherently demotivates PA participation (intrinsic barriers) through the lived experience of UK children (Study 1).

Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies.

Purpose: To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored.

Methods: Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies).

The COVID-19 Yorkshire Rehabilitation Scale (C19-YRS): Application and psychometric analysis in a post-COVID-19 syndrome cohort.

As our understanding of the nature and prevalence of post-coronavirus disease 2019 (COVID-19) syndrome (PCS) is increasing, a measure of the impact of COVID-19 could provide valuable insights into patients' perceptions in clinical trials and epidemiological studies as well as routine clinical practice. To evaluate the clinical usefulness and psychometric properties of the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS) in patients with PCS, a prospective, observational study of 187 consecutive patients attending a post-COVID-19 rehabilitation clinic was conducted. The C19-YRS was used to record patients' symptoms, functioning, and disability.

UK General Population Utility Values for the SIDECAR-D Instrument Measuring the Impact of Caring for People With Dementia.

Objectives: Dementia affects many people, with numbers expected to grow as populations age. Many people with dementia receive informal/family/unpaid care, for example, from a spouse or child, which may affect carer quality of life. Measuring the effectiveness of health/social care interventions for carers requires a value measure of the quality-of-life impact of caring.