Lima, L. (Liliana) de
- Publications
- item.page.relationships.isContributorAdvisorOfPublication
- item.page.relationships.isContributorOfPublication
15 results
Search Results
Now showing 1 - 10 of 15
- Mapping pediatric palliative care development in the WHO-European Region: children living in low-middle income countries are less likely to access it(Elsevier, 2020) Pons-Izquierdo, J.J. (Juan José); Marston, J. (Joan); Garralda, E. (Eduardo); Centeno, C. (Carlos); Arias-Casais, N. (Natalia); Lima, L. (Liliana) de; Rhee, J.Y. (John Y.); Downing, J. (Julia); Ling, J. (Julie); Chambers, L. (Lizzie)Context: Approximately 170,000 children in need of palliative care die every year in Europe without access to it. This field remains an evolving specialty with unexplored development. Objectives: To conduct the first regional assessment of pediatric palliative care (PPC) development and provision using data from the European Association for Palliative Care atlas of palliative care 2019. Methods: Two surveys were conducted. The first one included a single question regarding PPC service provision and was addressed by European Association for Palliative Care atlas informants. The second one included 10 specific indicators derived from an open-ended interview and rating process; a specific network of informants was enabled and used as respondents. Data were analyzed and presented in the map of the figure. Results: Data on PPC service provision were gathered from 51 of 54 (94%) European countries. Additional data were collected in 34 of 54 (62%) countries. A total of 680 PPC services were identified including 133 hospices, 385 home care services, and 162 hospital services. Nineteen countries had specific standards and norms for the provision of PPC. Twenty-two countries had a national association, and 14 countries offered education for either pediatric doctors or nurses. In seven countries, specific neonatal palliative care referral services were identified. Conclusion: PPC provision is flourishing across the region; however, development is less accentuated in low-to-middle-income countries. Efforts need to be devoted to the conceptualization and definition of the models of care used to respond to the unmet need of PPC in Europe. The question whether specialized services are required or not should be further explored. Strategies to regulate and cover patients in need should be adapted to each national health system.
- How to Advance Palliative Care Research in South America? Findings From a Delphi Study(Elsevier, 2023) Hui, D. (David); Rodriguez, L.H. (Liliana Haydee); Tripodoro, V.A. (Vilma A.); Angelis-Nascimento, M.S. (Maria Salete) de; Crispim, D.H. (Douglas Henrique); Paiva, C.E. (Carlos Eduardo); Ribeiro-Paiva, B.S. (Bianca Sakamoto); Lima, L. (Liliana) de; Zimmerman, C. (Camilla); Pérez-Cruz, P. (Pedro); Pastrana, T. (Tania); Bruera, E. (Eduardo); Riveros-Ríos, M. (Miriam); Ruiz-Ospina, P.M. (Paola Marcela); Rodríguez-Núñez, A. (Alfredo)Context. Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. Objectives. To develop a set of recommendations to advance PC research in SA. Methods. Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open- ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. Results. 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public poli- cies, education and prognosis were defined as the most relevant. Conclusion. Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resour- ces and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.
- Brief manual on health indicators monitoring global palliative care development(IAHPC Press, 2019) Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Centeno, C. (Carlos); Arias-Casais, N. (Natalia); Lima, L. (Liliana) de; López-Fidalgo, J. (Jesús); Rhee, J.Y. (John Y.)
- Atlas de cuidados paliativos de Latinoamérica 2020 (2ª ed.)(IAHPC Press, 2021) Steijn, D. (Danny) van; Sánchez-Cárdenas, M. (Miguel); Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Centeno, C. (Carlos); Lima, L. (Liliana) de; Pastrana, T. (Tania)Los cuidados paliativos comenzaron en el Reino Unido durante la década de los sesenta como respuesta a la falta de atención por el sufrimiento físico y emocional de los pacientes con enfermedades incurables y sus seres queridos. Este movimiento comenzó a globalizarse progresivamente, pero aún hoy en muchos lugares del mundo, hospitales, universidades y sistemas de salud prestan mínima atención al enorme problema del sufrimiento asociado a la enfermedad. La enseñanza de las ciencias de la salud, los sistemas sanitarios y hospitales enfatizan enfermedades más que enfermos. Los cuidados paliativos no han recibido la atención ni los fondos necesarios en comparación a disciplinas más jóvenes pero dedicadas al manejo de enfermedades. Una de las formas más útiles de ayudar al desarrollo de los cuidados paliativos es monitorizar la existencia de programas y el progreso de los cuidados paliativos en cada uno de los países de la región. Los datos son mucho más importantes que la retórica para motivar cambio. El Atlas de Cuidados Paliativos en Latinoamérica, y en especial esta segunda edición, demuestra diferencias importantes en el desarrollo de programas y sin duda será muy útil para tanto los líderes paliativos como para los líderes sanitarios, permitirá la adopción de conductas más exitosas que ayuden a desarrollar cuidados paliativos en Latinoamérica y ayudará a unificar futuros criterios para los cuidados paliativos primarios, secundarios y terciarios. Este gran equipo de voluntarios ha trabajado desinteresadamente para generar información que no está disponible en ningún otro registro. Muchos miles de pacientes y sus familias se beneficiarán del gran esfuerzo de este grupo y por ello estoy profundamente agradecido a los colegas y organizaciones que nos permiten un conocimiento profundo del estado de los cuidados paliativos en nuestra región.
- Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years(SAGE Publications, 2020) Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Centeno, C. (Carlos); Arias-Casais, N. (Natalia); Lima, L. (Liliana) de; Radbruch, L. (Lukas); López-Fidalgo, J. (Jesús); Rhee, J.Y. (John Y.)Background: Service provision is a key domain to assess national-level palliative care development. Three editions of the European Association for Palliative Care (EAPC) Atlas of Palliative Care monitored the changes in service provision across Europe since 2005. Aim: To study European trends of specialized service provision at home care teams, hospital support teams, and inpatient palliative care services between 2005 and 2019. Design: Secondary analysis was conducted drawing from databases on the number of specialized services in 2005, 2012, and 2019. Ratios of services per 100,000 inhabitants and increase rates on number of services for three periods were calculated. Analysis of variance (ANOVA) analyses were conducted to determine significant changes and chi-square to identify countries accounting for the variance. Income-level and sub-regional ANOVA analysis were undertaken. Setting: 51 countries. Results: Forty-two countries (82%) increased the number of specialized services between 2005 and 2019 with changes for home care teams (104% increase-rate), inpatient services (82%), and hospital support teams (48%). High-income countries showed significant increase in all types of services (p < 0.001), while low-to-middle-income countries showed significant increase only for inpatient services. Central–Eastern European countries showed significant improvement in home care teams and inpatient services, while Western countries showed significant improvement in hospital support and home care teams. Home care was the most prominent service in Western Europe. Conclusion: Specialized service provision increased throughout Europe, yet ratios per 100,000 inhabitants fell below the EAPC recommendations. Western Europe ratios’ achieved half of the suggested services, while Central–Eastern countries achieved only a fourth. High-income countries and Western European countries account for the major increase. Central–Eastern Europe and low-to-middle-income countries reported little increase on specialized service provision.
- An analysis of palliative care development in Africa: a ranking based on region-specific macro-indicators(Elsevier, 2018) Garralda, E. (Eduardo); Namisango, E. (Eve); Centeno, C. (Carlos); Lima, L. (Liliana) de; López-Fidalgo, J. (Jesús); Rhee, J.Y. (John Y.); Powell, R.A. (Richard A.); Luyirika, E. (Emmanuel)CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries. OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators. METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia. CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
- Redefining palliative care-a new consensus-based definition(Elsevier, 2020) Goh, C. (Cynthia); Wee, B. (Bee); Connor, S. (Stephen); Leng, M. (Mhoira); Pettus, K. (K.); Moine, S. (Sébastien); Gómez-García, W. (Wendy); Buitrago, R. (Rosa); Harding, R. (Richard); Marston, J. (Joan); Yong, J. (J.); Centeno, C. (Carlos); Davaasuren, O. (Odontuya); Spruijt, O. (Odette); Knaul, F. (Felicia); Larkin, P. (Phillippe); Cege-Munyoro, E. (Esther); Ali, Z. (Zipporah); Lima, L. (Liliana) de; Radbruch, L. (Lukas); Woodruff, R. (Roger); Venkateswaran, C. (Chitra); Burla, C. (Claudia); Wenk, R. (Roberto); Cleary, J. (Jim); Blanchard, C. (Charmaine); Callaway, M. (Mary); Puchalski, C. (C.); Spence, D. (Dingle); Bhatnaghar, S. (Sushma); Pastrana, T. (Tania); Foley, K. (K.); Bruera, E. (Eduardo); Downing, J. (Julia); Rajagopal, M.R. (M. R.); Osman, H. (Hibah); Khan, Q.T. (Quach T.); Luyirika, E. (Emmanuel)Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.
- Atlas of Palliative Care in the Eastern Mediterranean Region(IAHPC, 2017) Tfayli, A. (Arafat); Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Rihan, A. (Alaa); Centeno, C. (Carlos); Lima, L. (Liliana) de; Rhee, J.Y. (John Y.); Osman, H. (Hibah)BACKGROUND Information on the state of palliative care development in Eastern Mediterranean countries is scant. This study is the first of its kind in conducting a systematic descriptive analysis of palliative care development in the region. AIMS To describe the current status of palliative care in the Eastern Mediterranean Region according to the World Health Organization (WHO) public health strategy for integrating palliative care: policies, opioid accessibility, services availability, and educational programs plus palliative care professional activity. METHODS Surveys were sent by email to two leaders of palliative care in each country. A follow-up telephone interview was conducted with one leader from each available country. A scoping review of the state of palliative care in Eastern Mediterranean countries using the WHO palliative care public health strategy was conducted using PubMed, CINAHL, Embase, and Google Scholar. RESULTS Sixty eight percent (15/22) of countries in the EMRO region responded to the survey. Of the fifteen participating countries, Saudi Arabia had the highest number of total palliative care programs across the Eastern Mediterranean region, followed by Egypt and Jordan, while Iraq and the Occupied Palestinian Territories reported no palliative care programs. Saudi Arabia, Iran, and Lebanon have official licensing programs in palliative care for physicians, and a further four countries (Egypt, Jordan, Oman, and Qatar) have developed other advanced training programs (such as Masters or Diploma). In terms of education, Jordan, Oman, and Lebanon report having at least one medical school teaching palliative care as an independent subject, though four additional countries (Egypt, Kuwait, Pakistan, and Tunisia) report teaching palliative care integrated into other subjects. There are no nursing schools in the region that teach palliative care as an independent course. In terms of policies, only Tunisia has a stand-alone national palliative care plan. However, 73% (11/15) of participating countries reported having a section for palliative care within their national cancer plan/strategy. In terms of medicine availability, Saudi Arabia reported the highest opioid consumption in morphine equivalence, excluding methadone, at 33.55 mg/capita/year in 2015, with the next highest being Kuwait at 5.59 mg/capita/year. Finally, in terms of professional activity, Morocco, Tunisia, Lebanon, Jordan, Saudi Arabia, Kuwait, and Iran reported having national palliative care associations, though not all are currently active. CONCLUSION Palliative care remains underdeveloped in most countries. Efforts and resources should be mobilized to address the gaps identified to ensure that palliative care becomes accessible across the region.
- Documento de posición oficial sobre la promoción global de Cuidados Paliativos: recomendaciones del Grupo Internacional Asesor PAL-LIFE de la Academia Pontificia de la Vida, Ciudad del Vaticano(Mary Ann Liebert, 2018) Mosoiu, D. (Daniela); Pettus, K. (K.); Yong, J. (J.); Garralda, E. (Eduardo); Sitte, T. (T.); Centeno, C. (Carlos); Bruera, E. (E.); Callaway, M. (M.); Lima, L. (Liliana) de; Puchalski, C. (C.); Comoretto, N. (Nunciata); Rhee, J.Y. (John Y.); Foley, K. (K.); Alsirafy, S. (S.); Rajagopal, M.R. (M. R.); Luyirika, E. (Emmanuel)Contexto: La Academia Pontificia de la Vida (PAV) es una institución académica de la Santa Sede (Vaticano) cuyo objetivo es promover una visión católica de la ética biomédica. La PAV invitó a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estratégicas para el desarrollo global de CP (“Grupo PAL-LIFE”). Diseño: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidió a los participantes que identificasen los grupos de interés o instituciones claves para la promoción de CP y que propusieran, para cada uno de ellos, recomendaciones estratégicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones más importantes. En una última fase, al grupo de expertos se le solicitó la jerarquización por importancia de los grupos clave en una escala de 1 a 13. También se solicitaron sugerencias concretas para la implementación de las recomendaciones. Mediante análisis clúster se ordenaron los grupos de interés en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las más importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Políticos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificación adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementación de las recomendaciones internacionales sobre CP. También se presentan recomendaciones para los ocho grupos clave restantes. Discusión: Este documento representa la posición oficial de la PAV en lo que respecta a estrategias de promoción para el desarrollo de los CP en el mundo.
- White paper for global Palliative Care advocacy: recommendations from a PAL-LIFE expert advisory Group of the Pontifical Academy for Life, Vatican City(Mary Ann Liebert, 2018) Mosoiu, D. (Daniela); Pettus, K. (K.); Yong, J. (J.); Garralda, E. (Eduardo); Sitte, T. (T.); Centeno, C. (Carlos); Bruera, E. (E.); Callaway, M. (M.); Lima, L. (Liliana) de; Puchalski, C. (C.); Comoretto, N. (Nunciata); Rhee, J.Y. (John Y.); Foley, K. (K.); Alsirafy, S. (S.); Rajagopal, M.R. (M. R.); Luyirika, E. (Emmanuel)Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC (“PAL-LIFE group”). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.