Development of Patient Reported Outcome Measures (PROMs) in Addiction Science

Professor Joanne Neale, King’s College London
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It was great to be back at NDARC and to have the opportunity of presenting some of our on-going work on Patient Reported Outcome Measures (or PROMs). I began my presentation somewhat inelegantly by spilling a glass of water over the table, which left a pool of liquid flowing towards the PC monitor. Many thanks to the very kind person who rescued me with paper towels, and to the audience for their patience whilst we mopped up.  I blame the jet lag…

Eventually, I was ready to begin. A PROM is a short self-completed questionnaire or rating scale that assesses health status or health-related quality of life, focusing on the patient (service user or client) perspective. PROMs can be generic (e.g. the SF-36) or condition specific (e.g. the Beck Depression Inventory). They are widely used and accepted across a range of health fields, but less commonly used in the addictions.

Patients, clinicians and service providers often have different views on what is a good outcome from treatment. Since PROMs should focus on the patient perspective, developing a PROM should involve significant consultation with, and involvement of, members of the patient or service user group who will go on to use the measure. This is to ensure that the measure, once developed, has good face and content validity. Once developed, a PROM needs to be subject to rigorous psychometric testing to ensure that it is valid.

In the presentation, I talked about two new PROMs that we have been developing at the National Addiction Centre, London. The first is a measure of addiction recovery (funded by the Biomedical Research Centre for Mental Health at King’s College London) and the second is a measure of sleep quality (funded by the charity Action on Addiction). Both PROMs have involved iterative rounds of qualitative interviews and focus groups with service users to identify and refine candidate questions. We have then asked larger numbers of individuals to complete the new measures so we can conduct quantitative analyses comprisingrating scale evaluation, assessment of psychometric properties (reliability, validity), factorial structure, and differential item functioning.

Our work is being conducted by multidisciplinary teams of qualitative and quantitative researchers, with significant support from our Addiction Service User Research Group (SURG): http://www.kcl.ac.uk/ioppn/depts/addictions/research/SURG/index.aspx Once finalised, we hope that we will have two new robust, but easy-to-complete measures that are acceptable to a wide range of stakeholders and suitable for a range of purposes, including client self-monitoring, therapeutic use, research, service audit, and even  commissioning. In the future, we wish to take this work forward through international adaptation and validation, and by making the measures widely available online and via apps. Below are some references to our work. Meantime, I’m pleased to report that I escaped without having to pay for the flooded monitor….

This blog is based on Professor Joanne Neale's presentation at the NDARC Seminar on Thursday, 24 March 2016.

References

  • Neale, J., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Strang, J. Tompkins, C., Wheeler, C. & Wykes, T. (2014) ‘How should we measure addiction recovery? Analysis of service provider perspectives using online Delphi groups’, Drugs: education, prevention and policy 21, 310-323.
  • Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T., & Strang, J. (2015) ‘”You’re all going to hate the word ‘recovery’ by the end of this”: service users’ views of measuring addiction recovery’, Drugs: education, prevention and policy 22, 26-34.
  • Neale, J. & Strang, J. (2015) ‘Blending qualitative and quantitative research methods to optimise patient reported outcome measures (PROMS)’, Editorial, Addiction 110, 1215-1216.
  • Neale, J. & Strang, J. (2015) ‘Philosophical ruminations on measurement: methodological orientations of patient reported outcome measures (PROMS)’, Editorial, Journal of Mental Health 24, 123-25.
  • Neale, J., Panebianco, D., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Wykes, T., & Strang, J. (2016) ‘Emerging consensus on measuring addiction recovery: findings from a multi-stakeholder consultation exercise’. Drugs: education, prevention and policy 23, 31-40. Open Access: http://www.tandfonline.com/doi/pdf/10.3109/09687637.2015.1100587