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.

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.

SMOOTH protocol: A pilot randomised prospective intra-patient single-blinded observational study for examining the mechanistic basis of ablative fractional carbon dioxide laser therapy in treating hypertrophic scarring.

Background: Burn injuries are the fourth most common type of trauma and are associated with substantial morbidity and mortality. The impact of burn injury is clinically significant as burn injuries often give rise to exuberant scarring. Hypertrophic scarring (HTS) is a particular concern as up to 70% of burns patients develop HTS.

Identifying patient-valued outcomes for use in early phase trials of ocular surface disease interventions.

Background: Patient-reported outcomes (PROs) can be used to evaluate the impact of dry eye symptoms (DES) on daily life. Early-phase clinical trials provide an opportunity to evaluate PRO strategies. Existing measures identified through systematic review omitted important concepts that mattered to patients.

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.

A systematic review assessing the quality of patient reported outcomes measures in dry eye diseases.

Background: Patient-reported outcome measures (PROMs) can provide valuable insights on the impact of a disease or treatment on a patient's health-related quality of life. In ophthalmology, particularly in dry eye disease (DED) and ocular surface disease (OSD), it is unclear whether the available PROMs were developed using comprehensive guidelines. To address this, we evaluated the methodological quality of studies assessing the psychometric properties of PROMs in DED and OSD [PROSPERO registration number CRD42019142328].

'Give Us The Tools!': development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension.

Objectives: (a) To adapt the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-patient-reported outcome (PRO) Extension guidance to a user-friendly format for patient partners and (b) to codesign a web-based tool to support the dissemination and uptake of the SPIRIT-PRO Extension by patient partners.

Design: A 1-day patient and public involvement session.

Participants: Seven patient partners.

The impact of patient-reported outcome data from clinical trials: perspectives from international stakeholders.

Background: Patient-reported outcomes (PROs) are increasingly collected in clinical trials as they provide unique information on the physical, functional and psychological impact of a treatment from the patient's perspective. Recent research suggests that PRO trial data have the potential to inform shared decision-making, support pharmaceutical labelling claims and influence healthcare policy and practice. However, there remains limited evidence regarding the actual impact associated with PRO trial data and how to maximise PRO impact to benefit patients and society.

Care providers' and patients' attitudes toward using electronic-patient reported outcomes to support patients with traumatic brain injury: a qualitative study (PRiORiTy).

To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients' and their families' quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression.

The impact of patient-reported outcome (PRO) data from clinical trials: a systematic review and critical analysis.

Background: Patient-reported outcomes (PROs) are commonly collected in clinical trials and should provide impactful evidence on the effect of interventions on patient symptoms and quality of life. However, it is unclear how PRO impact is currently realised in practice. In addition, the different types of impact associated with PRO trial results, their barriers and facilitators, and appropriate impact metrics are not well defined.

Early Hour, Golden Hour: an Exploration of Slovenian Older People's Meaningful Occupations.

People are occupational beings and enabling older people to engage in meaningful occupations contributes to their health and well-being. Experiences of engagement and meaning in an occupation may differ in different socio-cultural contexts. The aim of this study was to explore Slovenian older people's individual experiences of engagement in occupation, with a particular emphasis on their meaningful occupations.

Patient and Clinician Perspectives on Electronic Patient-Reported Outcome Measures in the Management of Advanced CKD: A Qualitative Study.

Rationale & Objective: Chronic kidney disease (CKD) can substantially affect patients' health-related quality of life. Electronic patient-reported outcome measures (ePROMs) may capture symptoms and health-related quality of life and assist in the management of CKD. This study explored patient and clinician views on the use of a renal ePROM system.

Electronic patient reported outcomes to support care of patients with traumatic brain injury: PRiORiTy study qualitative protocol.

Introduction: Traumatic brain injury (TBI) represents a major health and socioeconomic problem internationally. The expansive nature of injuries results in a heterogeneous population. The degree and type of long-term impacts following TBI and improvement following injury are highly variable.

An introduction to patient-reported outcome measures (PROMs) in trauma.

