1. Models for the organisation of palliative care for patients with cancer and dementia Professor Steve Iliffe, Nathan Davies, Dr Mareeni Raymond Dr Alex Warner & Laura Maio in Primary Care at UCL Professor Sam Ahmedzai, Department of Oncology, Sheffield University Professor Jill Manthorpe, Social Care Workforce Research Unit, Kings College London

2. Aim To develop and test a tool to assess the quality of palliative care: For cancer & dementia In different health care systems In different settings (home, care home, hospital, hospice)

3. European centres Nijmegen, Holland Bonn, Germany Trondheim, Norway Bologna, Italy London, England

4. Methodology Modelling palliative care for people with dementia or with cancer (nominal groups, Delphi processes) Developing quality indicator sets (technology development, co-design) Field testing QIs in primary care, care homes, hospitals and hospices (before and after study)

5. Technology development & co-design 2 Rapid appraisal of the literature Research team reaches consensus on key themes for qualitative interviews Review of national policies in England, Germany, Italy, the Netherlands & Norway List of questions developed and asked of subject matter experts Generic model discussed with subject matter expert groups to refine and develop it further Research team constructs generic model of palliative care

6. Modelling Detailed system description drawn up using subject matter experts (SMEs) In policy, service organisation, service delivery, patient groups, & research in palliative care Matrix of macro-, meso-,micro- level organisation In four settings: own home, care home, hospitals, hospices Interviews & focus groups with SMEs Kotiadis K, Robinson S Conceptual modelling: knowledge acquisition and model abstraction in Mason S, Hill R, Moench L, Rose O, Jefferson T, Fowler J (eds) Proceedings of the 2008 Winter Simulation Conference 951-8 Kaulio, M. (1998) Customer, consumer and user involvement in product development: a framework and a review of selected methods, Total Quality Management and Business Excellence 9(1) pp. 141-49

7. Technology development & co-design 1 Modified nominal group technique for ill- structured problems to synthesise findings : Allow for disagreements over problem definition, potential solutions that overlap or vary widely in specificity. Generate ideas, confirm they are addressing the same problem, analyse the content of the ideas, categorise ideas and clarify the items in each category Bartunek JM & Murningham JK (1984) The nominal group technique: expanding the basic procedure and underlying assumptions Group & Organisation Studies 1984;9(3): 417-432

8. Core themes of palliative care 1.Division of labour 2.Structure & function of care planning 3.Managing rising risk and complexity 4.Boundaries 5.Process of bereavement

9. Grief, Loss and Bereavement from family, professionals and person with dementia Comprehensive Diagnosis and Prognosis Structured, iterative needs assessment & care planning, managing and monitoring Options of treatment/self-care with shared decision making Death End-of-life care Rising support needs Professionals Basic model for dementia

10. Grief, Loss and Bereavement from family, professionals and person with dementia Comprehensive Diagnosis and Prognosis Structured, iterative needs assessment & care planning, managing and monitoring Options of treatment/self-care with shared decision making Death End-of-life care Rising support needs Professionals Quality indicators of good end-of-life care and of “a good death” related to outcome UK example: Liverpool Care Pathway Fidelity to prior and current preferences, symptoms controlled, family satisfaction, appropriate setting (home or hospital), psychosocial and spiritual needs met Prior/current preferences established with carer or family involvement.

11. Grief, Loss and Bereavement from family, professionals and person with dementia Comprehensive Diagnosis and Prognosis Structured, iterative needs assessment & care planning, managing and monitoring Options of treatment/self-care with shared decision making Death End-of-life care Rising support needs Professionals Quality indicators of good palliative care related to process & structure Evidence of increased skill Evidence of care coordination Community orientation UK example: Gold Standard Framework in operation; pain control: use of assessment tools, psycho-social needs met; nutrition assessed, few PEG/NG tubes used; Infection management agreed; Prognostication tools used Training and continuous learning; audit of outcomes Stable leadership & workforce, staff skill mix

12. Full description Iliffe S, Davies N, Vernooij-Dassen M, van Riet Paap J, Sommerbakk R, Mariani E, Jaspers B, Radbruch L, Manthorpe J, Maio L, Engels Y for the IMPACT research team Modelling the landscape of palliative care for people with dementia: a European mixed methods study Submitted to BMC Palliative Care April 2013

13. Field testing Modified Delphi process with SMEs to choose a QI package Use QIs to identify strengths and weaknesses in volunteer services Focus on correcting weaknesses Re-assess using QIs

14. Before & after study In each country we are engaging with: Hospital wards Hospices Care Homes Community services (General practitioners) to test QI packages s.iliffe@ucl.ac.uk