In contrast to the typical measures employed to assess outcomes in healthcare, such as mortality or recovery rates, there exist difficulties in defining which outcomes should be measured at the end of life, when death cannot be avoided.
A variety of tools have been developed to assess different dimensions of care outcomes at the end of life, which include measures focused on the patient, the family, the health professionals, and healthcare services as a whole. However, with such a variety of stakeholders, there is no consensus on a minimal set of outcomes which should be measured in palliative care, and in particular in the last days/weeks of life. This lack of consensus generates difficulties when trying to interpret evidence and compare the effectiveness of interventions, but most importantly when delivering care. Furthermore, it is also unknown whether many of the existing outcome measures respond to patient needs, or whether they focus on aspects which may be of more importance to health professionals.
Therefore, there is a need to develop a core outcome set for best care for the dying person which not only will be patient-centred, but most importantly, where the perspective of the patients will be included in its development, that is patient-relevant outcomes.
Coordinating Institution: University Center for Palliative Care, Inselspital, Bern University Hospital / Switzerland
Contributors ordered alphabetically by country:
- Vilma Tripodoro, María Laura Daud & Gustavo De Simone
Pallium Latinoamérica, Argentina
- Kerstin Kremeike & Raymond Voltz
Zentrum für Palliativmedizin Universitätsklinikum Köln (AöR), Germany
- S. Iris Halfdanardottir & Valgerdur Sigurdardottir
Palliative Care Unit, Reykjavik, Iceland
- Jeremy Johnson
Karunashraya, Bangalore, India
- Agnes van der Heide & Natasja Raijmakers
Erasmus MC, Rotterdam, Netherlands
- Jean Clark & Simon Allan
Arohanui Hospice, Palmerston North, New Zealand
- Dagny Faksvåg Haugen & Katrin Sigurdardottir
University of Bergen, Norway
- Haroon Hafeez & Kashif Sajjad
Shaukat Khanum Memorial cancer Hospital & Research centre, Pakistan
- Catarina Simões
Palliative Care Team H. Luz Arrábida, Portugal
- Carl Johan Fürst, Birgit Rasmussen & Ulrika Olsson-Möller
The Institute of Palliative Care, Sweden
- Steffen Eychmüller & Sofia Zambrano
Palliativzentrum Inselspital, Bern, Switzerland
- John Ellershaw
Marie Curie Palliative Care Institute Liverpool, UK
Disease Category: Other
Disease Name: Advanced cancer and advanced non-malignant illnesses, Palliative care
Age Range: 18 - 100
Nature of Intervention: Palliative
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient/ support group representatives
- Service providers
- Service users
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Focus group(s)
- Systematic review
The study will involve four stages for the development of a core outcome set.
Initially, a systematic review of the literature will identify the outcomes measured in existing peer reviewed literature, including interventional studies, observational studies, and qualitative studies. Grey literature and relevant national guidelines from different countries will be searched for.
A second stage will determine patient and proxy defined outcomes of care at the end of life through quantitative and qualitative methodologies (e.g. in-depth interviews, focus groups, q-sort interviews, questionnaires) with participants from these stakeholder groups. This step will be duplicated in several countries lead by members of the International Collaborative for Best Care for the Dying Person. Results from existing studies from the Collaborative will also be collated into the list of outcomes.
Thirdly, from a list of salient outcomes identified through stages 1 and 2, international experts, researchers, bereaved family members, and patients will be asked to rank the importance of the preselected outcomes in order to prioritise outcomes through a Delphi process.
Lastly, a face-to-face consensus meeting of international experts, researchers, family members, and patient/family representatives will take place in order to define, propose and endorse the core outcome set.