1. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Needs assessment for cancer and non-cancer patients at population, district or setting level March 8 th, 2011 Dr. Carles Blay & Ms. Marisa Martínez-Muñoz.

2. Institut Català d’Oncologia The individual clinical perspective Identifying patients in need of palliative care ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

3. Institut Català d’Oncologia McNamara, 2006 Minimal: 50%, Mid-range: 55.5 %, High range: 89.4% ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

4. Institut Català d’Oncologia Characteristics of terminally ill situation Chronic advanced, progressive and incurable disease Limited response to specific treatment Limited life prognosis Multiple, multifactorial, changing, intense and variable symptoms Emotional impact in patient, family and teams Frequent crisis of needs and demands Frequent ethical dilemmas ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

5. Institut Català d’Oncologia NHS GPs Gold Standards Framework (PIG) ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

6. Institut Català d’Oncologia Death trajectories. Lunney JR, et al. Profiles of older Medicare decedents. J Am Geriatr Soc 2002;50:1108-1112. ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

7. Institut Català d’Oncologia Copyright ©2008 BMJ Publishing Group Ltd. Murray, S. A et al. BMJ 2008;336:958-959 The three main trajectories of decline at the end of life ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

8. Institut Català d’Oncologia Murray, S. A et al. BMJ 2008;336:958-959 ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

9. Institut Català d’Oncologia Murray, S. A et al. BMJ 2008;336:958-959 ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

10. Institut Català d’Oncologia Identifying patients in need of palliative care in health services ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

11. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes NHS GPs Gold Standards Framework Prognostic Indicator Guidance

12. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes NHS GPs Gold Standards Framework Prognostic Indicator Guidance

13. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes NHS GPs Gold Standards Framework Prognostic Indicator Guidance

14. Institut Català d’Oncologia NHS GPs Scotland SPICT ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

15. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes NHS GPs Scotland SPICT

16. Institut Català d’Oncologia Identifying patients with chronic advanced illnesses and limited life prognosis 1.Select patients with progressive and advanced chronic disease(s) 2.Carry out NECPAL test ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

17. Institut Català d’Oncologia Identifying advanced-terminally ill patients (ATIPs) 1.Surprise question 2.Choice/demand of LTE or need of palliative intervention, explicitly or implicitly, from patient, family or team 3.General clinical indicators of severity and extreme frailty: nutritional and functional decline and geriatric syndromes in last 6 months 4.Emotional distress, use of resources in last 6 months (multiple admissions, emergency, intense/complex care) and co- morbidity 5.Specific indicators of severity and progression for selected pathologies ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

18. Institut Català d’Oncologia Identifying advanced-terminally ill patients (ATIPs) 1.Surprise question to the team (doctor and nurse together): Would you be surprised if this patient were to die in the next 12 months? ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

19. Institut Català d’Oncologia 2.Choice or demand of limited therapeutic effort Need of palliative intervention Explicitly or implicitly From patient, family or team* * In Mediterranean/Latin context, where patient autonomy is less apparent than in Anglo-Saxon/Nord European one, is frequent that family or team members demand LTE or palliative intervention, or both ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Identifying advanced-terminally ill patients (ATIPs)

20. Institut Català d’Oncologia 3. General clinical indicators of severity and extreme frailty: –nutritional decline: albumin, weight –functional decline: Barthel Index –geriatric syndromes: persistent ulcers, repeated systemic infections, acute confusional syndrome, persistent dysphagia and falls 4. Others indicators: –Emotional distress –use of resources: multiple admissions, emergency, intense/complex care in last 6 months –Co-morbidity Rapid decline, progressive, persistent and not related to intercurrent processes ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Identifying advanced-terminally ill patients (ATIPs)

21. Institut Català d’Oncologia 5. Specific indicators of severity and progression for selected pathologies: –Cancer –Chronic pulmonary disease –Chronic cardiac disease –Chronic neurologic disease Stroke Multiple Sclerosis, Parkinson's Disease, Motor Neurone Disease –Serious chronic hepatic disease –Serious chronic renal disease –Dementia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Identifying advanced-terminally ill patients (ATIPs)

