Author + information
- Prithwish Banerjee, MD∗ (, )
- Catherine Watson, RN, BSc, NMP and
- Danish Ali
- ↵∗Heart Failure Services, Department of Cardiology, University Hospitals Coventry and Warwickshire, Clifford Bridge Road, Coventry CV2 2DX, United Kingdom
It is widely known that despite the poor prognosis of heart failure, physicians who treat this disease do not routinely discuss prognosis with their patients unless directly asked about it (1). This may be because prognosis in a patient with heart failure is difficult to assess accurately because of a lack of robust prognosis models (2–4) and because physicians are concerned that broaching the subject of prognosis runs the risk of upsetting and unsettling the patient, especially given that patients seem to understand their diagnosis poorly despite repeated explanations (5).
However, assessing prognosis has several advantages: informing the patient and caregivers of the expected course of the disease in the individual so that the patient can plan his or her life ahead, including financial arrangements; determining the suitability for advanced treatment options such as ventricular assist devices or cardiac transplantation; allowing advance care planning to commence or a referral to palliative care services; and planning the deactivation of devices. We were interested in the patients’ own views on whether they would find information about their own prognosis related to the heart failure valuable (and why) and believed that this would be important to assess because patients’ perspective in such a sensitive matter could be crucial in determining future practice.
We therefore designed a questionnaire survey (Table 1) addressing the issue in 8 separate questions. Ethical approval was sought but deemed not necessary by the local ethics committee. The study was approved by the hospital’s Research and Development Department. The survey was sent out by mail to patients with an established diagnosis of “heart failure with reduced ejection fraction,” along with a cover letter, a consent form, and a patient information leaflet. All approached patients were informed about the nature of the study before the study material was mailed to them. Only those patients who returned the completed questionnaire and consent form were included in the final analysis.
The survey results are shown in Table 1. A total of 124 completed questionnaires with valid consent forms (43.5%) were returned out of 285 mailed. Sixty-two percent of patients had not received information on prognosis. A majority of the responders (78%) wished to be told about their prognosis, with at least 44% saying that the reason for this would be to plan their life ahead. The most popular choices for providing this information were the heart failure doctor (61%) and the heart failure specialist nurse (57%). The majority of patients chose a hospital clinic (68%) and a follow-up visit (60%) to receive this information verbally (90%). In all but the first 4 questions, multiple responses were allowed to capture all acceptable responses without provision for the respondents to mark their choices in order of preference, this was a limitation.
On the basis of the results of our survey, we believe that prognosis information should be considered an essential part of the information provided verbally to all patients with heart failure and offered to them during early consultations. This may require a prior assessment of individual prognosis using the best available current tools.
The authors thank Jacqui Hyland, Fiona Riley, Stephanie Kirkland, Lisa Hinitt, Johanna McCann, Hayley Nicholson, and Victoria Allport for their help in collecting the data and Drs. Sarah MacLaran and Claire Magee for their critical appraisal of the paper.
Please note: The authors have reported that they have no relationships relevant to the contents of this paper to disclose.
- 2018 American College of Cardiology Foundation
- Levy W.C.,
- Mozaffarian D.,
- Linker D.T.,
- et al.
- Banerjee P.,
- Gill L.,
- Muir V.