Increased survival rates from traumatic injury have resulted in more people living with disability and reduced quality of life. To understand how peoples' quality of life is affected following a traumatic injury and the effects of that injury on their health and well-being, it is important to capture patients' perspectives of their own health. Patient-reported outcome measures (PROMs) are questionnaires, completed by patients, which can be used to measure the symptom burden associated with trauma and its treatment, and impact on quality of life.

Determinants of Tenancy Sustainment Following Homelessness: A Systematic Review.

Background: Tenancy sustainment-maintenance of a tenancy to avoid a premature end of tenure-is fundamental to prevention of homelessness. Understanding what enables a successful tenancy is essential in informing interventions designed to support people in leaving homelessness.

Objectives: To conduct a systematic review identifying determinants associated with tenancy sustainment following homelessness.

Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review.

Background: Primary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients.

Patient reported outcome measures in rare diseases: a narrative review.

Background: Rare diseases can lead to a significant reduction in quality of life for patients and their families. Ensuring the patients voice is central to clinical decision making is key to delivering, evaluating and understanding the efficacy of therapeutic interventions. Patient reported outcome measures (PROMs) are used to capture the patient's views about their health status and facilitate our understanding of the impact of these diseases and their treatments on patient's quality of life and symptoms.

Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension.

Importance: Patient-reported outcome (PRO) data from clinical trials can provide valuable evidence to inform shared decision making, labeling claims, clinical guidelines, and health policy; however, the PRO content of clinical trial protocols is often suboptimal. The SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) statement was published in 2013 and aims to improve the completeness of trial protocols by providing evidence-based recommendations for the minimum set of items to be addressed, but it does not provide PRO-specific guidance.

Objective: To develop international, consensus-based, PRO-specific protocol guidance (the SPIRIT-PRO Extension).

Using Patient-Reported Outcome Measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney disease (PRO-trACK project): a mixed-methods project protocol.

Introduction: Advanced chronic kidney disease (CKD) has a major effect on the quality of life and health status of patients and requires accurate and responsive management. The use of electronic patient-reported outcome measures (ePROMs) could assist patients with advanced pre-dialysis CKD, and the clinicians responsible for their care, by identifying important changes in symptom burden in real time. We report the protocol for 'Using Patient-Reported Outcome measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney Disease' (PRO-trACK) project, which will explore the feasibility and validity of an ePROM system for use in patients with advanced CKD.

Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review.

Background: Patient-reported outcome measures (PROMs) can provide valuable information which may assist with the care of patients with chronic kidney disease (CKD). However, given the large number of measures available, it is unclear which PROMs are suitable for use in research or clinical practice. To address this we comprehensively evaluated studies that assessed the measurement properties of PROMs in adults with CKD.

Exploring the lived experience of homelessness from an occupational perspective.

Working in homelessness is a growing area of practice for occupational therapists, however, there is limited literature on the lived experiences of homelessness and occupational engagement Study aim: To explore the lived experience of homeless men in relation to how they engaged in day-to-day occupations when sleeping rough or hostel dwelling Methods: Data were gathered from five men residing in a homeless hostel in the UK. Data collection included semi-structured interviews and photographic diaries. Data were analyzed using Interpretative Phenomenological Analysis Results: Participants described their experiences of occupational engagement whilst sleeping on the streets which included engaging in survival occupations, the significance of apparently ordinary occupations and moving beyond survival occupations.

"Holding on to What I Do": Experiences of Older Slovenians Moving into a Care Home.

Purpose Of The Study: This qualitative study explored Slovenian older people's experiences of transition into a care home and the influence on their everyday engagement in meaningful occupations.

Design And Methods: A longitudinal, phenomenological approach was employed. Semistructured interviews with six Slovenian older adults were conducted at three time intervals: before the relocation, 1 month after, and 6 months after the relocation into a care home.

Stakeholders' Perceptions About a Newly Established Dental School with a Problem-Based, Student-Led, Patient-Centered Curriculum: A Qualitative Study.

The aim of this study was to explore the perceptions of stakeholders regarding a newly established dental school with a problem-based, student-led, patient-centered curriculum in a community setting. Qualitative methods using 16 semistructured interviews and two focus groups were used to engage a range of stakeholders from students to faculty members to practitioners. Purposive sampling was employed with participants contacted through professional channels.