Developing methods to measure the need for palliative care services, with application to the Portuguese health care system

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1 Developing methods to measure the need for palliative care services, with application to the Portuguese health care system Authors Teresa Cardoso, Mónica Oliveira, Ana Barbosa Póvoa (Centre for Management Studies of Instituto Superior Técnico, Technical University of Lisbon, Portugal) Armando Brito de Sá (Faculty of Medicine of Lisbon, University of Lisbon, Portugal) 29 March 2010

2 Palliative care Goals and motivation Proposed models Application to the Results Conclusions Bibliography 2

3 Palliative care According to the WHO definition: Provides relief from pain and other distressing symptoms; Emphasizes life and regards dying as a normal process; Offers a support system to help patients live as actively as possible until death, and to help family to cope with its own bereavement; Is applicable early in the course of illness. For whom? For patients suffering from symptoms associated with progressive, chronic, advanced and/or incurable diseases. Why? Consequence of the Portuguese population ageing. WHO 3

4 Palliative care (cont.) RNCCI National Network of Long Term care MAIN GOAL Provide continuity of care through complementary levels of integrated care to people who depend on others SCOPE Ministry of Health (MS) Ministry of Labour and Social Solidarity (MTSS) Inpatient units Outpatient units COMPOSED BY Health professionals Palliative care units Source: A Rede RNCCI,

5 Goals and motivation Goals of the study Goal 1: Quantify the need for palliative care services using alternative methodologies. Goal 2: Understand why different methods might lead to a wide range of estimates. Goal 3: Measure the gap between the need and the current supply of palliative care services. 5

6 Goals and motivation(cont.) Motivation for the study RESEARCH IN THE PLANNING OF PALLIATIVE CARE SERVICES IS SCARCE There is a lack of data on the utilization of palliative care services; Scarce mortality data is frequently used as a proxy for the need; Production of crude estimates which do not differentiate needs by area or by future needs. 6

7 Proposed models Data collected from the literature 4 th HNS 2005/2006 PROPERTIES: 1. Make use of common and routinely collected data, available in any developed country; 2. Provide estimations on the needs disaggregated by area, age and sex; 3. Uncertainty related to sampling issues and to data inadequacies was statistically modelled through the use of interval estimates. 7

8 Proposed models (cont.) MODEL 1 Diseases related with palliative care Oncological diseases Diseases of the circulatory system Respiratory diseases Neurological disorders Terminal and hereditary diseases, which affect young people 8

9 Proposed models (cont.) MODEL 2A PEOPLE WHO NEED TO RECEIVE PC Individuals who are not accounted for. PEOPLE WHO NEED TO RECEIVE PC AT INPATIENTS UNITS 9

10 Proposed models (cont.) MODEL 2B PEOPLE WHO NEED TO RECEIVE PC PEOPLE WHO NEED TO RECEIVE PC AT INPATIENTS UNITS All the dependent and disabled individuals are accounted for. Estimations on the needs are independent of diseases which cause those needs. 10

11 Proposed models (cont.) Confidence intervals (CI) d number of events n denominator of the rate Measure the uncertainty related to expected data inadequacies. Sources of uncertainty Small samples Reduced number of events Source: Health Statistics Confidence intervals for a Crude Rate,

12 Application to the Inhabitants older than 25 years old Cerebrovascular diseases Oncological diseases Myocardial infarction Rheumatic diseases COPD Sociodemographic characterization Long term disability Chronic diseases 12

13 Results Needs Estimations : MODEL 1 Higher number of individuals needing palliative care services. Higher percentage of individuals needing a bed at an inpatient unit. Higher percentage of individuals needing palliative care services. 13

14 Results (cont.) MODEL 2A Needs Estimations: MODEL 2 Higher number of individuals needing palliative care services in Lisbon and Tagus Valley health region. MODEL 2B Lower number of individuals needing palliative care services in Algarve health region. 14

15 Results (cont.) Comparison between models MODEL 1 MODEL 2A MODEL 2B Average estimations on the needs are LOWER GREATER range of possible outcomes / GREATER variability for palliative care needs Average estimations on the needs are HIGHER Disease specific assessment of palliative care needs Global assessment of palliative care needs 15

