Core outcomes for prognostication in palliative care (version 1.0)
Research type
Research Study
Full title
Developing core outcomes for prognostic research in palliative care
IRAS ID
307936
Contact name
Patrick Stone
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2022/03/69, UCL Data Protection Number
Duration of Study in the UK
2 years, 1 months, 31 days
Research summary
Talking to advanced cancer patients and their families or informal caregivers about their prognosis (the likely outcome/course of a disease) is not easy. On one hand, providing an accurate prognosis means that patients and families/informal caregivers can prepare for the future and make decisions about their care. On the other hand, an inaccurate prognosis can increase anxiety, depression and decrease quality of life in patients, as well as their families/informal caregivers. There are different methods available to help clinician's estimate a patient's end-of-life prognosis (prognostication), however there is no specific method that is considered "the best". Furthermore, it is difficult to research which method is the most appropriate to use, as studies looking at the impact of different prognostic methods often measure different outcomes, so their results cannot be compared or combined. A "Core Outcome Set" (COS) is a set of main outcomes that can be measured and reported in all studies of a health condition, allowing for the comparison and combining of such studies. We are proposing to develop such a COS to assess the impact of end-of-life prognostication in palliative cancer care.
Deciding on which outcomes should be included in a COS requires several steps. We plan to conduct semi-structured interviews with palliative care patients, informal caregivers, and clinicians to explore their perceptions and experiences of prognostication. Outcomes of end-of-life prognostication identified in the interviews will then be combined with those found in pre-existing literature and taken forward to a questionnaire process known as a "Delphi survey". During the Delphi survey, we will identify experts in palliative care, including patients, informal caregivers, clinicians, and relevant academics/researchers. These experts will be asked to give their opinion on which outcomes are most important via several rounds of questionnaires/surveys. The resulting, prioritised outcomes will be considered as the core outcome set.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
22/LO/0469
Date of REC Opinion
6 Sep 2022
REC opinion
Further Information Favourable Opinion