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

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

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)

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

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

Models of care Curative Palliative Curative Palliative Palliative

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

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

Corporate HNA Based on demands, wishes and perpectives of interested parties Important if policies are to be sensitive to local curcumstances But might blur the difference between need and demand, science and vested interests With the use of qualitative or quantitative methods, seeking to cover as many aspects and groups as possible (given economy and time frame)

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

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

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

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

Lung cancer vs COPD

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

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

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

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

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