Prognostic dissonance of seriously ill HD patients
Research type
Research Study
Full title
Perceptions of illness severity and life expectancy: staff, patient and close person.
IRAS ID
202748
Contact name
Edwina Brown
Contact email
Sponsor organisation
Imperial College London and Imperial College Healthcare NHS Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
End stage renal disease (ESRD) is associated with significant morbidity. Quality of life for those affected is markedly lower than most other long term conditions including cancers and the high symptom burden can impact markedly on functional ability, cognitive state and emotional well-being. The need to align goals of care-receivers and care-givers is paramount. Shared decision making support enables patients to make decisions regarding treatment that match their individual beliefs, preferences and values. It requires consideration of accurate information, reasoning about consequences and formulation of an informed and evidence based evaluation.
Previous work in the United States has shown that nephrologists may be reluctant to discuss prognosis with their haemodialysis patients that these patients are more optimistic about prognosis and transplant candidacy than their nephrologists and that patients’ prognostic expectations are associated with their treatment preferences.
We plan to repeat this study within the United Kingdom to see whether similar practice occurs (in a system where persevering with haemodialysis is not remunerated). We plan to identify patients at two local haemodialysis centres with >20% risk of mortality in the next year. Questionnaires will be distributed to these patients, their close persons’, nursing and medical staff to explore understanding of illness, transplant suitability and goals of care. In addition to previous work, we will specifically include cognitive assessment tools to review whether patients with cognitive impairment are able to understand disease process and projectory, and if this impacts on decisions regarding treatment. Respondents will have up to four weeks to return the questionnaires.
If similar practice is confirmed, we hope to establish why nephrologists may not discuss prognosis with their dialysis patients and whether interventions can be put in place, to facilitate open dialogue.REC name
London - South East Research Ethics Committee
REC reference
16/LO/1986
Date of REC Opinion
24 Nov 2016
REC opinion
Unfavourable Opinion