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

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.

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

“…[9][10][11] At the individual level, the intention of PROMs feedback is to improve the detection of patient problems, to support clinical decision-making about treatment through ongoing monitoring and to empower patients to become more involved in their care. 12,13 Despite the fact that the ambitions for the usage of PROMs data have multiplied, PROMs research has focused on form rather than function.…”

Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care

“…An 'expert' was defined as having at least 6 years of experiences in use of PROMs either in clinical care or research in palliative and EOL care. These criteria were used to draw a sample from the respondents of an international online survey on outcome measures in palliative care of interest in the workshop [9]. In addition, experts were located through a literature search on publications on outcome measures in palliative and EOL care and invited for participation.…”

Priorities for Health Economic Methodological Research: Results of an Expert Consultation

“…59 Outcome measures are also problematic in particular patient groups, such as those with impaired cognitive abilities who may not be able to complete patient reported outcome measures; 60 and in particular interventions, such as palliative care, where the choice of outcome is not straightforward or uniform. 61 The latter point extends to the "care sector" generally, where fewer appropriate outcome tools are available than in the "cure sector", although recent research such as the Adult Social Care Outcomes Toolkit (ASCOT) has started to address this. 62 Consequently there is an issue of benefit measurement in complex treatment situations and patient profiles.…”