In workstream 1, we were able to refine, validate and test new and existing patient-centred outcome measures to assess the main symptoms and concerns of patients and families receiving specialist palliative care, for use in workstreams 3 and 4. In addition – at the request of our PPI group – we completed a secondary analysis of existing qualitative data to understand the role of uncertainty in assessing the care needs of patients and families with advanced progressive illness.
The IPOS is a valid and reliable outcome measure, both in its patient self-report and staff proxy-report versions.73 It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.73
We demonstrated that palliative Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond the AKPS and PCPSS. In addition, we have shown that VoC (a measure of quality of life and experience of care) is brief and easy to use on a large scale with patients receiving palliative care across different settings. It is brief and easy enough to use for ill patients receiving palliative care, which, to the best of our knowledge, makes VoC uniquely able to provide patient-level feedback in real time when compared with the institutional-level indicators that are often used to assess the quality of healthcare services.
Uncertainty influences patient experience in advanced illness through affecting patients’ information needs, preferences and future priorities for care.78 Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision-making.
To the best of our knowledge, workstream 2 provided for the first time in palliative care a structured and evidence-based framework to conceptualise and consider the complex palliative care needs of those with advanced illness and their families. It also enabled us to characterise more fully what needed to be measured for workstreams 3 and 4 (the development of the casemix classification). Overall, participants reported that they thought it acceptable to measure complexity at the individual patient-level, but that any system to do so needed to incorporate the key dimensions of complexity included in the framework.
To our knowledge, until now there has not been a clear set of criteria to define models of UK specialist palliative care, making it challenging to compare different models of care provided by services. This component of the programme identified the criteria needed to characterise and differentiate models of specialist palliative care, a major paradigm shift to enable accurate reporting and comparison in practice and research.
Our detailed evidence on specialist palliative care costs and our casemix classification for specialist palliative care deliver a major advance for the sector. Each person needing specialist palliative care is different, with varying degrees of complex needs. We now have the means to understand this, systematically and at scale, and for practice, policy (including resourcing of palliative care) and research. The casemix classes show cost weight variations of up to 60% in hospital advisory care, up to 4.5-fold in inpatient hospices, and up to almost threefold in community care. The needs of each person are varied – not fixed – and require different resources to deliver care effectively. Understanding the casemix of those needing care, how this affects what outcomes can be achieved, how this varies across services and regions, and how this changes over time has the potential to help address inequities and provide more equitable specialist palliative care to all who need it.
Finally, our exploration of the impact of transitions between settings of care has clearly highlighted the human cost of poor communication and information-giving, the sometimes lack of continuity of care and the need for emotional and practical support for patients and families to ensure that moves between settings are better negotiated.