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Cicely Saunders Institute research featured at NIHR Palliative Care Conference

Researchers from the Cicely Saunders Institute recently presented a selection of their research at the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Greater Manchester Palliative and Supportive Care Conference. 

Here's an overview of the presentations that were given. 

Patient wellbeing and caregiver burden in long-term neurological conditions: Baseline: results from the OPTCARE Neuro trial

Nilay Hepgul presented some preliminary results using baseline data from the OPTCARE Neuro trial, a multi-centre RCT evaluating the effectiveness of short-term integrated palliative care (SIPC) for patients with long-term neurological conditions (LTNCs) and their caregivers. The presentation gave an overview of the trial design and the progress made to date. Using the baseline data collected to date, the presentation showed that poorer patient quality of life is associated with greater caregiver burden even after adjusting for caregiver factors (age, illness, gender, education, and employment), patient diagnosis and illness duration. Nilay summarised that these results support the idea that improvements in patient quality of life through the provision of palliative care, may have associated benefits for caregivers. The ongoing OPTCARE Neuro trial will provide further evidence to explore the impact of early palliative care in this population.

What does complexity mean to patients and professionals? Part 1: A framework to help understand and define complexity in palliative care

Sophie Pask presented on qualitative findings from the C-CHANGE project, a study looking to improve palliative care by better matching resources to needs. This consisted of interviews with patients, carers and professionals working in palliative care about their views on what makes some complex at the end of life, resource allocation and the use of outcomes in palliative care.

This presentation showcased a conceptual model that derived from the interviews, mapping complexity in palliative care. Patients are often described as complex in palliative care but there is no standardised definition. The model includes individual complexity (e.g. physical, psychological, social and spiritual needs), changing needs throughout the illness trajectory, and how complexity can exist within interactions between the person, their family and health professionals. Additionally, the model considers complexity at a service and system level, as well as in the wider societal context.

What does complexity mean to patients and professionals? Part 2: Capturing complexity at individual patient level

Cathryn Pinto presented the findings from the qualitative research component of the C-CHANGE project (details provided above). This presentation centred on how we could best capture and measure complexity in palliative care. Cathryn illustrated this in her presentation with quotes from interviews with patients, carers and professionals working in palliative care. The findings provided a variety of suggestions to capture the complexity of patients’ and carers’ needs more meaningfully. Using an individual patient-level classification (casemix) was perceived to offer benefits for improving resource allocation in palliative care, but needs to be truly reflective of complexity and feasible in practice.   

Multiple cause of death and hospital death in patients with end-stage liver disease in England, 2001-2014

Jen-Kuei presented the results from an analysis of Office of National Statistics Death Registration Database of England, 2001-2014. This study aims to describe the multiple causes of death and their association with hospital death in patients with end-stage liver disease (ESLD). A total of 102281 patients were included, of whom 76644 (74.9%) died in hospital. Infection and renal failure were highly associated with hospital death in patients with ESLD. Strategies to prevent and manage these problems may be of value in improving end of life in these patients. Besides, the reasons of the disproportional low hospital deaths in patients with alcohol-related disorders need to be explored.

The full abstracts and slides for each presentation can be found online:

In addition, researchers presented posters from the following projects:

What defines a model of palliative care? A multi-method study across the UK to determine criteria for models of palliative care.

Suzanne O’ Brien presented this poster on behalf of herself and Alice Firth. This poster investigates the various configurations, skill-mix, settings and other characteristics which determine different models of palliative care. Following a literature review, and semi-structured interviews across eight sites in England, 37 potential criteria were derived to reflect models of palliative care. A two-round online Delphi study of stakeholders (clinicians, senior and national leads, policy-makers, commissioners) was then conducted to seek expert consensus on the relevance/importance of these criteria. Thirty-seven criteria were refined to 16 based on experts’ evaluations and comments. These criteria included: setting, type of care, size of service, number of disciplines, mode of care, training, use of experience measures and range of interventions. It also included the ‘out of hours’ characteristics of referrals, care, availability, mode, type, as well as bereavement follow-up and risk assessment.

Innovating patient and public involvement in palliative care and rehabilitation research

Sophie Pask presented this poster on behalf of the Patient and Public Involvement Strategy team. The poster detailed the innovative patient and public involvement (PPI) work at the Institute developed in response to a consultation exercise with our PPI members. This includes face-to-face workshops with a ‘dragons den’ format, and a new online discussion forum: The poster was awarded the ‘Best Poster Prize’.

Working with PPI members has enabled a radical re-design of the Institute’s approach PPI. This has strengthened the two-way dialogue between PPI members and researchers, and the calibre and relevance of the Institute’s research to patients and families.