Background: The hospice movement has provided an excellent model of specialist palliative care for those with advanced illness approaching the end of life. However, there are marked inequities in provision of this care, and major geographical variations in the resourcing of palliative care, often resulting in a poor match between the needs of a patient/family and resources provided to meet those needs.
Objective: To develop/test a casemix classification to accurately capture the complex needs of patients with advanced disease, better quantify those needs and more fairly allocate resources to meet them. A ‘casemix classification’ groups patients into classes according to differing care needs to help inform the resources needed to meet those care needs.
Design: Workstream 1 comprised the validating and refining of patient-centred measures of health status and well-being. In workstream 2, stakeholder interviews with patients, families, policy-makers, service providers and commissioners were carried out to understand complexity/casemix and models of specialist palliative care. In workstream 2 the casemix classification was developed through a multicentre cohort study. Workstream 4 comprised a longitudinal mixed-methods study to test the casemix classification, with a nested qualitative study to explore experiences of transitions between care settings.
Setting: Voluntary sector and NHS specialist palliative care services across England.
Participants: Patients ≥ 18 years receiving specialist palliative care, their families and the professionals delivering this care.
Results: For the Integrated Palliative care Outcome Scale validation: data from 376 patient participants and 161 clinicians showed this measure has a strong ability to distinguish between clinically relevant groups, good internal consistency (α = 0.77), and acceptable-to-good test–retest reliability (60% of items kw > 0.60). The Phase of Illness measure showed function and symptoms/concerns varied significantly by Phase of Illness, but Phase of Illness reflected additional construct(s) and so is important for casemix (workstream 1 conducted 2013–15).
To gain stakeholder perspectives, 65 participants were interviewed. Based on emergent themes, we developed a theoretical framework to conceptualise complexity in specialist palliative care. This framework emphasises that considering physical, psychological and social needs is not enough to characterise complexity. Number, severity and range of needs all need to be considered in the development of a meaningful casemix classification. To understand models of care, semistructured interviews were conducted with 14 participants, 54 further participants took part in a two-round Delphi survey and interviews were conducted with 21 service leads. Twenty criteria were adopted to define/distinguish models of specialist palliative care (workstream 2 conducted 2014–16).
For the development of the casemix classification, a total of 2469 patients were recruited, providing data on 2968 episodes of specialist palliative care. The mean age was 71.6 years, 51% of patients were male, 74% were white and 25% were non-cancer patients. Episodes of care lasted a median of 8 days (range 1–402 days) in hospital advisory care, 12 days (range 1–140 days) in inpatient units, 30 days (range 1–313 days) in the community. The median costs per day (lower–upper quartiles) were: £56 (£31–£100) in hospital advisory, £365 (£176–£698) for inpatient, and £21 (£6–£49) in community care. Seven hospital advisory, six inpatient and six community casemix classes for specialist palliative care were developed, based on levels of pain, other physical symptoms, psychological symptoms, functional status, palliative Phase of Illness, living alone and family distress (workstream 3 conducted 2016–18).
For the testing of the casemix classification, a total of 309 patients (mean age 66.9 years, 55% female, 85% white) provided data on 751 episodes of specialist palliative care. The casemix classification was able to accurately predict the actual cost-per-day of care, especially for hospital advisory and community care. The actual costs of inpatient hospice care were consistently higher than predicted class costs, although cost weights remained consistent. Interviews to understand transitions between care settings were conducted with 26 participants (mean age 68 years, range 36–91 years). Four themes emerged: uncertainty about the new care setting, biographical disruption, the importance of continuity of care and the need for emotional/practical support during transition (workstream 4 conducted 2018–19).
Limitations: Recruitment was challenging but adding new sites helped to overcome this. Models of palliative care proved more diverse and harder to categorise than expected. This casemix classification needs broader testing among those with non-cancer conditions, especially those with multiple conditions.
Conclusions: The Integrated Palliative care Outcome Scale is a valid, reliable outcome measure for use in advanced illness. We have developed (1) an evidence-based framework to conceptualise complexity of palliative care needs, (2) defined criteria to characterise/differentiate models of specialist palliative care and (3) a casemix classification for specialist palliative care. Each person needing specialist palliative care is different, with varying degrees of complex needs. We now have the casemix classification to understand and capture this, systematically and at scale, for practice, policy and research. This has the potential to help address inequities and provide more equitable specialist palliative care to all who need it. Future research is needed, including further validation of measures, more detailed research into models of care, and further testing of the casemix classification.
Study registration: This trial is registered as ISRCTN90752212.
Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme and is published in full in Programme Grants for Applied Research; Vol. 11, No. 7. See the NIHR Funding and Awards website for further award information. It was also supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London, previously Collaboration for Leadership in Applied Health Research and Care) at King’s College Hospital NHS Foundation Trust.
Hospices have provided an excellent model of palliative care for those with advanced illness in the last months of life. However, some people do not get the care they need and provision varies considerably between different regions of England. We therefore aimed to develop a classification system to accurately reflect the care needs of those with advanced illness, so that resources can be better matched to needs.
We interviewed different patients, families, service providers and funders to understand the complex care needs that people have and how a system could be developed. Then we undertook a large study with those with advanced illness to develop a system. Finally, we tested the system with a new group of people experiencing advanced illness.
Sixty-five participants were interviewed. Based on these interviews, we developed a way to better understand complex needs, with the individual person at the heart of this understanding.
A total of 2469 people contributed to our large study. We established the resources used to provide palliative care: on average, the cost per patient was an additional £56 per day for those receiving specialist palliative care in hospital, £365 per day for those receiving inpatient hospice care and £21 per day for those receiving specialist palliative care at home. We developed a system based on factors such as pain and other symptoms, level of family distress, and whether or not the patient was living alone. These factors indicate what palliative care is needed and how much it might cost. We tested this system with 309 further people with advanced illness, and it was able to predict costs well.
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