16 Results (cont.) Current coverage Coverage in terms of inpatient units 16

17 Conclusions There is a broad gap between need and supply of palliative care services in Portugal, with a reduce supply of these services; Different methods produce a high range of estimates, and further research on methodologies to assess palliative care needs is necessary, so that decision-makers can adequately plan palliative services; Mortality-based models (MODEL 1) are not the best option to assess palliative care needs, and dependency-based models (MODEL 2) may offer a better option; Confidence intervals provide estimates of the quality of point estimates, and show that, in many cases, the quality of information in use is low. 17

18 Bibliography A Rede RNCCI. Disponível na Internet via www. URL: Consultado entre Fevereiro e Maio Associação Nacional de Cuidados Paliativos. Organização de Serviços em Cuidados Paliativos, Recomendações da ANCP; Barbosa A, Neto, IG. Manual de Cuidados Paliativos. In: Neto IG. Princípios e Filosofia dos Cuidados Paliativos. Portugal: Faculdade de Medicina de Lisboa, Centro de Bioética, Núcleo de Cuidados Paliativos; 2006, Currow DC, Abernethy AP, Fazekas BS. Specialist palliative care needs of whole populations: a feasibility study using a novel approach. Palliative Medicine 2004; 18(3): Davies E, Higginson I. Palliative Care: the solid facts. Europe: World Health Organization; Direcção-Geral da Saúde. Programa Nacional de Cuidados Paliativos. Portugal: Divisão de Doenças Genéticas, Crónicas e Geriátricas; Junho Doyle D,Hanks GWC, Cherney N, Calman K. Oxford Textbook of Palliative Medicine. 3rd edition, London: Oxford University Press; Finlay L. UK strategies for palliative care. Journal of the Royal Society of Medicine 2001; 94: Gómez-Batiste X, Porta-Sales J, Paz S, Stjernsward J. Palliative Medicine: Models of Organization. Palliative Medicine 2008a; 5: Guerreiro, I. Até 2016 teremos mais 17 mil camas para cuidados continuados Disponível na internet via www. URL: Health Statistics Confidence intervals for a Crude Rate. Disponível na Internet via www. URL: Consultado entre Junho e Setembro Higginson IJ, Hart S, Koffman J, Selman L, Harding R. Needs Assessments in Palliative Care: An Appraisal of Definitions an Approaches Used. Journal of Pain and Symptom Management 2007; 33(5): Instituto Nacional de Saúde Dr. Ricardo Jorge. Base de dados do Inquérito Nacional de Saúde 2005/2006, INSA Instituto Nacional de Estatística. Estimativas Provisórias de População Residente, 2007; 2008a. Ministério da Saúde. Decreto-lei nº 101/2006: Cria a Rede Nacional de Cuidados Continuados Integrados. Diário da república: I Série-A, nº 109 (6 de Junho de 2006). Oliveira MD, Bevan G. Measuring geographic inequities in the : an estimation of hospital care needs. Health Policy 2003; 66: Santos I. O desafio da comorbilidade para os serviços de saúde. Revista Portuguesa de Clínica Geral 2006; 22: Shanks J, Kheraj S, Fish S. Better ways of assessing health needs in primary care. British Medical Journal 1995; 310: Sousa JC. A Doença Crónica e o desafio da Comorbilidade. Revista Portuguesa de Clínica Geral 2005; 21: Stata Data Analysis and Statistical Software. Disponível na Internet via www. URL: Consultado entre Maio e Julho Stevens A, Gillam S. Needs assessment: from theory to practice. British Medical Journal 1998; 316: Tebbit P. Population-Based Needs Assessment for Palliative Care: A Manual for Cancer Networks. National Palliative Care Development Adviser, National Council for Hospice and Specialist Palliative Care Services. 2004; Wrigth M, Wood J, Lynch T, Clarck D. Mapping Levels of Palliative Care Development: A Global View. Journal of Pain and Symptom Management 2008; 35 (5): Zurro AM, Pérez JFC. Textbook of Primary Care. Quinta Edicion, Volumen II. Madrid: Elsevier;

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