22. Institut Català d’Oncologia Advantages 1.Easy, understandable, applicable in all settings 2.Identify needs 3.High sensitivity NECPAL: assessment and use criteria Limitations 1.Low specificity 2.Uncertain prognostic 3.Does not define indication of specific resources Recommendations 1.To be used as a identifying method 2.Associated to other specific instruments 3.Start up palliative intervention (no dichotomy with other measures) ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

23. Institut Català d’Oncologia The population perspective ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

24. Institut Català d’Oncologia Needs assessment and coverage McNamara, Rosenwax, D’Arcy A Method for Defining and Estimating the Palliative Care Population. J Pain and Sympton manage July 2006; 32: 5-12 Currow D, Palliat Med, 2004 Stjernsward J, Gómez-Batiste X, Textbook of Palliative Medicine, Elsevier, NY, 2008 Gómez-Batiste X, Stjernsward J, Textbook of Palliative Medicine, Elsevier, NY, 2008 Higginson IJ, JPSM, 2007 Gold Standards Framework, RCGP, 2005 Palliative Care Australia, 2003 Palliative Care National Strategy, Spain, 2007 ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

25. Institut Català d’Oncologia Causes of advanced-terminally ill (*)(**) Cancer 25% Chronic diseases (non-cancer) CCF Renal I Hepatic I COPD Neurodegenerative (3) Alzheimer HIV/AIDS 30% Chronic diseases (acute episodes) Acute decompensation with previous crisis episodes 5-15% Total60-75% (*): in % of mortality (**): McNamara, 2006, mid-range estimation ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

26. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes MortalityPrevalence Optimal direct coverage of direct PC intervention Number of patients Cancer2250 (25%) 560 (mean survival 3m) 60%1350 Non-cancer3150 (35%) High: 3150 (mean survival 1y) Low: 1575 (mean survival 6m) 30-60% (*) Direct: 945 Punctual: 945 Cancer/non- cancer 1/1,5-21/5-8- Total54002150-3725- Direct: 2300 Direct + punctual: 3400 Mortality, prevalence and estimated number of patients in need of specific PC intervention /10 6 (*). Updated 140308 (*) Global mortality: 9000 people/10 6 (**) 30% Direct coverage + 30% flexible interventions WHOCC 2007

27. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Conceptual model of level of needs of patients with terminal or advanced-stage diseases. Palliative Care Australia. A guide to palliactive care Service development: a population based approach 2003, www.pallcare.org

28. Institut Català d’Oncologia Other perspectives on needs 10% population > 65: co-morbidity and dependency, 70% of health-care cost 7-10% population > 65: dementia 5% > 65: nursing homes 30-35% of beds in acute hospitals: patients in need of palliative care (advanced-terminally ill patients) 70% admitted in medical oncology wards: advanced-terminally ill patients 70% of advanced geriatric patients: frequent use of emergency services and acute beds 50-70% nursing homes: co-morbidity + dependency + dementia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

29. Institut Català d’Oncologia Prevalence of patients in need of palliative care Hospitals: 30-35% Nursing homes: 50-60% Community: 3/1000 ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

30. Institut Català d’Oncologia McNamara, 2006 Minimal: 50%, Mid-range: 55.5 %, High range: 89.4% ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

31. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes MortalityPrevalence Optimal direct coverage of direct PC intervention Number of patients Cancer 1800-2250 (20-25%) 450-61260-70%1080-1575 Non-cancer 2700-3600 (30-40%) 1350-180030-60% (*) 810-1080 to 1620-2160 Cancer/non- cancer 1/1,5-21/6-1/8- Total 4500-5850 (50-65%) 1800-2412- Direct 1890-2655 Direct + punctual 2700-3735 Mortality, prevalence and direct coverage estimation per 10 6 inhabitants in Spain (*) (*) Global mortality: 8950 people/10 6 (**) 30% Direct coverage + 30% flexible interventions Source: Modified from SECPAL, Ministry of Health Report, 2007

32. Institut Català d’Oncologia 60-75% of population will die after a period of progressive chronic disease ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

