Improving Assessment and Management of Symptoms and Concerns in Heart Failure | A Longitudinal Study of the Feasibility of a Patient-Reported Outcome Measure in Clinical Practice
Palliative care, terminal care, end-of-life care, needs assessment, public health, chronic illness, Ireland.
Despite growing evidence, significant challenges remain in addressing palliative care needs in Ireland. The proportion of individuals requiring palliative care is higher than previously expected and is projected to increase substantially in the coming decades, driven by population ageing and the rising burden of chronic progressive conditions such as dementia, cancer, and cardiovascular diseases. The provision of palliative care in Ireland has historically been based on a cancer model. Given the ageing demographic with the associated increase in chronic progressive conditions and multimorbidity, novel models of palliative care are required which does reflect the increasingly complex and multimorbid needs of the ageing population.
Heart failure is a disease of older adults with a prevalence ≥ 10% among people > 70 years of age, is the commonest cause of hospitalisation of those ≥ 65 years of age and has > 30% mortality in the first year after diagnosis. Patients with advanced heart failure have unmet palliative care needs which are poorly identified and addressed. It is important that we understand their needs and address them with actions that will improve their quality of life.
This study aims to (i) explore the feasibility, acceptability and potential mechanisms of action of a palliative-specific patient-reported outcome measure based intervention and (ii) examine the methods to undertake this study to inform a future clinical research.
The intervention involved patients and the heart failure nurses using the Integrated Palliative care Outcome Scale with integrated heart failure nurse education and training. This study used both survey and interview approaches. Patients with advanced heart failure and their caregivers were recruited to participate in a pre-post follow-up study at nurse-led heart failure disease management clinics in two hospital study sites. Patients completed questionnaires at baseline and at three time points post intervention. Caregivers completed baseline assessments and a follow-up assessment 4-6 weeks post-intervention completion. Descriptive statistics were used to examine both intervention feasibility and the feasibility of the quantitative follow-up assessments used to evaluate the intervention. Interviews with patients and nurses explored the acceptability and potential mechanisms of action of this intervention.
In developing the study participant documentation, this process involved PPI input to ensure the documents could be understood by the recipients in the study.
This research study tested the palliative-specific patient-reported outcome measure-based intervention and methods among patients with advanced heart failure for the first time. The intervention and the follow up assessments were found feasible and acceptable by the nurses and patients. The potential mechanism of the intervention included the identification of patient participants’ unmet needs; a holistic assessment of their symptoms and concerns; and patient empowerment. Patient participants stated they felt empowered as they described themselves as being more knowledgeable and aware of their symptoms and concerns, whilst being better able to articulate these in the clinical consultation. This Integrated Palliative Care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.
This research provides valuable insights into the challenges in conducting patient-reported outcome measure research in this population. This work also gives novel insights into the mechanism of action of patient-reported outcome measures in palliative care.
July 2012 – October 2018
Dr Pauline Kane, Consultant Palliative Medicine in Laois, Offaly, Westmeath and Longford and former Cicely Saunders International PhD Research Fellow, Cicely Saunders Institute, King’s College London (Research Lead)
Professor Fliss Murtagh, Professor of Palliative Care at Hull York Medical School, Director of the Wolfson Palliative Care Research Centre and an NIHR Senior Investigator (PhD Supervisor)
Professor Jonathan Koffman, Professor in Palliative Care and Associate Director for the Wolfson Palliative Care Research Centre. (PhD Supervisor)
Dr Barbara Daveson, Palliative Care Outcomes Collaboration’s National Director (PhD Supervisor)
Kane PM, Daveson BA, Ryan K, et al. The need for palliative care in Ireland: a population-based estimate of palliative care using routine mortality data, inclusive of nonmalignant conditions. J Pain Symptom Manage 2015
https://pubmed.ncbi.nlm.nih.gov/25461670/
Kane P, Murtagh F, Ryan, K, et al. The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure. Heart Fail Rev 2015
https://pubmed.ncbi.nlm.nih.gov/26435042/
Kane PM, Murtagh FE, Ryan KR, et al. Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study. Palliat Med 2017 https://journals.sagepub.com/doi/10.1177/0269216317706426
Kane PM, Daveson BA, Ryan K, et al. Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure. BMJ Support Palliat Care 2017
https://pubmed.ncbi.nlm.nih.gov/28864449/
Kane, P.M., Ellis-Smith, C, Daveson, B.A, et al. Understanding how a palliative-specific patient reported outcome measure intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study. Palliat Med. 2017
https://pubmed.ncbi.nlm.nih.gov/29154724/
Kane PM, Murtagh FEM, Ryan K, McQuillan R, Mahon N, McAdam B, Higginson IJ, Daveson BA.
Patient-centred care interventions in chronic heart failure – a systematic review. Presented as a poster at the 14th World Congress of the European Association of Palliative Care, 9/5/15, Copenhagen, Denmark.
Kane PM, Murtagh FEM, Ryan K, Brice M, Mahon NG, McAdam B, et al. Challenges and solutions regarding the recruitment of patients with advanced chronic heart failure. Presented as a poster at the 9th World Research Congress of the European Association of Palliative Care, June 9-11, 2016, Dublin, Ireland.
Kane PM. (2012) ‘Improving access to palliative care in Ireland’. BuildCARE All-Assembly Meeting, 26/11/13, Dublin, Ireland.
Kane PM. (2013) ‘Needs and Education for Access: the NEAS study. Improving access to palliative care for patients with advanced heart failure’. BuildCARE All-Assembly Meeting, 15/11/13, New York, USA.
Kane PM. (2015) ‘Heart failure: more malignant that cancer.’ Beaumont Hospital Palliative Care Study Day, 17/9/15, Dublin, Ireland.
Kane PM. (2015) ‘Improving assessment and management of symptoms and concerns in advanced heart failure: a longitudinal study of the feasibility of a patient-reported outcome measure in clinical practice.’ BuildCARE All-Assembly Meeting, 12/10/15, Dublin, Ireland.
Kane, PM. (2016). Using Patient-Reported Outcomes in Heart Failure. Irish Hospice Foundation Chronic Heart Failure Conference, 2/9/16, Mater Misericordiae University Hospital, Dublin, Ireland.
Email: Pauline.Kane1@hse.ie
