Palliative care

1. Palliative care Challenging health need assessment Lotte Rogg, MD, Ullevål Cancer center

2. Plan for this session Palliative care, definition Health needs assessment Corporate HNA Comparative HNA Epidemiological HNA Challenges in needs assessment for palliative care

4. Palliative care Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. Palliative care affirms life and regards dying as a normal process, and neither hastens nor postpones death. - European Association for Palliative Care (EAPC) / World Health Organization (WHO)

5. Palliative care definition No limitations regarding diagnosis No limitations regarding health services No clear limitations regarding when in disease trajectory

6. Development of palliative care in UK Started late 60ies Focus on cancer patients Last days and weeks of life Hospices Palliative care units/ambulant teams Moving towards non-cancer Debate on when in disease trajectory

7. Models of care Curative Palliative Curative Palliative Palliative Curative

8. Health needs assessment (HNA) A systematic method of identifying unmet health and healthcare needs of a population, and making changes to meet those unmet needs Used for service planning, monitoring/evaluation and responding to changing needs

9. Need of health care the ability to benefit from health care Stevens and Raftery 1994

10. Corporate HNA

11. Comparative HNA Contrasting services in one area with those elsewhere Contrasting services available in one group with those in another

14. Epidemiological HNA Three sources of information: Size of the need Services available locally Effectiveness/cost-effectiveness of potential services

15. Six key steps • Development of general categories: • statement of problem • division into relevant subgroups • Determining the size of the need • Determining the current level of services • Determining effectiveness and cost-effectiveness • Bringing information together, making recommendations for future development of services

16. Development of general categories • Statement of the problem: defining palliative care, terminal illness, palliative medicine • Division into relevant subcategories: different palliative care services (hospice, generalist, specialist services), different diseases/groups of patients and families in need

18. Lung cancer vs COPD

21. Determining the size of the need • Incidence and prevalence. For each subcategory, estimate incidence and prevalence and calculate likely need. in palliative care this often involves using data on death rates and symptoms experienced local data best, if possible

22. But remember! Only as good as the quality of the data Mortality rates says nothing about burden of disease, neither duration nor symptom burden or effect on carers Patients often too weak to tell, use of proxies widespread in research/needs assessment

23. Determining current level of services • Nature and level of services currently provided current availability and use of services, by subcategory comparison of services available locally with those available elsewhere

25. Determining effectiveness/ cost-effectiveness • Reviewing effectiveness of services. in palliative care outcome measures such as QoL, symptom control, impact on family and carers often relying on existing systematic literature, if possible considered for different subgroups

28. Recommendations for future service development • Bringing together the information on need, available services and effectiveness, gaps and mismatches of provision and thereby making recommendations for future development of services