1. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Research Strategies March 11 th, 2011 Ms. Marisa Martínez.

2. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Introduction (I) Framework Focused on the initial foundation measures Based on the experience of the WHO Collaborating Centre for Public Health Palliative Care Programs at the Catalan Institute of Oncology In the initial phase of programs and services is crucial to select: –Indicators –Mechanisms of evaluation and improvement

3. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Introduction (II) Indicators Advisable to collect a group of basal data that could be easily collected and monitored to build up a set of indicators: –Pain scores –Use of resources: Emergency Services Length of stay –Opioid consumption Mechanisms of evaluation and improvement Research Strategies

4. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (I) Components of PCPHPs Clear leadership and aims Needs and context Assessment Clear model of care and intervention and definition of the target patients General measures in conventional services (Specially Primary Care) Specialist services in settings Sectorised networks with coordination, continuing and emergency care Education and training at all levels Research Planning Availability and accessibility of opioids and essential drugs Legislation, standards, budget and models of funding and purchasing Evaluation and improvement of quality Evaluation of results, indicators Action plans at short, mid and long term Social implication: volunteers, social involvement in the cultural, social and ethical debates around the end of life

5. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (II) Foundation measures of PHPCPs Context analysis and needs assessment Defining Target patients / population Leadership Involving Stakeholders Statements: Mission, vision, and values Model of care and intervention Models of organisation: levels, settings, scenarios Measures in conventional services Legislation Opioid availability and accessibility Financing and purchasing service’s models Initial implementation of services Indicators, standards, and quality improvement Training: clinical, organisational, leadership Identification of resistances, barriers, and possible alliances Advocacy Indicators for follow up

6. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (III) Basal data and research strategies Several ways of conducting evaluations, either quantitative or qualitative Indicators must be chosen according to: –Relevance with quality –Feasibility –Ease to be retrieved, modified and monitored Key issues to be monitored: –Coverage –Quality –Accessibility –Equity

7. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (IV) Basal data and research strategies Coverage can be related to: –Proportion of patients attended by specialist services (direct coverage) –Patients better assisted in conventional services (indirect coverage) –Districts and care settings having available services (geographical or settings coverage) Quality of services can be measured focusing on : –Effectiveness –Efficiency –Cost –Cost/effectiveness –Satisfaction Opioid consumption is a cornerstone of results

8. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (V) Dimensions of PCPHPs and elements of a qualitative analysis

9. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Programmes (VI) Quantitative Indicators of PHPCPs (WHOCC/ICO, 2009)

10. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (I) Foundation measures (elements) Institutional commitment Context analysis Leadership Defined type of service Target patients and services Internal consensus Mission, vision, principles and values Model of care and intervention Building the team Training Starting clinical activities External consensus: stakeholders, target services, criteria of intervention Indicators, standards, and quality improvement Follow up and review

11. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (II) Frequent Process measures and Activities of PC Services Care of Patients (inpatient, outpatients, home, day care, phone/online support) Care of Families and Bereavement Needs assessment (individuals, context) Advance care planning Continuing care and case management Liaison of resources Support of other teams Team work: meetings, roles, support, relations, climate Register and documentation Evaluation of results Internal training External training Research and publications Quality assessment and improvement Volunteers Advocacy Links to society

12. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (III) Aims and actions at short-term Context analysis Strategic planning Building the team Training Internal consensus External consensus Starting activities Budgeting Designing Evaluation

13. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (IV) Context analysis Demographic and general characteristics of the area and care settings Background Mapping the existing services and resources Qualitative analysis Basal surveys Identification of resistances, barriers and possible alliances

14. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (V) Context analysis Demographic and general characteristics of the area and care settings –Quantitative needs assessment: data or estimation of mortality and prevalence by cancer and other chronic progressive diseases, global or by areas –Ageing –Social, economic, cultural aspects (immigration, deprivation, …) Background –Previous initiatives and early results Mapping the existing services and resources –Prevalence of advanced patients –Demand of specialist PC services –Target services: primary care, oncology, geriatrics, internal medicine, nursing homes, –Services usually involved in high demand: emergencies services

15. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (VI) Context analysis Qualitative analysis: evaluation of the main relevant dimensions, demands and opinions of patients, relatives or professionals –Exploring dimensions (symptom control, emotional care, care of the families, continuing care) with a SWOT analysis –Focal groups, Focus groups or Nominal groups of professionals, patients or relatives Basal survey: some simple basal studies can be very helpful describing the situation and also crucial to build up indicators to monitor progress of services and to evaluate its impact –Needs of patients (prevalence of symptoms, severity of key symptoms, …) –Demands and expectations of patients and professionals –Use of key drugs (opioids) and shifts in the proper use of drugs –Use of resources (emergency services, length of stay, admissions,…) –Cost of resources in the last weeks or months

16. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (VII) Designing evaluation Model of self assessment of Care Dimensions

17. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (VIII) Designing evaluation Model of self assessment of Organizational Dimensions

18. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (IX) Designing evaluation Indicators, standards and quality improvement Setting up indicators and standards will help to : –Evaluate progress –Give credibility and accountability Initially we can use basic nuclear indicators of services and define achievable standards The expected outcomes of a service can be measured by some very sensitive indicators even in the initial phases: –Changes in the overuse of resources (emergency services) –Effectiveness –Satisfaction of patients, relatives or other services

19. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (X) Designing evaluation Basic criteria for indicators of PC Specialist Services (WHOCC)

20. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (XI) Designing evaluation Multicentre research Atmosphere of cooperation Culture of evaluation Offers global results Can be simple Select key easy issues Select easy methodologies

21. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Services (XII) Designing evaluation Multicentre research StudyTypeN servicesN patientsKey results Dying of cancerBasal study: Charatceristics sndUse of resources last month of life cancer pats 4 Districts396Emergencies, length of stay Use of opioids by PCS… 96….Oral morphine the most used Sedation… Initial multicenter studies CATPAL

22. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (I) Published articles Effectiveness, efficiency and satisfaction Evaluations of the Catalonia WHO Demonstration Project: Methods External evaluation of indicators (Suñol et al, 2008) SWOT nominal group of health-care professionals (Gomez-Batiste et al, 2007) Focal group of relatives (Brugulat et al, 2008) Benchmark process (2008) (Gomez-Batiste et al, 2010) Efficiency (Serra-Prat et al 2002 & Gomez-Batiste et al 2006) Effectiveness (Gomez-Batiste et al, J Pain Symptom Manage 2010) Satisfaction of patients and their relatives (Survey CatSalut, 2008)

23. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (II) Published articles Global quantitative analysis

24. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (III) Published articles Effectiveness

25. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (IV) Published articles Efficiency

26. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (V) Published articles Qualitative evaluation

27. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (VI) Published articles Indicators

28. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (VII) Published articles In press Structure, patients’ characteristics, organisational outputs, and basic outcomes of Palliative Care Hospital Support Teams in Spain An observational, multicenter survey, and prospective, quasi experimental, pre-post, cohort study of advanced cancer patients Albert Tuca-Rodriguez, Xavier Gómez-Batiste, Jose Espinosa, Marisa Martínez-Muñoz, et al.. February 2011

29. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Evidence (VIII) Published articles A perfect example

30. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Proposed methodology (I) Self assessment of PCPHPs (specific)

31. Institut Català d’Oncologia ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes Proposed methodology (II) Assessment (general) Indicators Relevance Feasibility Information source –Review –Descriptive approach: Systematic registration of data and periodic evaluation Research studies –Quasi-experimental approach (to evaluate interventions) Systematic registration of data and periodic evaluation Research studies

32. Institut Català d’Oncologia Practice Exercice I PCPHP Planning Research Strategies for 2 years 1.Select indicators: RESULTS 2.Relevance 3.Feasibility 4.Strategies to collect BASAL DATA for selected indicators ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

33. Institut Català d’Oncologia Practice Exercice II Health Services’ Settings Planning Research Strategies for 2 years 1.Select indicators: RESULTS 2.Relevance 3.Feasibility 4.Strategies to collect BASAL DATA for selected indicators ICO DiR. The ‘Qualy’ End of Life Care Observatory - WHO Collaborating Centre for Public Health Palliative Care Programmes

34. 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