Elizabeth Gibbons,
1Nick Black,
2Lesley Fallowfield,
3Robin Newhouse
4and Ray Fitzpatrick
11Health Services Research Unit, Nuffield Department of Population Health, University of Oxford,
Oxford, UK
2Department of Health Services Research and Policy, London School of Hygiene and Tropical
Medicine, London, UK
3Sussex Health Outcomes Research and Education in Cancer (SHORE-C), University of Sussex,
Brighton, UK
4Indiana University School of Nursing, Indianapolis, IN, USA
Declared competing interests of authors: Robin Newhouse reports personal fees from the Patient Centered Outcomes Research Institute and being chairperson and on the methodology committee, being a board member for AcademyHealth, and grants from Agency for Health Care Research and Quality outside the submitted work.
Published May 2016
DOI: 10.3310/hsdr04160-55
This essay should be referenced as follows:
Gibbons E, Black N, Fallowfield L, Newhouse R, Fitzpatrick R. Patient-reported outcome measures and the evaluation of services. In Raine R, Fitzpatrick R, Barratt H, Bevan G, Black N, Boaden R, et al.
Challenges, solutions and future directions in the evaluation of service innovations in health care and public health. Health Serv Deliv Res 2016;4(16). pp. 55–68.
pATIENT-REpORTED OuTCOmE mEASuRES AND THE EVALuATION OF SERVICES
56
NIHR Journals Library www.journalslibrary.nihr.ac.uk
List of boxes
BOX 4.1 Dimensions of health in PROMs 59
List of abbreviations
CAT computer adaptive testing
PCORI Patient-Centered Outcomes Research Institute PROM patient-reported outcome measure
PROMIS PatientReported Outcomes MeasurementInformation System RCT randomised controlled trial
Abstract
A growing consensus has emerged about patient-reported outcome measures (PROMs) as an important tool in the evaluation of services. There is little dispute regarding the range of relevant dimensions of health status, the types of measures available to capture what matters to patients, their required measurement properties and reporting standards when PROMs are used in studies. Their use on a large scale in the NHS national PROMs programme has produced valuable lessons about elective surgery but also about PROMs as tools.
There are outstanding issues if PROMs are to be further applied in the evaluation of services. Patients need to be actively engaged. Health professionals need to see the merits of this approach to patient care and outcome assessment. PROMs need to be integrated into health records. Some recent initiatives have attempted to address these three needs, and further development and testing of such initiatives is needed.
Scientific summary
A growing consensus has emerged about patient-reported outcome measures (PROMs) as important tools in the evaluation of services. There is little dispute regarding the range of relevant dimensions of health status, the types of measures available to capture what matters to patients, their required measurement properties and reporting standards when PROMs are used in studies. Their use on a large scale in the NHS national PROMs programme has produced valuable lessons about elective surgery but also about PROMs as tools.
Respondent engagement is fundamental to ensure adequate response rates to be able use outcomes for the evaluation of services. Evidence exists that patients with poorer health status at baseline impact on response rates which may produce misleading evidence of the effectiveness of services. Different mechanisms for the delivery and capture of PROMs are being developed such as electronic data collection and use of other media. This could complement existing paper-based methods and has the potential to reduce respondent burden of completion.
Specific populations pose particular challenges in engagement such as those with developmental limitations (children) and those with cognitive impairment such as patients with dementia or learning difficulties. In addition, the collection of baseline measurement in patients experiencing acute or emergency health problems poses difficulties.
Missing or incomplete data present analytical problems and, despite a range of statistical procedures used, performance of services could be influenced by methods adopted.
Evidence suggesting there is diversity in levels of staff engagement from enthusiasm to scepticism. Difficulties are apparent in relation to understanding and interpretation of the data, as well as the challenges of incorporating data into existing systems and processes of care. This results in little impact of PROMs data used for service improvement.
Further evolution in PROMs is still needed so that they focus as much on practical, feasible and clinically actionable content as on the psychometrically validated content emphasised to date. Development and testing of feasible software, platforms and electronic health records needs to be developed to support PROMs as a routine feature of both clinical care and evaluative research. Training of staff to strengthen understanding of PROMs and interpreting will be essential. Most outstanding of all will be the need to establish benefits to patients. There is much speculation about PROMs supporting and informing patients’ choice of health-care options, health and consulting behaviour and self-management, but there are very few studies to demonstrate such benefits.
Introduction
Health services are under constant pressure to be more patient centred and positively valued by patients and the public. Evaluative research reflects that pressure by increasingly assessing outcomes as perceived by patients. Patient-reported outcome measures (PROMs) are a diverse array of questionnaires and related techniques intended to obtain patients’ own views of their health status and benefits experienced from receiving health services. Because of their focus on accurately capturing the patient’s perspective on outcomes, they have been seen for some time as having enormous and distinctive potential to transform the assessment of the performance of services.1 A recent overview described measures of health status
(effectively PROMs) as ‘. . . the most important scientific development in the last 50 years in the field of health services research’.2 This essay provides an overview of the progress that has been made in the
measurement of patients’ views of health status and outcomes, and identifies some of the key challenges to be faced in their further use to evaluate services.