Title: Implementing patient-centred outcome measures in palliative care clinical practice: A systematic review update of facilitators, barriers and recommendations
Funder: Marie Curie

Abstract: Background: patient-centred outcome measures have been playing an increasingly important role in evidence based medicine as a way to understand the effects of health interventions on patients and families. However, their routine use in practice has been slow and difficult to implement. Aim: to update a systematic review we conducted 9 years ago which had the following objectives: To identify the facilitators to implementing patient centred outcome measures in palliative care clinical practice To identify the barriers to implementing patient centred outcome measures in palliative care clinical practice To identify lessons learned on to implementing patient centred outcome measures in palliative care clinical practice To identify the patient centred outcome measures used In the present study we aim to add the following objectives: To identify the implementation models used when implementing patient centred outcome measures in palliative care clinical practice To identify what implementation outcomes were measured and how, when implementing patient centred outcome measures in palliative care clinical practice To assess costs of to implementing patient centred outcome measures in palliative care clinical practice To update the recommendations from the original paper when implementing patient centred outcome measures in palliative care clinical practice to inform the implementation process in palliative care clinical practice for stakeholders at different levels. Design: Systematic literature review and narrative synthesis. A realist review may be considered. The following inclusion and exclusion criteria will be revised by the Advisory Committee members. Inclusion criteria: (a) primary studies reported in English, Portuguese, Spanish and German because these languages are spoken in the wider study team; (b) studies using a patient centred outcome measure alongside the clinical care of adult patients (18 years old or older) with advanced disease in palliative care settings; and (c) studies reporting barriers and/or facilitators of the implementation of the patient centred outcome measure. All study designs will be included. Exclusion criteria are as follows: (a) published literature other than primary studies (i.e. review articles, books and conference articles); (b) studies reporting exclusively on development and feasibility phases of new measures, which did not include comments of users. Articles have to meet all inclusion criteria, and no exclusion criteria to be included. Data Sources: Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Embase and British Nursing Index will be systematically searched from 1985. Hand searching of reference lists for all included articles and relevant review articles will also be performed. Expected search results: in our previous systematic review there were a total of 3863 articles to screen. Of these, 31 articles met the inclusion criteria. We expect these numbers to be considerably higher given the increasing interest in the topic and also because out original review has been cited in numerous empirical studies and various reports. We also expect the number of publications to be higher due to the additional objectives for the present study. Analysis plan: Descriptive data will be extracted from included studies to give an overview of country, publication date, implementation models used, measures used, costs associated with implementation. Qualitative data will be extracted and analysed in accordance with the Guidance on the Conduct of Narrative Synthesis in Systematic reviews. Element 1 concerns the role of theory in evidence synthesis, Element 2 refers to the development of a preliminary synthesis, Element 3 pertains to exploring relationships within and between studies and in Element 4, the robustness of the synthesis is assessed. We will update the recommendations generated in the original systematic review.

Lay abstract: The importance of using questionnaires to understand the effect of health interventions has been growing and is increasingly recognised as a fundamental component of evidence based medicine. Specifically, questionnaires which are filled by the patient, who is the person receiving those interventions. In palliative care, it is equally important to learn not just about physical effects, but also, psychological, existential, emotional and practical ones. These questionnaires help shape patient centred care because they focus on their individual needs and can also help improve the quality of the care provided. Implementing these measures in palliative care clinical practice, in different settings, is critical but evidence shows that it has not been done widely. It is therefore imperative to learn what are the facilitators and barriers related to implementing these questionnaires in clinical practice. We will update a systematic review we conducted ten years ago on facilitators, barriers and lessons learned on implementing patient reported outcome measures in palliative care clinical practice. We will additionally look for what were the implementation models used, what were the costs of implementing those measures and will also focus on questionnaires filled by family members and healthcare professionals, if the patient is not able to filled them

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE