Patients’ views are essential to achieving high-quality health care. Our PROMs research is helping to improve patient care by evaluating the performance of health care providers and guiding NHS reforms.
Current staff conducting this important work are Nick Black, Sarah Smith, Joljin Hendriks, Min Hae Park, Esther Kwong, Jan van der Meulen, Andrew Hutchings, Belene Podmore and Eva Protopapa.
Over 40 academic papers have stemmed from our PROMs research, some of which included the development of new PROM questionnaires.
Patients’ views are essential to achieving high-quality care. Their perspective complements that of clinicians, providing unique insights into perceptions of their health status and health-related quality of life. It is therefore important to find ways of involving patients to report on their own health outcomes.
PROMs, which measure a patient’s health status or health-related quality of life, are gathered through short, self-completed questionnaires. PROMs may be collected before and after a procedure or at regular intervals for those with long-term conditions. This information gives an indication of the outcomes or quality of care delivered to patients.
We have been at the forefront of PROMs research for over 25 years. Our work has been instrumental in the implementation of policies which allow patients to report on their own health outcomes. We have also made major contributions to developing and psychometrically testing PROMs for a wide range of conditions and interventions.
History of PROMs research
Work on PROMs at the School started in the 1980s with studies of prostate surgery in men and hysterectomy in women. In the 1990s, experts from medicine, sociology, psychology, epidemiology and statistics developed and tested new PROMs using rigorous qualitative and quantitative methods. PROMs were developed for stress incontinence, menorrhagia, plastic surgery, multiple sclerosis, day surgery, and coronary revascularisation.
This work was complemented by studies covering a range of methodological aspects on the routine use of PROMs in health care, including the influence of patients’ preoperative health, their expectations of outcomes, the impact of non-recruitment and non-response, and comparisons of patients’ and clinicians’ views of outcomes.
The school has been contributing work in psychometric methods for over 30 years and has become one of the few well-known UK groups able to undertake robust psychometric evaluation and development. Our early work was based in Classical Test Theory but has now broadened to include modern psychometric methods based on Rasch Measurement Theory.
We have used these methods to develop and evaluate questionnaire based measurement instruments across a wide range of clinical areas (including stroke, visual impairment, intensive care, dementia, heavy menstrual bleeding, diabetic neuropathy, childhood disability, carer well-being, diabetic neuropathy, and unplanned pregnancy, prostate cancer).
We host the “Outcomes Group” – a UK wide methodological forum which meets 3 times a year to share, discuss and debate issues arising in health related measurement.
PROMs in elective surgery
In 2005, a systematic review of ways to assess outcomes following hip and knee replacement, varicose vein surgery, hernia repair and cataract surgery was conducted. Pre and post-operative questionnaires for the four procedures were identified, and the feasibility of their routine use in the NHS tested. The findings highlighted that it was possible to recruit patients, follow them up and make risk-adjusted comparisons of providers, all at reasonable cost.
‘A major development in the history of surgery’
These findings were reported to the Department of Health in England in 2007 which announced that PROMs would be mandatory for all NHS patients undergoing groin hernia operations, hip replacements, knee replacements and varicose vein operations from April 2009. This continues and since 2011, these PROMs have been included in the NHS Outcomes Framework.
More than half a million patients participated in the programme in its first three years, representing 70% of eligible patients. Since April 2010, the outcomes for every hospital in the NHS in England have been published online.
In 2011 Professor Sir Bruce Keogh, Medical Director of the NHS, told the Financial Times newspaper that the advent of PROMs ‘would shift the focus among doctors [away] from technocratic results, where an operation was deemed a success regardless of whether the patient remained in pain.’ In 2012, Professor Sir Norman Williams, then president of the Royal College of Surgeons, described PROMs as a ‘major development in the history of surgery’.
Since 2010 we have studied many methodological aspects of using PROMs to compare providers, including:
- The relationship with patients’ views of the humanity (experience) of their care
- Impact of differences in surgery rates between districts
- Impact of different ways of defining outlier providers, equity of use and of outcome
- Impact of variations in outcomes of individual surgeons.
PROMs in dementia
Since 2013, we have been working on a programme of research to measure the health-related quality of life of people with dementia and their lay carers. Building on pioneering work a decade earlier that developed PROMs both for completion by people with dementia (DEMQOL) and by their lay carers (DEMQOL-Proxy), we have transformed those instruments using modern psychometric methods so that proxies’ views can reliably provide an indication of patients’ views.
These new PROMs have been used to assess the impact of memory clinics and have shown the improvements in quality of life that result. This has also allowed us to estimate the cost-utility of these services.
PROMs in emergency admissions to hospital
The inevitable lack of any knowledge of a person’s health status before an emergency admission to hospital has prevented the meaningful use of PROMs in assessing the quality of the care they receive. We are currently investigating the use of PROMs based on patients’ recall of their pre-admission health in a medical condition (heart attack) and surgical condition requiring emergency abdominal surgery.
Influence of comorbidity on PROMs
The impact of secondary conditions (comorbidity) that a patient has on their PROM is well recognised. Until now, fairly simple measures of comorbidity have been used, but we are investigating the use of more sophisticated measures that might improve the accuracy of taking comorbidity into account when comparing the performance of providers.
PROMs in prostate cancer
We are also conducting another study which is examining how patient reported outcomes vary for different ways of treating prostate cancer and between different providers.