33. Institut Català d’Oncologia In Catalonia, per 200.000 inhabitants, each year... Die 1.800 people 1.200-1.400 (60-75%) due to progressive chronic diseases (25% cancer, 35-45% non-cancer) Will have 450 prevalent terminally ill patients (60- 80 cancer / 270-90 non-cancer) 340 old people with comorbidity and dependency 300 people with dementia 1.500 in geriatric home cares ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

34. Institut Català d’Oncologia Simplified method of needs assessment for terminally ill patients Source: XGB WHOCC, 2008 ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Mortality 1.Global mortality (9000/10 6 = 9/1000) 2.60% (5400/10 6 = 5-6/1000) for progressive chronic diseases  25% (2250) cancer  35% (3150) non-cancer 3.Non-cancer/cancer = 1,4/1 Prevalence 1.Cancer (estimated survival 3 m): mortality = 2250/4 (12/3) = 560 2.Non-cancer (mean estimated survival 9 m): mortality = 3150/1,33 (12/9) = 2368 3.Total rate = 2920 terminally ill patients/10 6 = 2,9/1000 inhabitants 4.Non-cancer/cancer = 4,2/1 Optimal direct coverage (/10 6 and depending on mortality) 1.Cancer: 1350 2.Non-cancer: 945 (direct) + 945 (flexible interventions) = 1900 3.Total: 3250 Per 10 6 inhabitants...

35. Institut Català d’Oncologia Estimation scenario Source: XGB WHOCC ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Chronic Diseases Mortality / Total Prevalence Cancer22556 Other chronic diseases 315237 Total Low-High 540293 Per sector of 10 5 inhabitants...

36. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Chronic Diseases Mortality / Total Prevalence Cancer4511 Other chronic diseases 6348 Total Low-High 10859 Per Primary Care district of 20.000 inhabitants... Estimation scenario Source: XGB WHOCC

37. Institut Català d’Oncologia Per GP + nurse, 2000 inhabitants... ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Chronic Diseases Mortality / Total Prevalence Cancer4-51-2 Other chronic diseases 6-74-6 Total Low-High 10-125-8 Estimation scenario Source: XGB WHOCC

38. Institut Català d’Oncologia Prevalence of advanced-terminally ill patients (ATIPs) in a district (Osona-Catalonia) Research project ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

39. Institut Català d’Oncologia Objectives Validation of applicability of proposed strategy for identifying ATIPs using the NECPAL test in the community Determine prevalence of ATIPs in the district of Osona (Primary Care > Home care > Socio- health > Hospital) Study prognostic capacity (exploratory objective) ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

40. Institut Català d’Oncologia In Primary Care ATIPs NECPAL test 1. Previous individual review + 2. GP and nurse together ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

41. Institut Català d’Oncologia Prognostic capacity of NECPAL test Research project ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

42. Institut Català d’Oncologia Objectives Determine prognostic capacity of NECPAL test in selected pathologies (n≈1000) Determine prevalence of ATIPs in selected settings (Primary Care < Hospitals: metropolitan, urban and regional) Validation of applicability of proposed strategy for identifying ATIPs using NECPAL test in selected settings ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

43. Institut Català d’Oncologia Practice Exercice NECPAL test as a Needs-Assessment Instrument 1.Feasibility application 2.Identification of: Target population: mortality and prevalence in a demographic setting Target population (prevalence, frequency) in health services’ settings: hospitals, community, nursing homes Difficulties ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

44. Institut Català d’Oncologia Practice Exercice NECPAL test as a Needs-Assessment Instrument ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes GENERAL POPULATION POPULATION IN NEED OF PALLIATIVE CARE (COMMUNITY AND SETTINGS) TARGET POPULATION FOR PALLIATIVE CARE SERVICES TARGET POPULATION FOR PALLIATIVE CARE SERVICES IN THE SHORT TERM MORTALITY PREVALENCE COMPLEXITY X

45. Institut Català d’Oncologia Thank you very much! ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

46. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes. The ‘Qualy’ End of Life Care Observatory WHO Collaborating Centre for Public Health Palliative Care Programmes whocc.info@iconcologia.net +34 93 260 77 36 ICO l’Hospitalet Hospital Duran i Reynals Gran Via de l’Hospitalet, 199-203 08908 l’Hospitalet de Llobregat Institut Català d’Oncologia