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The Current State of Neuropalliative Care in Brazil: Trends in Representation and Advocacy

Authors:
Max Sarmet at University of Brasília
Max Sarmet
Erika R.N. Cavalcanti de Oliveira at Hospital de Apoio de Brasilia
Erika R.N. Cavalcanti de Oliveira
  • Hospital de Apoio de Brasilia
Hamilton Cirne at Hospital de apoio de brasilia
Hamilton Cirne
  • Hospital de apoio de brasilia
Jorge L Zeredo at University of Brasília
Jorge L Zeredo
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The Current State of Neuropalliative Care in Brazil:
Trends in Representation and Advocacy
Max Sarmet, SLP, MSc,
1–3,i
Erika R.N. Cavalcanti de Oliveira, MD,
1
Hamilton Cirne Franco, MD,
2
Jorge L. Zeredo, DDS, PhD,
3
and Ambereen K. Mehta, MD, MPH
4
Dear Editor:
In the past half of the century, life expectancy for the older
adult in Brazil has increased,
1
and an associated increased
prevalence of neurological disease is expected as well. Yet,
there is a dearth of epidemiological studies to guide the clin-
ical, research, education, and advocacy needs for this patient
population in Brazil. One study found the incidence of
amyotrophic lateral sclerosis (ALS) in Brazil to be 1.77–2.30
per 100,000 person-years, similar to that in Europe and North
America.
2
Neurological diseases significantly impact the quality of
life of the persons diagnosed, their care partners, and loved
ones. This has led to the growth and development of palli-
ative care (PC) for neurological disease, known as neuro-
palliative care (NPC), around the world.
3,4
The current state
of NPC in Brazil has not been well defined. To bring atten-
tion to this topic, we review the existing representation of
NPC within medical advocacy groups.
Representation of NPC in international medical societies
has been slowly increasing, especially in the United States.
For example, over the past two years, an NPC committee
exists as part of the American Academy of Hospice and
Palliative Medicine, the American Academy of Neurology,
and the Northeast ALS Consortium. In Brazil, the Society of
Geriatrics and Gerontology and the Brazilian Academy of
Neurology developed their PC committees in 2011 and 2020,
respectively. The Brazilian National Academy of Palliative
Care (ANCP), which is the largest medical society of PC in
Brazil, does not have an NPC committee.
The ANCP Brazilian Congress of PC is the most recog-
nized national medical conference on PC in Brazil. Of all
Brazilian health care associations related to PC or neurol-
ogy, this is the only meeting with publicly available pro-
ceedings, and the representation of NPC within this congress
has remained small. Of abstracts publicly available (1557
total) over four years (2010, 2016, 2018, and 2020), an aver-
age of 8% addressed neurological diseases without much in-
crease over the decade (2010: *5%, 2020: *8%). The most
represented topics related to NPC are shown in Figure 1. The
establishment of a committee focused on NPC within the
ANPC may begin to address this much needed representation
of NPC within the congress.
The lack of NPC representation within the Brazilian
medical advocacy groups does not reflect the growth of the
field. We speculate that the current lack of representation
adds to the multiple barriers such as limited published data
on the clinical impact of NPC in Brazil, available funding
dedicated to the development of NPC in Brazil, and the effort
and time needed to create new committees within existing
medical advocacy groups.
Yet, the international need for NPC is reinforced by the
creation of new independent societies such as the Interna-
tional Neuropalliative Care Society.
4
The NPC needs of the
Brazilian people are unique, and to best care for them the
field should encompass their cultural, ethnic, and racial char-
acteristics. Increasing representation within medical advo-
cacy groups may serve as a catalyst for NPC clinical care,
research, and education in Brazil.
1
Department of Palliative Care, Hospital de Apoio de Brası
´lia, Brası
´lia, Brazil.
2
Department of Neurology, Tertiary Referral Center of Neuromuscular Diseases, Hospital de Apoio de Brası
´lia, Brası
´lia, Brazil.
3
Graduate Department of Health Sciences and Technologies, University of Brası
´lia, Brası
´lia, Brazil.
4
Palliative Care Program, Division of General Internal Medicine, Johns Hopkins Bayview Medical Center, Johns Hopkins University
School of Medicine, Baltimore, Maryland, USA.
i
ORCID ID (https://orcid.org/0000-0003-3029-8912).
JOURNAL OF PALLIATIVE MEDICINE
Volume 25, Number 3, 2022
ªMary Ann Liebert, Inc.
DOI: 10.1089/jpm.2021.0614
343
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Authors’ Contributions
All authors listed have contributed sufficiently to the
project to be included as authors, and all those who are
qualified to be authors are listed in the author byline.
Author Disclosure Statement
The authors report no conflicts of interest and certify that
no funding has been received for this study and/or prepara-
tion of this article.
Funding Information
No targeted funding reported.
References
1. Camargos MCS, Gonzaga MR, Costa JV, et al.: Disability-
free life expectancy estimates for Brazil and Major Regions,
1998 and 2013. Cien Saude Colet 2019;24:737–747.
2. Moura MC, Casulari LA, Carvalho Garbi Novaes MR:
Ethnic and demographic incidence of amyotrophic lateral
sclerosis (ALS) in Brazil: A population based study.
Amyotroph Lateral Scler Frontotemporal Degener 2016;17:
275–281.
3. Creutzfeldt CJ, Kluger B, Kelly AG, et al.: Neuropalliative
care: Priorities to move the field forward. Neurology 2018;
91:217–226.
4. The Lancet Neurology: New hope for advancing neuro-
palliative care. Lancet Neurol 2021;20:409.
Address correspondence to:
Max Sarmet, SLP, MSc
Graduate Department of Health
Sciences and Technologies
University of Brası
´lia
Campus Universita
´rio, s/n, Centro Metropolitano
Brası
´lia 70910-900
Brazil
E-mail: maxsarmet@gmail.com
FIG. 1. ‘‘Word tree’’ analysis of NPC-related keywords. This word tree was generated automatically by Iramuteq as a
result of text corpus analysis. The original text corpus was entirely written in Brazilian Portuguese and words were
translated after the analysis to build this word tree. According to Iramuteq methods, eff score (eff) means the number of text
segments containing at least once the cited word. In the figure, word size is defined according to the eff score observed.
Word’s relationship is represented by the tree branches—the closer to the stem, the more frequent the word appears in the
text corpus. Besides that, the distance between words represents the strength of their association throughout the text corpus.
Two main categories were identified—patient (eff =6295) and palliative care (eff =5459). The subjects most related to NPC
are highlighted in bold and the respective eff scores are described hereunder [word (eff )]: chronic diseases (171), degen-
erative (45), stroke (47), Alzheimer’s disease (40), neurological disease (25), Parkinson’s disease (19), amyotrophic lateral
sclerosis (13), dementia (10), demential syndrome (10), neurodegenerative (9), spinal muscular atrophy (8), cerebrovascular
diseases (3), thromboembolism (3), and neuromuscular (3). NPC, neuropalliative care.
344 LETTERS TO THE EDITOR
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... 4 Among the options available for analyzing these data are natural language processing tools, which have been increasingly used in palliative care research over the last 5 years (in absolute and relative numbers) for their versatility and accuracy. [4][5][6] In less than a decade, big data and artificial intelligence have significantly contributed to technological progress in multiple fields and may also show promise as a new emerging technology in palliative care research. [7][8][9] However, some challenges are faced in the use of natural language processing for palliative care research, including the inadequate capture of certain information, such as non-hospital and mortality data, patient experience information, and available familial/social support. ...
... Another interesting finding was that many of the studies used a combination of more than one 27 Elhazmi et al., 33 Ganguli et al., 36 George et al., 37 Hu et al., 44 Kehl et al., 48 Laios et al., 50 Lin et al., 57 Manz et al., 66 Agarwal et al., 74 Santos et al., 77 Sung et al., 82 Ye et al. 93 Assessment of the impact of interventions 9 (10.9) Ando et al., 22 Greer et al., 42 Lakin et al., 51 Lefèvre et al., 56 Macieira et al., 64 Santarpia et al., 76 Steiner et al., 80 Udelsman et al., 87 Uyeda et al. 89 Social and spiritual health 8 (9.7) Gray et al., 40 Johnson et al., 46,47 Masukawa et al., 67 Yoon et al., 94 Ando et al., 96 Ando et al. 99 Topic identification 8 (9.7) Sarmet et al., 5 Ando et al., 21 Chan et al., 26 Davoudi et al., 29 Agaronnik et al., 52 Lucini et al., 61 Seale et al., 78 Wang et al. 90 Advance care planning/EOL process measures/Code-status clarification/Goals of care documentation ...
The use of natural language processing in palliative care research: A scoping review
Article
  • Dec 2022
  • PALLIATIVE MED
Background: Natural language processing has been increasingly used in palliative care research over the last 5 years for its versatility and accuracy. Aim: To evaluate and characterize natural language processing use in palliative care research, including the most commonly used natural language processing software and computational methods, data sources, trends in natural language processing use over time, and palliative care topics addressed. Design: A scoping review using the framework by Arksey and O'Malley and the updated recommendations proposed by Levac et al. was conducted. Sources: PubMed, Web of Science, Embase, Scopus, and IEEE Xplore databases were searched for palliative care studies that utilized natural language processing tools. Data on study characteristics and natural language processing instruments used were collected and relevant palliative care topics were identified. Results: 197 relevant references were identified. Of these, 82 were included after full-text review. Studies were published in 48 different journals from 2007 to 2022. The average sample size was 21,541 (median 435). Thirty-two different natural language processing software and 33 machine-learning methods were identified. Nine main sources for data processing and 15 main palliative care topics across the included studies were identified. The most frequent topic was mortality and prognosis prediction. We also identified a trend where natural language processing was frequently used in analyzing clinical serious illness conversations extracted from audio recordings. Conclusions: We found 82 papers on palliative care using natural language processing methods for a wide-range of topics and sources of data that could expand the use of this methodology. We encourage researchers to consider incorporating this cutting-edge research methodology in future studies to improve published palliative care data.
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Estimativas de expectativa de vida livre de incapacidade funcional para Brasil e Grandes Regiões, 1998 e 2013
Article
Full-text available
  • Mar 2019
Resumo A expectativa de vida aos 60 anos no Brasil aumentou cerca de 9 anos em pouco mais de meio século. Trata-se de um ganho de sobrevida generalizado, mas que também ocorre de forma heterogênica entre as Grandes Regiões do país. Por outro lado, pouco se sabe, ainda, como os aumentos da expectativa de vida aos 60 anos por região podem ser acompanhados por acréscimos ou decréscimos tanto nos anos vividos com incapacidade, quanto nos vividos livre de incapacidade. O objetivo deste artigo é analisar, para 1998 e 2013, aumentos na Expectativa de Vida Total e suas componentes: Expectativa de Vida Livre de Incapacidade Funcional (EVLI) e com Incapacidade Funcional (EVCI), aos 60, 70 e 80 anos para a população do Brasil e Grandes Regiões. O estudo utilizou informações sobre incapacidade funcional da PNAD de 1998 e PNS de 2013 e empregou o método de Sullivan para estimação da EVLI por sexo e idade. No geral, os resultados mostraram que, entre 1998 e 2013, concomitantemente aos ganhos na EV, ocorreu um crescimento na EVLI. Contudo, os ganhos na EVLI não foram estatisticamente significativos para as regiões Norte e Centro-Oeste. Ou seja, com exceção dessas regiões, além de viver mais, a população idosa de 60 anos poderia esperar viver um número maior de anos com saúde.
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Ethnic and demographic incidence of amyotrophic lateral sclerosis (ALS) in Brazil: A population based study
Article
Full-text available
  • Feb 2016
Our objectives were to examine demographic and ethnic factors associated with amyotrophic lateral sclerosis in Brazil. The method used was a retrospective study of death certificates performed in June 2015, identifying the incidence of amyotrophic lateral sclerosis over 10 years, from January 2004 to December 2013, related to gender, age and race. Results revealed 8942 death certificates with 8152 as the underlying cause and 790 as a secondary cause. The average age was 62.7 ± 13.2 years, with a predominance of males (1·3:1). The adjusted mortality rate over 20 years was 0.61 to 0.89/100,000 person-years, and over 45 years was 1.77 to 2.3/100,000 person-years. There was a predominance of amyotrophic lateral sclerosis in Caucasians compared to the general population above 20 years (2010 Census), with an odds ratio (OR) of 2.92 (95% CI 2.78-3.07). The OR in blacks was 0.04 (95% CI: 0.03-0.04), in mestizos was 0.05 (0.04-0.07), and in Indians was 0.02 (0.01-0.04). The mean age was lower than in European populations (48.5 ± 12.3 years) (p < 0.0001). In conclusion, the incidence of amyotrophic lateral sclerosis in Brazil is close to other Latin American populations, with a lower age at death and clear predominance in Caucasians.
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Neuropalliative care: Priorities to move the field forward
Article
  • Jun 2018
Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.
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Disabilityfree life expectancy estimates for Brazil and Major Regions
  • Jan 1998
  • 737-747
  • Mcs Camargos
  • M R Gonzaga
  • J V Costa
Camargos MCS, Gonzaga MR, Costa JV, et al.: Disabilityfree life expectancy estimates for Brazil and Major Regions, 1998 and 2013. Cien Saude Colet 2019;24:737-747.
The Lancet Neurology: New hope for advancing neuropalliative care
  • Jan 2021
  • LANCET NEUROL
  • 409
The Lancet Neurology: New hope for advancing neuropalliative care. Lancet Neurol 2021;20:409.