Implementing patient reported outcome measures (PROMs) in palliative care - users' cry for help

Barbara A Daveson,Steffen T Simon,Faith N Mwangi-Powell,Richard Harding,Julia Downing,Irene J Higginson,Claudia Bausewein,Hamid Benalia

doi:10.1186/1477-7525-9-27

Abstract

BackgroundPatient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals' views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures.MethodsA web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire.ResultsOverall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients' situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs.ConclusionsProfessionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.

Highlights

Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care
We report here a study aimed to describe the use and experiences with PROMs of professionals working in palliative care in Europe and Africa
It might be argued that only people with a positive attitude towards PROMs participated in this survey

Summary

Introduction

Patient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. Patient-reported outcome measurement plays an increasingly important role in health care in allowing patients to assess the effect and quality of their care [1]. Patient reported outcome measures (PROMs) are used in clinical care (e.g. assessing the health status and needs of patients in a hospital at admission), audit (quality assurance of services) and research (e.g. studying the effectiveness of an intervention). The measurement of effects and outcomes on patients is central to endof-life (eol) care and the conduct of research in eol care. Recent reports from a clinical workshop indicate that assessment and measurement are important domains, and form a priority area in eol research [7]. Within the midst of an increasing ageing European population, and a continued underspend (0.5%) in eol cancer research [8], a common approach regarding outcome measurement is urgently required

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