Reflection on a professional advisory group to inform the use of patient empowerment tools within an implementation science research project.

Professional advisory groups, with patient and public involvement (PPI) representatives, can be used for co-production within research projects. This paper aims to document the benefits and challenges of undertaking stakeholder and participant engagement for an implementation research project within NHS (National Health Service) Wales. A patient focused research project, initiated by clinicians, on the use of patient empowerment tools within standard patient care, used a professional advisory group to identify appropriate tools to use within the research proposal.

Application of the PAPERS Grading Criteria Within a Rapid Evidence Review to Determine the Psychometric and Pragmatic Properties of Patient Empowerment Tools.

Self-management of long-term conditions requires health professionals to understand and develop capabilities that empower the population they serve. A rapid evidence review was undertaken to assess the current evidence based on the psychometric properties of patient empowerment tools. MEDLINE was searched, and data were extracted for each publication and scored using a modified Psychometric and Pragmatic Evidence Rating Scale (PAPERS) evidence rating scale.

A long way from Frome: improving connections between patients, local services and communities to reduce emergency admissions.

Background: Low socio-economic status can lead to poor patient outcomes, exacerbated by lack of integration between health and social care and there is a demand for developing new models of working.

Aim: To improve connections between patients, local services and their communities to reduce unscheduled admissions.

Design And Setting: A primary care cluster with areas of high deprivation, consisting of 11 general practices serving over 74,000 people.

Development and pilot of a community low-vision, service-specific Patient-Reported Experience Measure.

Purpose: Patient-Reported Experience Measures (PREMs) act to identify the patient's objective experience while receiving care. PREM data can provide feedback to professionals on patients' personal experience of care processes, quality of care and insight into patient expectations. This can support service improvements and person-centeredness of care.

Improving the time to ileostomy closure following an anterior resection for rectal cancer in the UK.

Aim: Delayed closure of ileostomy following an anterior resection for rectal cancer in the UK is common. The aims of this study were (i) to investigate the variation in patient pathways between hospitals, (ii) to identify the key learning points from units with the shortest time to closure and (iii) to develop guidance for a pathway to minimize delay in ileostomy closure.

Method: This was a mixed methods study.

Effects of the Argus II Retinal Prosthesis System on the Quality of Life of Patients With Ultra-Low Vision Due to Retinitis Pigmentosa: Protocol for a Single-Arm, Mixed Methods Study.

Background: Retinitis pigmentosa is an incurable, degenerative retinal condition causing progressive sight loss, significantly affecting patients' quality of life. The Argus II Retinal Prosthesis is a surgically implanted medical device that delivers electrical stimulation to the retina. It is intended to produce a form of artificial vision for blind people with severe-to-profound retinitis pigmentosa by stimulating the remaining viable retinal cells to induce visual perception.

First steps in PROMs and PREMs collection in Wales as part of the prudent and value-based healthcare agenda.

Purpose: Patients are experts in their own health and should be treated as equal partners in their care. Patient-reported outcome measures (PROMs) are an effective way of gathering patient feedback and can facilitate effectiveness and cost-effectiveness analysis to improve decision making and service improvement. The PROMs, PREMs & Effectiveness Programme was initiated in 2016 and aimed to develop an electronic platform to facilitate collection of PROMs and Patient-reported experience measures (PREMs) from secondary care patients across Wales.

Quality of life benefits from arrhythmia ablation: A longitudinal study using the C-CAP questionnaire and EQ5D.

Aims: To investigate long-term efficacy of cardiac ablation for symptomatic arrhythmia by gathering generic and arrhythmia-related quality of life data using patient-reported outcome measures before and after ablation.

Methods: Consecutive patients undergoing cardiac ablation procedures at three sites in the United Kingdom were enrolled (n = 561). Data were collected at baseline, at 8-16 weeks, and 12 months after the ablation with responses from 390 patients received at all three time points.

Requirements for the collection of electronic PROMS either "in clinic" or "at home" as part of the PROMs, PREMs and Effectiveness Programme (PPEP) in Wales: a feasibility study using a generic PROM tool.

Background: The patient-reported outcome measures (PROMs), patient-reported experience measure (PREMs) and Effectiveness Programme (PPEP) launched with the aim of supporting all National Health Service Wales (NHS Wales) organisations to collect PROMs and PREMs across a range of conditions. The aim is to collect generic and condition-specific PROMs and PREMs electronically from every secondary care patient in Wales to provide a measure that can be used to determine the clinical and cost-effectiveness of treatments and services. This study reports on the experience of the PPEP in developing an electronic platform suitable for large-scale data collection, storage, analysis and reporting and identifies the problems encountered and solutions implemented using a generic PROM survey as an example.

Cardiff cardiac ablation patient-reported outcome measure (C-CAP): validation of a new questionnaire set for patients undergoing catheter ablation for cardiac arrhythmias in the UK.

Purpose: To formally test and validate a patient-reported outcome measure (PROM) for patients with cardiac arrhythmias undergoing catheter ablation procedures in the UK [Cardiff Cardiac Ablation PROM (C-CAP)].

Methods: A multicentre, prospective, observational cohort study with consecutive patient enrolment from three UK sites was conducted. Patients were sent C-CAP questionnaires before and after an ablation procedure.

Living on a knife edge-the daily struggle of coping with symptomatic cardiac arrhythmias.

Background: In 2010 a retrospective audit was undertaken to assess the viability of using PROMs in patients with symptomatic cardiac arrhythmias having undergone percutaneous arrhythmia ablation. A response rate of 74 % was achieved, with finding suggesting that arrhythmia patients reported a significant impact on their work, social and family life.

Aims: To conduct a qualitative cross sectional survey to understand patients' perspectives of how cardiac arrhythmias affect their daily lives, as part of a program to develop a Patient Reported Outcome Measure (PROM).

Establishing content validity in a novel patient reported outcome measure for cardiac arrhythmia ablation patients.

Aim: Preliminary content validity testing of a UK Patient Reported Outcome Measure (PROM) for use in cardiac arrhythmia patients undergoing ablation treatment.

Methods: Twenty five patients diagnosed with symptomatic cardiac arrhythmias participated in qualitative interviews to obtain their perspective of a draft PROM. As part of the process to establish preliminary content validity, patients were asked to complete the questionnaires and to identify missing and redundant items within the PROM, while also reviewing the instructions and formatting.

Patient reported outcome measures for cardiac ablation procedures: a multicentre pilot to develop a new questionnaire.

Aim: To assess the feasibility of administering Patient Reported Outcomes Measures (PROMs) in patients treated with ablation for cardiac arrhythmias, and to conduct the first stage of development and testing of a new PROM tool.

Methods And Results: A new tool was developed by a multidisciplinary team and tested alongside an adaptation of the patient perception of arrhythmia questionnaire (PPAQ) and EQ-5D-5L in a multicentre retrospective audit involving 791 consecutive cardiac arrhythmia patients treated with catheter ablation at three UK centres over 13 months. Data were recorded in the National Cardiac Rhythm Management Database, part of the National Institute for Cardiovascular Outcomes Research.