International 'Care Of the Dying Evaluation'
Research type
Research Study
Full title
International ‘Care Of the Dying Evaluation’ (CODE): quality of care for cancer patients as perceived by bereaved relatives
IRAS ID
225922
Contact name
Catriona Mayland
Contact email
Sponsor organisation
Royal Liverpool & Broadgreen University Hospitals NHS Trust
Duration of Study in the UK
2 years, 5 months, 1 days
Research summary
Evaluating how well we care for hospital cancer patients at the end of their life: an international survey of bereaved relatives
Providing excellent care to dying cancer patients and their families is very important. One way to assess the quality of care is to ask bereaved relatives to complete a questionnaire after their family member has died. The questionnaire can ask about the care given to the patient and about their own perceptions about the support they received. This information can identify and improve areas where care was not rated well.
One questionnaire is the ‘Care Of the Dying Evaluation’ (or CODE) which has been used a lot in the UK. CODE was developed with the help of bereaved relatives. We now want to use the CODE questionnaire to have bereaved relatives’ views about care provided in seven European and Latin American countries.
Within each country, volunteers and bereaved relatives are being asked to give feedback about the CODE questionnaire e.g. whether it is sensitive, easy to understand. Following this, a common version of CODE, suitable for use across all the countries, will be developed.
Two months after the death of a cancer patient in hospital, we will ask the most appropriate family member to complete the CODE questionnaire. We aim to obtain at least 100 completed CODE questionnaires from each participating country. The questionnaire results will be used to understand how care is currently provided. Additionally, it will help identify areas needing improvement. The results will be fed back to the organisations providing the care and action plans will be used to try to find ways to improve areas of care that were rated poorly.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
17/EE/0302
Date of REC Opinion
3 Aug 2017
REC opinion
Further Information Favourable Opinion