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
Susan O'Connell, Robert Palmer, Kathleen Withers, Neeleem Saha, Sarah Puntoni, Grace Carolan-Rees, PROMs, PREMs and Effectiveness Programme, Susan O'Connell, Robert Palmer, Kathleen Withers, Neeleem Saha, Sarah Puntoni, Grace Carolan-Rees, PROMs, PREMs and Effectiveness Programme
Abstract
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.
Methods: The 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.
Results: Pilot 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.
Conclusions: Successful 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.
Keywords: E-PROMs; Electronic PROMs; PROMs; Patient experience; Patient involvement; Patient-reported outcome measures.
Conflict of interest statement
Ethical approval was not required for this study. Information governance teams have been involved in the processes relating to consent and data-sharing agreements, and patient consent will be obtained for research purposes.Consent to publish was obtained following review by key PPEP board members.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Figures
References
- Alyward M, Phillips C, Howson H. Simply prudent healthcare—achieving better care and value for money in Wales—discussion paper. 2013. Available at: . Accessed 27 Oct 2017.
- Realpe A, Wallace L. What is Co-production? The Health Foundation. 2010. . Accessed 04 May 2018.
- 1000 Lives Plus (Tools for Improvement). Co-producing services, co-creating health. 2013. . Accessed 26 Feb 2018.
- Basser M. Benefits case study ‘patient reported outcomes measures (PROMs)’ outputs: improving health outcomes for patients undergoing knee replacement, hip replacement, varicose vein and groin hernia treatments. 2015. Available at: . Accessed 26 Feb 2018.
- Coons SJ, Gwaltney CJ, Hays RD, et al. Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO good research practices task force report. Value Health. 2009;12(4):419–429. doi: 10.1111/j.1524-4733.2008.00470.x.
- Reilly MC, Zbrozek AS, Dukes EM. The validity and reproducibility of a work productivity and activity impairment instrument. PharmacoEconomics. 1993;4(5):353–365. doi: 10.2165/00019053-199304050-00006.
- The EuroQol Group EuroQol—a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208. doi: 10.1016/0168-8510(90)90421-9.
- Wild D, Grove A, Martin M, et al. Principles of good practice for the translation and cultural adaptation process for patient reported outcome (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health. 2005;8(2):94–104. doi: 10.1111/j.1524-4733.2005.04054.x.
- PROMs Wales. 2017. . Accessed 27 Nov 2017.
- Gwaltney C, Shields A, Shiffman S, et al. Equivalence of electronic and paper and pencil administration of patient reported outcome measures: a meta-analytic review. Value Health. 2008;11(2):322–333. doi: 10.1111/j.1524-4733.2007.00231.x.
- Muehlhausen W, Doll H, Quadri N, et al. Equivalence of electronic and paper administration of patient-reported outcome measures: a systematic review and meta-analysis of studies conducted between 2007 and 2013. Health Qual Life Outcomes. 2015;13:167–187. doi: 10.1186/s12955-015-0362-x.
Source: PubMed