Patient-Reported Outcomes in Integrated Care: A Frontier of Opportunities and Challenges.

Effective care integration requires the right information, at the right time, with care and support delivered in the right environment. Patient-reported outcome measures [PROMs] offer a mechanism to support collaborative integrated care to help people understand their conditions better, live well, and remain independent. Through the lens of the delivery of integrated care in England, we consider the opportunities and challenges associated with the use of PROMs across health and care.

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.

Promoting Disability Inclusion Through an Expanded Conceptual Framework of the Learning Environment.

The inclusion of people with disabilities in medicine is imperative to ensuring a diverse, culturally adept physician workforce. Despite increasing representation in U.S.

Measure selection for an electronic patient-reported outcome (ePRO) system for CAR T-cell therapy patients: a modified Delphi consensus study.

Background: Chimeric Antigen Receptor (CAR) T-cell therapies are effective for treating haematological cancers but carry risks of toxicity and substantial symptom burden. Patient-reported outcomes (PROs) could significantly enhance clinical management for patients undergoing these treatments. However, guidance on selection of PRO measures for monitoring adverse event and quality of life after CAR T-cell therapy is limited.

Age-Related Hearing Loss: Evidence-Based Strategies for Early Detection and Management.

Age-related hearing loss (ARHL) is common in older adults and has been linked to significant health and social challenges. These challenges include cognitive decline, depression, falls, and overall decreased quality of life. Despite its high prevalence, ARHL remains underdiagnosed and undertreated, partly due to its gradual onset, stigma, and lack of standardized screening and management protocols.

Creating Clarity Amid the Operating Room Clamor: A Mixed Methods Analysis of Noise-Related Barriers and Facilitators to Effective Communication.

Background: The operating room is one of the noisiest healthcare environments, creating critical challenges for patient safety, team efficiency, and surgical outcomes. Operating room nurses, essential for patient care and team coordination, face unique risks from noise exposure and impaired communication, yet their challenges remain underexplored.

Objective: To assess hearing challenges and communication barriers in operating room teams from nurses' perspectives, with implications for patient safety and interventions.

Advancing Educational Equity for Children with Hearing Loss: Celebrating the 50 Anniversary of the Individuals with Disability Education Act (IDEA).

The Individuals with Disabilities Education Act has been pivotal in securing necessary accommodations, specialized instruction, and assistive technologies, thereby promoting educational equity. Despite these advances, children with hearing differences continue to face significant barriers in early identification, intervention, and inclusion, necessitating the continuous advocacy and involvement of interdisciplinary professionals in educational and healthcare settings. Nurses are instrumental in bridging healthcare and education, facilitating early detection of hearing differences through newborn screenings and routine school assessments.

Expanding Access to Hearing Healthcare for Adults: How Interprofessional Collaboration Can Promote Care Equity From Clinics to Communities.

Age-related hearing loss (ARHL) is a prevalent yet often overlooked public health challenge that requires interprofessional teamwork and advocacy to implement evidence-based interventions. ARHL impacts quality of life, cognitive function, and social well-being, yet access to hearing care remains limited due partly due to socioeconomic disparities, stigma, and gaps in interprofessional collaboration. This paper explores strategies to expand equitable access to hearing healthcare through interprofessional collaboration, policy advocacy, and community outreach.

"I always feel like I'm the first deaf person they have ever met:" Deaf Awareness, Accessibility and Communication in the United Kingdom's National Health Service (NHS): How can we do better?

Background: Barriers to communication significantly reduce access to health services for people with deafness or hearing loss (PDHL). These barriers contribute to reduced healthcare-seeking behaviour, poorer access to health information, and adverse health outcomes. In response, a multidisciplinary working group of patients, clinicians, researchers, and charity representatives was established to investigate accessibility, communication, and deaf awareness within the United Kingdom's (UK) National Health Service (NHS).

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.

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.

A qualitative reflexive thematic analysis of innovation and regulation in hearing health care.

Background: The hearing health sector is an example of a health sector that is experiencing a period of rapid innovation driven by digital technologies. These innovations will impact the types of interventions and services available to support the communication of deaf and hard-of-hearing individuals. This study explored the perceptions of informed participants on the topic of innovation and regulation within hearing healthcare in Australia and the United Kingdom (UK).

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.

Patient-reported outcomes in integrated health and social care: A scoping review.

Background: Patient-reported outcomes (PROs) have potential to support integrated health and social care research and practice; however, evidence of their utilisation has not been synthesised.

Objective: To identify PRO measures utilised in integrated care and adult social care research and practice and to chart the evidence of implementation factors influencing their uptake.

Design: Scoping review of peer-reviewed literature.

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.

Core outcome measurement set for research and clinical practice in post-COVID-19 condition (long COVID) in children and young people: an international Delphi consensus study "PC-COS Children".

The coronavirus disease 2019 (COVID-19) pandemic substantially impacted different age groups, with children and young people not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in children and young people with post-COVID-19 condition.

Development and usability testing of an electronic patient-reported outcome (ePRO) solution for patients with inflammatory diseases in an Advanced Therapy Medicinal Product (ATMP) basket trial.

Background: Electronic patient-reported outcome (ePRO) systems are increasingly used in clinical trials to provide evidence of efficacy and tolerability of treatment from the patient perspective. The aim of this study is twofold: (1) to describe how we developed an electronic platform for patients to report their symptoms, and (2) to develop and undertake usability testing of an ePRO solution for use in a study of cell therapy seeking to provide early evidence of efficacy and tolerability of treatment and test the feasibility of the system for use in later phase studies.

Methods: An ePRO system was designed to be used in a single arm, multi-centre, phase II basket trial investigating the safety and activity of the use of ORBCEL-C™ in the treatment of patients with inflammatory conditions.

Protocol for a living evidence synthesis on variants of concern and COVID-19 vaccine effectiveness.

Background: It is evident that COVID-19 will remain a public health concern in the coming years, largely driven by variants of concern (VOC). It is critical to continuously monitor vaccine effectiveness as new variants emerge and new vaccines and/or boosters are developed. Systematic surveillance of the scientific evidence base is necessary to inform public health action and identify key uncertainties.

Considerations for patient and public involvement and engagement in health research.

Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs. Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited.