DINAMO aims to enhance advanced training and research to optimise home palliative care in Portugal. Led by Dr. Barbara Gomes (Research Fellow), this five-year project is funded by the Calouste Gulbenkian Foundation. The project comprises two work streams:
1. Building research capacity by supporting postgraduate training scholarships and a research fellowship;
2. Developing research and evidence on home palliative care.
- To review the evidence on the practice and research of home palliative care;
- To estimate current and future needs for home palliative care;
- To elicit preferences of terminally ill patients and families in Portugal for aspects of home palliative care;
- To develop and pilot a new model of home palliative in Portugal and the methods to evaluate it;
- To evaluate the effectiveness and cost-effectiveness of the proposed model of home palliative care in Portugal.
- Dr Barbara Gomes - Principal Investigator
- Professor Irene J. Higginson - Scientific Director
- Professor Pedro L. Ferreira (Director of CEISUC)
- Maja de Brito (Research assistant)
- Dr Helder Aguiar (MSc student, 2011-2012)
- Dr Ana Lacerda (MSc student, 2012-2013)
- Dr Vera P. Sarmento (MSc student, 2012-2013)
- Dr Duarte Soares (MSc student, 2013-2014)
- Dr Rita Canario (MSc student, 2013-2014)
- Dr Catarina Ribeiro (MSc student, 2015-2016)
- Dr Diogo Martins Branco (MSc student, 2015-2016)
CONTACT US for more information.
Publications in peer-review journals
Martins-Branco D, Lopes S, Canario R, et al. Factors associated with the aggressiveness of care at the end of life for patients with cancer dying in hospital: a nationwide retrospective cohort study in mainland Portugal. ESMO Open 2020;0:e000953. doi:10.1136/esmoopen-2020-000953
Ribeiro C, Santos R, Correia P, Maddocks M, Gomes B. Resistance training in advanced cancer: a phase II safety and feasibility trial—home versus hospital. BMJ Support Palliat Care. Published Online First: 13 Aug 2020. doi: 10.1136/bmjspcare-2020-002230
Gomes B, de Brito M, Sarmento VP, et al. Valuing attributes of home palliative care with service users: a pilot discrete choice experiment. J Pain Symptom Manage. Published Online First: 7 Aug 2017. doi: 10.1016/j.jpainsymman.2017.05.005
Sarmento VP, Gysels M, Higginson IJ, et al Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers BMJ Supportive & Palliative Care Published Online First: 23 February 2017. doi: 10.1136/bmjspcare-2016-001141
Sarmento V, Higginson IJ, Ferreira PL, Gomes B. Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world. Palliat Med 2016;30(4):363–373. doi:10.1177/0269216315594974
da Silva Soares D, Nunes CM, Gomes B. Effectiveness of Emergency Department Based Palliative Care for Adults with Advanced Disease: A Systematic Review. J Palliat Med 2016, 19(6): 601-609. doi:10.1089/jpm.2015.0369
Gomes B. Palliative Care: If it makes a difference, why wait?J Clin Oncol 2015;33(13):1420-1
Brito M, Gomes B. Non-cancer palliative care in the community needs greater interprofessional collaboration to maintain coordinated care and manage uncertainty. Ev Based Nurs 2015 Feb 19. pii: ebnurs-2014-102029. doi: 10.1136/eb-2014-102029. [Epub ahead of print]
Gomes B, Calanzani N, Higginson IJ. Benefits and costs of home palliative care compared to usual care for patients with advanced illness and their family caregivers. JAMA 2014, 12;311(10):1060-1
Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews 2013, Issue 6, Art. No.: 10.1002/14651858.CD007760,pub2
Gomes B, Sarmento VP, Ferreira PL, Higginson IJ. [Epidemiological study of place of death in Portugal in 2010 and comparison with the preferences of the Portuguese population]. Acta Med Porto 2013;26(4):327-34. [Abstract in English, article in Portuguese]
Gomes B, Higginson IJ. Evidence on home palliative care: Charting past, present and future at the Cicely Saunders Institute - WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation. Progress Palliat Care 2013;21(4):204-213
Higginson IJ, Sarmento VP, Calanzani N, Benalia H, Gomes B. Dying at home - is it better: A narrative appraisal of the state of the science. Palliat Med 2013;27(10):918-24
Pivodic L, Higginson IJ, Sarmento VP, Gomes B. Health metrics: Standardize records of place of death. Nature 2013;495(7442):449
See more publications here.
High prevalence of aggressiveness of care at the end of life in Portugal
New paper by Diogo Martins Branco, published in the ESMO Open, is a nationwide retrospective cohort study aiming to identifiy risk factors associated with the aggressiveness of care at the end of life for cancer patients dying in hospital. The study looked at 92 155 patients (between the years 2010-2015) and found that 7 out of 10 patients with cancer who die in hospital are exposed to what can be considered an excessively aggressive care. See the study's video abstract here and the policy brief (in Portuguese) here.
Resistance training in advanced cancer: a phase II trial
Catarina's phase II trial, published in BMC Supportive & Palliative Care, aimed to test if resistance training at home and in hospital is feasible and safe in advanced cancer. Patients were randomised into one of three arms: (1) supervised resistance training at home; (2) supervised resistance training in hospital; (3) standard care with information leaflet. The results show that resistance training is a safe intervention with similar acceptability in regard to home or hospital. However, it is more feasible at home than in hospital in advanced cancer.
News 2016 - 2017
DINAMO memeber joined the EAPC Paediatric Taskforce
Dr Ana Lacerda, paediatrician at Oncology Institute in Lisbon and children's palliative care advocate, joined the EAPC Paediatric Taskforce. See the Tasforce's current projects here.
DINAMO present at ESMO2017 Congress
Dr Diogo Martins-Branco participated in the poster section with his study on aggressiveness of cancer care near the end of life. Read the abstarct published in the Annals of Oncology here (p497) and see a short interview with the author here.
DINAMO present at MASCC Annual Meeting
Dr Catarina Ribeiro presented her Phase II trial on resistance training in advanced cancer patients at the Annual Meeting in Washington DC. Read the poster's abstract here (pS241).
Maja de Brito wins the Dame Cicely Saunders prize
Maja has been awarded the Dame Cicely Saunders prize for Excellence in Palliative Care for her MSc research project. The awarded study is a secondary analysis of qualitative data, where she aimed to undertsand better the family carers' experiences of home palliative care. Read more about the study here.
DINAMO students sucessfully finished their MSc
Diogo Martins Branco was awarded the MSc in Palliative Care with Merit, while Maja de Brito and Catarina Ribeiro were awarded their MSc with Distinction. Maja and Catarina were also shortlisted for the Dame Cicley Saunders Prize for Academic Excellence in Palliative Care. Results on the winner will be know in early April.
DINAMO winning awards at 2nd Research Congress
The Research Congress of the Portuguese Association of Palliative Care was hosted by DINAMO team member Duarte Soares. DINAMO has been represented with active participation by Diogo Martins Branco, Maja de Brito, Barbara Gomes, Ana Lacerda, Catarina Ribeiro, and Vera P Sarmento. Barbara won the Best Oral Communication Award with her work on the use of mortality data in improving end-of-life care and Maja was awarded with the Best Poster. She presented the methodological aspects of her MSc study on carers experiences in home palliative care. You can see the programe (in Portuguese) here.
Home palliative care works: but how?
New paper by Vera P Sarmento, published in the BMJ Supportive & Palliative Care, is a meta-ethnography aiming to explore key components of home care that shape the experiences of service users. Review included 19 studies with 814 participants. She identified that feeling secure is the core need patients and family carers have. Two service based components that contribute most to security are presence and competence of the health professionals.
You can read the full paper here.
Dr Vera Sarmento wins Professor Jorge da Silva Horta Award
Vera has won the award with the population-based study examining past trends in place of death by age, gender and cause of death and projected future hospital deaths until 2030 in Portugal, a country without integrated palliative care. With this award the Portuguese Medical Association honours young doctors who are first authors of an original research.
You can read her EAPC blog post here and access the article here.
Clinical-Academic Forum advancing the science of palliative care
It has been a busy year since we have announced the expansion of the Clinical-Academic Palliative Care Forum to other regions of Portugal. The Lisbon Forum has had three well attended meetings, the Centre region has had two, and the Alentejo and Algarve Forum met for the first time in July 2016. The Forum of the North region will meet for the sixth time in early December to discuss, among other things, the recently published Strategic Plan for the Development of Palliative Care.
Strategic Plan for the Development of Palliative Care 2017-2018
Portuguese National Palliative Care Commission has published the new Strategic Plan for the Development of Palliative Care 2017-2018. Dr Barbara Gomes has actively participated as an advisor and several DINAMO outputs have been acknowledged in this document of crucial nature for the future direction of palliative care in Portugal.
DINAMO at the Pediatric Palliative Care Congress
School of Health in Viana do Castelo has organized a scientific meeting dedicated to pediatric palliative care where Dr Ana Lacerda and Dr Barbara Gomes lectured on death and its contexts in children and adolescents in Portugal. The programme can be seen here.
DINAMO present at ESMO 2016
Dr Diogo Branco presented his systematic review on safety and effectiveness of interventions for malignant ascites with advanced cancer. Read the abstract in the Annals of Oncology.
DINAMO at the 9th World Research Congress of the EAPC
Dr Catarina Ribeiro presented the systematic review on effectiveness of exercise interventions for the management of sarcopenia in patients with advanced solid tumors and Maja de Brito presented development and testing of our discrete choice experiment on home palliative care. Read the abstracts of the two posters presented at the conference here on pages NP90 and NP114.
VIII National Congress of Palliative Care
DINAMO members were present at the Portuguese National Congress. Dr Barbara Gomes gave a talk on the role of DINAMO in enhancing home palliative care through the last five years. Dr Diogo Branco participated in the poster section with a systematc review on non-surgical management of malignant bowel obstruction. See the Abstract book on the page 111.
New systematic review on palliative care in emergency departments
Dr Duarte Soares published his systematic review on effectiveness of emergency department-based palliative care (PC) interventions on hospital admissions in Journal of Palliative Medicine. Two out of five studies included in the analysis reported on hospital admissions. There is yet no evidence that these interventions affect patient outcomes except for indication from one study of no association with 90-day hospital readmission but a possible reduction in lenght of stay if integrated PC is introduced early at the emergency department rather than after hospital admission. The review showed an urgent need for trials to confirm these findings alongside other potential benefits and survival effects. Read the article here.
Regional Profiles of Palliative Care Needs in Portugal
The Regional Profiles of Palliative Care were developed to know exactly what the local population needs in every region of Portugal. The aim is to improve palliative care across the country. This first edition, highlighted in the national news, includes the following population-based indicators of palliative care needs:
- Number of people who die per year
- Distribution by age and underlying cause of death
- Distribution by place of death (hospital, home and elsewhere)
- Existing palliative care teams and their location
This work has been developed by a working group of the Portuguese Observatory of Palliative Care, which includes the Cicely Saunders Institute at King’s College London, the Institute of Public Health at the University of Porto and the Health School at the Polytechnic Institute of Castelo Branco.
Public launch of the Portuguese Observatory of Palliative Care
On the 27th January the Portuguese Observatory of Palliative Care has been presented for the first time to the public. Two of the DINAMO members, Dr Barbara Gomes and professor Pedro L Ferreira, are the founding members of the Board, and Maja de Brito has been the Observatory's collaborator.
The Clinical Academic Palliative Care Forum has expanded to other regions
Together with Professor Paula Sapeta from the School of Health Castelo Branco, our Rita Canario established the Clinical Academic Palliative Care Forum of the Centre Region, which had a well attended and successful first meeting at the Portuguese Oncology Institute of Coimbra.
A well-attended fourth meeting of the Clinical Academic Palliative Care Forum of the North Region took place at the School of Health in Viana do Castelo.
Best Oral Communication award for DINAMO at the 5th Congress of Palliative Care of the Portuguese Institute of Oncology of Porto, Portugal
DINAMO DCE pilot study with the title “What home palliative care service attributes patients and caregivers value most: piloting of the DCE” won the Best Oral Communication award.
DINAMO at the 18th European Cancer Congress (ECC 2015) in Vienna, Austria
Rita Canario presented the poster entitled "Complex is whatever I cannot solve on my own" - Perspectives of oncologists about complex palliative care needs in cancer: A qualitative study. You can read the abstract here.
A new population-based study on place of death was published in the journal Palliative Medicine. Vera Sarmento, Irene Higginson and Barbara Gomes examined past trends in place of death by age, gender and cause of death and projected future hospital deaths until 2030 in Portugal, a country without integrated palliative care. A one-page article about our findings was published also in national news in Portugal and can be read in English via Microsoft translator here.
This year’s Cicely Saunders annual lecture, broadcasted at University of Porto, was given by Prof Eduardo Bruera. In the lecture entitled ´Clinical interventions to enhance the expectation of healing: continuing on the pathway of Dame Cicely´ Dr Bruera prepared a review of his clinical research on how the delivery of palliative care can be more effective by introducing changes in the physical environment, posture, communication style, giving prompt sheets, audio recording and phone care interventions.
Regional Clinical Academic Forum of the North Region meets for the third time and announces the winner of the Ferraz Goncalves Award
Researchers and clinicians get together to discuss study findings and identify research priorities for the region at this initiative created by DINAMO. Maja de Brito presented the results from the pilot phase of our discrete choice experiment study examining patients and family caregivers preferences for home palliative care.
DINAMO at the 14th World Congress of the European Association for Palliative Care
Read the abstract of our poster entitled "Ten-year Trends in the Risk of Hospital Death for Conditions Needing Palliative Care: A Death Certificate Study" in the congress abstract book, page 249.
DINAMO present at Oncology Spring Meeting
Vera Sarmento and Rita Canario participated in the session Pain and Palliative care where they discussed complex needs in palliative care and home-based palliative care. See the programme here.
Commencement of the DCE pilot study
We have started the pilot phase of a discrete choice experiment study examining patients and family caregivers preferences for home palliative care.
Call for Ferraz Goncalves Award
We are pleased to launch an open call for the Ferraz Goncalves Award, aimed to distinguish an exceptionally good research study in palliative care conducted in the last five years in the North region of Portugal. Deadline for applications: 30 April 2015 (5pm).
DINAMO present at 1st Research Congress of the Portuguese Association of Palliative Care
Duarte Soares presented his systemtic review on effectiveness of emergency department-based palliative care for adults with palliative care needs. See the abstract here, page 16.
A well-attended second meeting of the Clinical Academic Palliative Care Forum of the North Region took place at the Vila Nova de Gaia / Espinho hospital.
Proximity and humanisation at the end of life - Symposium at Calouste Glubenkian Foundation
Project DIMANO participated at the Symposium that gathered collaborators of three different projects dedicated to the development of palliative care in Portugal and founded by the Calouste Gulbenkian Foundation.
Dr Vera Sarmento delivered an oral presentation at the 16th IPOS World Congress entitled “A meta-ethnography of qualitative research on patients’ and family caregivers’ experiences with home palliative care in order to model components and mechanisms of action”. The findings have informed the choice of attributes modelled in DINAMO’s choice experiment on patients’ and family caregivers’ preferences for home palliative care. Read the abstract here, page 70.
Together with nurse Bruno Fonseca from the palliative care team of the Local Health Unit of Matosinhos, we established the Clinical Academic Palliative Care Forum of the North Region, which had a well attended and successful first meeting at the Faculty of Medicine, University of Porto.
Video conference live from King’s College in University of Porto
The Cicely Saunders annual lecture entitled ‘Integration of palliative care into public health and cancer care: a vision for the future’ broadcasted in Faculty of Medicine. The session was led by Professor Stein Kaasa. The lecture considered how to organise comprehensive cancer care from the onset of metastatic disease to the end of life.
Dr Ana Lacerda features in the newsletter of the Calouste Gulbenkian Foundation. The interview describes Ana’s work and experience doing the MSc and combining her studies with clinical work. The article is in Portuguese but can be read in English via Microsoft translator here.
DINAMO at the Portuguese Palliative Care Congress
With presentations from Prof Irene Higginson, Dr Barbara Gomes, Dr Vera Sarmento and Dr Ana Lacerda.
Following the publication of an important and original Cochrane review on home palliative care in Jun 2013, we published a Clinical Evidence Synopsis in JAMA. Read here.
MSc students Dr Ana Lacerda and Dr Vera Sarmento graduated with distinction. Dr Ana Lacerda was awarded the Cicely Saunders Prize for Academic Excellence in Palliative Care. Her MSc project was presented at 8th EAPC World Research Congress, the 2nd Congress on Paediatric Palliative Care and the 7th APCP National Congress in Portugal.
Dr Barbara Gomes features in the newsletter
of the Calouste Gulbenkian Foundation. The interview describes the DINAMO project and some of its findings. The article is in Portuguese but can be read in English via Microsoft translator here
DINAMO on Portuguese TV: place of death, preferences, home care
Dr Barbara Gomes was interviewed in November 2013 for the Portuguese TV programme Civil Society. Following a new report published by DINAMO's team examining preferences and place of death in Portugal, Civil Society dedicated an episode to ‘Choosing Where to Die’. Barbara explained the origins of the report (funded by the Calouste Gulbenkian Foundation), the importance of the topic in Portugal, and how the findings can translate into action, to ensure that palliative care services develop where people prefer to be cared for and to die. You can watch the full episode (in Portuguese) here, Barbara’s participation starts at around 22.42 min.
Preferences and reality for place of death in Portugal in 2010
This report, released in the World Hospice & Palliative Care Day (12 October 2013), calls for urgent national action to reduce the gap between population preferences and reality for place of death in Portugal. While 51% of the population would prefer to die at home, almost two thirds die in hospital (62%) and less than a third die in community settings including home and care homes (30%). This gap exists in all regions and age groups. The current ratio of one specialist home palliative team per 750 thousand inhabitants is far from the recommended by the European Association for Palliative Care (one team per 100 thousand inhabitants). The authors call for a national strategy for the development of palliative care services with a focus on home palliative care.
Findings of our Cochrane review on home palliative care presented at the workshop “Models of Palliative Care Provision: Present and Future” organised by the University of Lisbon.
Dr Barbara Gomes received the second joint prize of the EAPC Early Researcher Award 2013. Read the EAPC blog here.
We published an original Cochrane review on the effectiveness and cost-effectiveness of home palliative care services for adults with advanced disease and their family caregivers. The results show that home palliative care doubles the odds of dying at home and reduces symptom burden for patients, without impacting on caregiver grief. Evidence on cost-effectiveness is still inconclusive and there is a real need for robust studies on this matter. Read more here.
MSc Student Dr Ana Lacerda becomes the coordinator of the Portuguese Association for Palliative Care Taskforce on Paediatric Palliative Care and of the Committee on Continuous and Palliative Care of the Portuguese Paediatrics Society.
Findings of the upcoming Cochrane review on home palliative care presented at the International Congress of Palliative Care organised by the North Health Authority in Portugal (ARS Norte).
We published a letter in Nature calling for the record of place of death to be incorporated into death-registration data and standardised across countries. In this letter, we highlight our work on place of death in Portugal, with the supply of survey information to help improve the recording of place of death in the electronic death-registration system. Read here.
MSc student Dr Helder Aguiar was awarded an MSc in Palliative Care with Merit.
Dr Barbara Gomes hosted a session at the National Cancer Research Institute (NCRI) Cancer Conference in Liverpool entitled “Can this patient die comfortably at home? Knowing the risks and what helps”, bringing together three expert colleagues from Belgium, the US and Scotland. See page 32 here.
Prof Irene Higginson presented a plenary entitled “Dying at home - is it better: what have we learned and where are we going?” at the 7th EAPC Research Congress in Trondheim. This led to a paper published in Palliative Medicine. See page 451 here.
MSc student Dr Helder Aguiar joined the EAPC Primary Care Taskforce. This resulted in the article "Palliative Care in Primary Care: an update from the taskforce" published online in the EAPC blog. Read here. It also led to the publication of an article in the Portuguese Journal of Family and General Practice entitled “Palliative care in primary care – the challenge for the XXI century”. Read here.
MSc Scholarship awarded through open competition to a senior consultant in Pediatrics at the Lisbon Cancer Institute, Dr Ana Lacerda.
Clinical PhD Fellowship awarded through open competition to an intern in Internal Medicine from Evora, Dr Vera Sarmento.
Dr Barbara Gomes presented at the 18th meeting of interns in Family and General Practice of the North region of Portugal. This was an important meeting to raise awareness of the need and challenges for home palliative care amongst interns in Family and General Practice and their supervisors. The presentation, which included data about the preferences of residents in the North region of Portugal for where to die in a scenario of advanced cancer, was well received and discussed by the participants.
DINAMO highlighted in a news piece of the European Journal of Cancer as a new research venture in palliative care. This comes following the final symposium of the European Project PRISMA (Brussels March 2011), which brought together palliative care researchers, policy-makers and other key stakeholders from across Europe. Read here.
MSc Scholarship awarded through open competition to an intern in Family and General Practice from Sao Joao da Madeira, Dr Helder Aguiar.