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

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11 pages
Patient-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. Methods A 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. Results Overall 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. Conclusions Professionals 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.
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Bauseweinet al.Health and Quality of Life Outcomes2011,9:27 http://www.hqlo.com/content/9/1/27
R E S E A R C H
Open Access
Implementing patient reported outcome measures (PROMs) in palliative care  usersfor help 1,2* 1,2 1 3 4 Claudia Bausewein , Steffen T Simon , Hamid Benalia , Julia Downing , Faith N MwangiPowell , 1 1 1 Barbara A Daveson , Richard Harding and Irene J Higginson for PRISMA
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Abstract Background:Patient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 professionalsviews using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures. Methods:A 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. Results:Overall 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 patientssituation, 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. Conclusions:Professionals 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.
Background 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 (qual ity assurance of services) and research (e.g. studying the effectiveness of an intervention). The measurement of effects and outcomes on patients is also central to end oflife (eol) care and the conduct of research in eol care.
* Correspondence: Claudia.bausewein@kcl.ac.uk 1 Kings College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK Full list of author information is available at the end of the article
Palliative care services should be committed to excel lence and high quality of care requiring the regular and systematic evaluation of the processes of care and mea surement of outcomes data using validated instruments [2]. In the future, commissioning of services will be based on outcomes rather than activity and PROMS will have a central role in this [3]. Although initiatives were started over the last decade to improve outcome measurement in palliative care [2,4,5] a clear roadmap or uniform approach to measur ing outcomes in eol clinical care and research is lacking [2]. In consequence, there are differences in the inter pretation of results of studies, metaanalyses are often limited because no core measure is used, and, impor tantly, some studies fail because they have used
© 2011 Bausewein et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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