Systematic reviews of patient-reported outcome measures (PROMs): table templates for effective communication.

Purpose: Systematic reviews of outcome measurement instruments (OMIs) are an important tool to guide the selection of OMIs for research and clinical practice. However, presenting the large amount of complex data pertaining both to the quality of each study (i.e.

Patient and Caregiver Experiences of CAR T Cell Therapy for Blood Cancer in the UK: A Qualitative Study.

Background: Advanced cell therapies, including chimeric antigen receptor T cell (CAR T cell) therapies, offer novel opportunities for the treatment of advanced blood cancers such as lymphoma and leukaemia. However, as these therapies are relatively new, there is limited information on the experiences of patients and informal caregivers of the treatment which may influence the uptake of these therapies. The aim of this qualitative study was to explore their experiences to facilitate the identification of specific issues that should be addressed to positively impact patient outcomes and experiences of care.

The importance of patient-reported outcomes: A call for their integration in the routine care of patients with multiple sclerosis.

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. Common symptoms include physical disability, cognitive impairment, spasticity, fatigue, bowel/bladder dysfunction and depression. The use of patient-reported outcomes (PROs) can be used to systematically assess the burden of the disease and its impact on treatment and health-related quality of life.

Well-being and coping: Key aspects of unmet need of people living with glioma.

Background: The challenges and needs of people with brain tumors are complex and unique, particularly-but not limited to-the neurocognitive impacts they experience. These effects are subsequently impactful on their primary caregivers. Evidence suggests people with glioma and their caregivers experience a range of unmet needs in the clinical care setting.

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.

Mixed methods study of views and experience of non-hospitalised individuals with long COVID of using pacing interventions.

Long COVID is highly prevalent and debilitating, with key symptoms including fatigue, breathlessness, and brain fog. Pacing is an approach to energy conservation used to help people with chronic conditions like ME/CFS manage the impact of their condition, and could be a useful strategy for people with Long COVID. The aim of this study was to explore the views and experiences of non-hospitalised adults with Long COVID of pacing as an intervention.

Expert consensus on implementing patient-reported outcomes in telehealth: findings from an international Delphi study.

Background: Using Patient Reported Outcomes (PROs) in clinical care can reduce healthcare service utilization by improving the quality of care. Telehealth, defined by WHO, as the use of "telecommunications and virtual technology to deliver healthcare outside of traditional healthcare facilities", can facilitate a dynamic dialogue between patients and healthcare providers for timely interventions. With the increased use of telehealth facilitated by the infrastructure development during the COVID-19 pandemic, there is an opportunity to utilize telehealth for PRO implementation and a need for guidelines for using PROs via telehealth.

Implementation of patient and public involvement and engagement (PPIE) for the therapies for long COVID in non-hospitalised individuals (TLC) project.

Background: Patients, their family members and caregivers have firsthand experiences of living with or supporting someone living with a disease or medical condition. This knowledge by experience cannot be replaced by the knowledge acquired by clinicians, researchers, or other professionals through study and/or work. The Therapies for Long COVID in non-hospitalised individuals (TLC) research project was funded in the UK by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation to investigate the impact of long COVID on affected individuals.

Recommendations to promote equity, diversity and inclusion in decentralized clinical trials.

Decentralized clinical trials involving the use of digital tools to facilitate remote research are gaining momentum. Rapid advancements in digital technologies have supported the adoption of these trials. These innovations facilitate virtual interactions between clinical trial teams and participants by making it easier to collect, transfer and store electronic data.

Key considerations for digital decentralised clinical trials from a feasibility study assessing pacing interventions for long COVID.

Post COVID-19 condition or long COVID is highly prevalent and often debilitating, with key symptoms including fatigue, breathlessness, and brain fog. There is currently a lack of evidence-based treatments for this highly complex syndrome. There is a need for clinical trial platforms to rapidly evaluate nonpharmacological treatments to support affected individuals with symptom management.

Acceptability and timing considerations when administering patient-reported outcome measures (PROMs) among people with chronic health conditions who are culturally and linguistically diverse (CALD): a qualitative study protocol.

Introduction: Patient-reported outcome measures (PROMs) are validated and standardised questionnaires that capture patients' own reports of their symptoms, functioning and well-being. PROMs can facilitate communication between patients and clinicians, reduce symptom burden, enhance quality of life and inform health service re-design. We aim to determine the acceptability of PROMs and the preferred timing of PROM completion in New South Wales (NSW) at the point of care, facilitated by the Health Outcomes and Patient Experiences (HOPE) platform.

Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024.

Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024.

Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024.

Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

Methodological quality of 100 recent systematic reviews of health-related outcome measurement instruments: an overview of reviews.

Purpose: Systematic reviews evaluating and comparing the measurement properties of outcome measurement instruments (OMIs) play an important role in OMI selection. Earlier overviews of review quality (2007, 2014) evidenced substantial concerns with regards to alignment to scientific standards. This overview aimed to investigate whether the quality of recent systematic reviews of OMIs lives up to the current scientific standards.

Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024.

Background And Objective: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

Recommendations to address respondent burden associated with patient-reported outcome assessment.

Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective and to inform regulatory decisions and health policy. The use of PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with potential impact on the completeness and quality of the data for decision-making.