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

Abstract

BackgroundThe 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.MethodsThe generic PROM survey is available in English and Welsh and consists of a consent section and three components: the EQ-5D-5L tool, the Work Productivity and Activity Impairment (WPAI) tool and a number of “about you” questions. The “about you” questions are designed to assess factors which may affect patient health and outcomes such as information on height, weight, smoking history, exercise levels and alcohol consumption. A dedicated PROM database was built, and links between the e-PROM platform and other key clinical databases within NHS Wales were developed.ResultsPilot testing of the unvalidated sections of the generic electronic PROM found that most of the questions were well understood and easy to answer: however, feedback suggested some improvements and changes were required, specifically around questions relating to alcohol and exercise.Electronic PROM collection has been initiated in six of the seven health boards in Wales and at-home collection initiated in three health boards. More than 9300 patients have completed a PROM survey. Early results from one Health Board show that patients took approximately 10 min to complete the questionnaire with most patients answering an average of 94.7% of the questions.ConclusionsSuccessful implementation of a PROM collection programme is dependent on a number of factors including close collaboration with clinicians, analysts, IT specialists and patients to ensure that any electronic system of PROM collection is fit for purpose and user friendly both for patients and clinicians.

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

“…Similar to other literature, this review highlighted the importance of investing time in designing the PROMs process] and tailoring it to the specific context by considering the needs and opinions of patients and clinicians [ 40 ]. This review identified that it was useful to involve clinicians in designing the PROMs process and this has been identified in other studies [ 41 ]. From both this review and wider literature it is evident that organisations not only need to design how to administer PROMs, but also consider how clinicians should interpret and act on the data generated].…”

Development and feasibility of the use of an assessment tool measuring treatment efficacy in patients with trimethylaminuria: A mixed methods study

“…23 In-clinic or at-home completion could take place prior to a consultation to help inform this patientclinician decision-making process, allowing tailoring of treatment plans to match an individual's response and preference and providing a framework to identify treatment outcomes which otherwise could go unrecognised. 11 The tool as currently designed calls for assessment at a moment in time 24 which may be coterminous with a medical outpatient review. It is recognised that measurement over a period of time is recommended in line with the measurement of constructs such as psychological well-being.…”

“…In these circumstances, an approach which focuses on patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs) may be more appropriate to inform future TMAU treatment outcomes pre‐ and post‐intervention . PROMs and PREMs are reported to narrow the gap between the clinician's and patient's view of clinical reality as they participate in the design of care delivery themselves, a process which is also known as co‐production and sees patients and clinical staff as equal partners to optimise the best outcome for each individual patient's journey …”

“…10 PROMs and PREMs are reported to narrow the gap between the clinician's and patient's view of clinical reality as they participate in the design of care delivery themselves, a process which is also known as co-production and sees patients and clinical staff as equal partners to optimise the best outcome for each individual patient's journey. 11 In this context, the aim of this study was to develop an assessment tool to provide a quantitative measure of treatment efficacy in patients diagnosed with TMAU before and after treatment and assess its acceptability (feasibility of use and face and content validity) to people living with TMAU.…”

Implementing successful systematic Patient Reported Outcome and Experience Measures (PROMs and PREMs) in robotic oncological surgery—The role of physicians

“…Similarly to PROMs, there has been an increasing interest in the collection of Patient Reported Experience Measures (PREMs) . PREMs are surveys designed to capture patient experience of care and are used as a means of engaging patients in their care pathway, measuring the quality of services provided, informing improvement actions, and evaluating performance of services delivered.…”