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Elements for assistance to patients with hematological malignancies to propose care lines: a scoping review

Elementos de asistencia a pacientes con neoplasias hematológicas para proponer líneas de atención: revisión de alcance

ABSTRACT

Objectives:

to identify the elements for assistance to patients with hematological malignancies to propose a care line.

Methods:

this is a scoping review, anchored in the JBI theoretical framework, with searches carried out in April 2021, in eight electronic databases and 10 repositories of theses and dissertations.

Results:

the final sample consisted of 93 studies, and the main forms of assistance provided that can support a care line for this public were imaging tests, immunophenotyping, chemotherapy regimens, radiotherapy, infection management, assessment of nutritional status, maintenance of oral function, symptom management and screening for second malignancies.

Conclusions:

the elaboration of a care line for onco-hematologic patients is necessary, considering the complexity surrounding the diagnosis and treatment of hematologic malignancies, in addition to the difficulties that are imposed in relation to access and continuity of care in the network.

Descriptors:
Comprehensive Health Care; Patients; Patient Care Planning; Hematologic Neoplasms; Neoplasms

RESUMEN

Objetivos:

identificar los elementos para la asistencia a pacientes con neoplasias hematológicas para proponer una línea de atención.

Métodos:

se trata de una revisión de alcance, anclada en el marco teórico del JBI, con búsquedas realizadas en abril de 2021 en ocho bases de datos electrónicas y 10 repositorios de tesis y disertaciones.

Resultados:

la muestra final estuvo compuesta por 93 estudios, y las principales formas de asistencia brindadas que pueden sustentar una línea de atención a este público fueron pruebas de imagen, inmunofenotipificación, regímenes de quimioterapia, radioterapia, manejo de infecciones, evaluación del estado nutricional, mantenimiento de la función oral, manejo de síntomas y detección de segundas neoplasias malignas.

Conclusiones:

es necesario el desarrollo de una línea de atención al paciente oncohematológico, dada la complejidad que rodea al diagnóstico y tratamiento de las neoplasias hematológicas, además de las dificultades que se imponen en relación al acceso y continuidad de la atención en una red.

Descriptores:
Atención Integral de Salud; Pacientes; Planificación de Atención al Paciente; Neoplasias Hematológicas; Neoplasias

RESUMO

Objetivos:

identificar os elementos para assistência a pacientes com neoplasias hematológicas para propor uma linha de cuidado.

Métodos:

trata-se de uma scoping review, ancorada no referencial teórico do JBI, com buscas realizadas em abril de 2021 em oito bases de dados eletrônicas e 10 repositórios de teses e dissertações.

Resultados:

a amostra final foi composta por 93 estudos, e as principais formas de assistências prestadas que podem embasar uma linha de cuidado para esse público foram exames de imagem, imunofenotipagem, regimes quimioterápicos, radioterapia, gestão de infecções, avaliação do estado nutricional, manutenção da função oral, gerenciamento de sintomas e rastreio para segundas neoplasias.

Conclusões:

a elaboração de uma linha de cuidados para pacientes onco-hematológicos se faz necessária, tendo em vista a complexidade que cerca o diagnóstico e tratamento das neoplasias hematológicas, além das dificuldades que se impõem em relação ao acesso e continuidade do cuidado em rede.

Descritores:
Assistência Integral à Saúde; Pacientes; Planejamento de Assistência ao Paciente; Neoplasias Hematológicas; Neoplasias

INTRODUCTION

Care lines (CL) refer to proposals for articulating resources and health production practices, based on the most relevant epidemiological needs. This allows defining a care flow through which users must travel through Health Care Networks (RAS - Redes de Atenção à Saúde) in order to meet their health needs(11 Marques M, Barbiani R, Nora CRD, Cremonese L, Miguel TB, Ciconet RM, et al. Line of care for the attention to morbimortality from external causes in adolescents and young people. Rev Bras Enferm. 2022;75(suppl 2). https://doi.org/10.1590/0034-7167-2020-0428
https://doi.org/10.1590/0034-7167-2020-0...
-22 Trindade LF, Kolankiewicz ACB, Bandeira LR, Rodrigues CD, Zeitoune RCG, Loro MM. Praxis of family health teams in the care of cancer patients. Acta Paul Enferm. 2021;34. https://doi.org/10.37689/acta-ape/2021AO03054
https://doi.org/10.37689/acta-ape/2021AO...
).

In view of this, RAS are an organizational model of the health care system, with different technological densities, which are articulated to promote continuous, comprehensive and quality health care. Therefore, they propose to break with the fragmentation of care, by the continuity of health care at all levels of the system, focusing on the management of chronic conditions, concomitantly with acute conditions(33 Damaceno AN, Lima MADS, Pucci VR, Weiller TH. Health care networks: a strategy for health systems integration. Rev Enferm UFSM. 2020;10(14):1-14. https://doi.org/10.5902/2179769236832
https://doi.org/10.5902/2179769236832...
-44 Landim ELAS, Guimarães MCL, Pereira APCM. Healthcare network: systemic integration from the perspective of macromanagement. Saúde Debate. 2019;43(suppl 5). https://doi.org/10.1590/0103-11042019S514
https://doi.org/10.1590/0103-11042019S51...
).

In this regard, the care network for chronic non-communicable diseases is one of the priority networks, with emphasis on the prevention and control of some health conditions(55 Figueiredo AEB, Ceccon RF, Figueiredo JHC. Chronic non-communicable diseases and their implications in the life of dependent elderly people. Ciênc Saúde Colet. 2021;26(01). https://doi.org/10.1590/1413-81232020261.33882020
https://doi.org/10.1590/1413-81232020261...
), as cancer, in order to reduce the incidence of some types of malignancies and improve the quality of life of users with this disease.

That said, we observed the importance of a CL to organize health care that meets individuals’ needs in the context of onco-hematological diseases, in order to enable the provision of care in a timely manner for promotion, prevention, protection, surveillance, diagnosis, treatment and hematological cancer rehabilitation(66 Galvão ND, Souza RAG, Souza BSN, Melanda FN, Andrade ACS, Sousa NFS, et al. Cancer surveillance in Mato Grosso, Brazil: methodological and operational aspects of a university extension/research project. Rev Bras Epidemiol. 2022;25(suppl 1). https://doi.org/10.1590/1980-549720220002.supl.1.1
https://doi.org/10.1590/1980-54972022000...
), since they are cancers with a significant incidence in the population(77 Silva FF, Latorre MRDO. Survival from acute lymphocytic leukemia in children in the city of São Paulo, Brazil. Cad Saúde Pública. 2020;36(3). https://doi.org/10.1590/0102-311X00008019
https://doi.org/10.1590/0102-311X0000801...
).

Hodgkin’s Lymphoma (HL), Non-Hodgkin’s Lymphoma (NHL) and Multiple Myeloma (MM) represented, respectively, about 1.4, 7.0 and 2.3 million lives affected by these types of hematological malignancies(88 GBD 2017 DALYs and HALE Collaborators. Global, regional, and national disability-adjusted life-years (DALYs) for 359 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2018;392(10159):1859-922. https://doi.org/10.1016/S0140-6736(18)32203-7
https://doi.org/10.1016/S0140-6736(18)32...
). In addition to this, The incidence rate of Chronic Lymphocytic Leukemia (CLL) and Acute Myeloid Leukemia (AML) has increased considerably in most countries(99 Dong Y, Shi O, Zeng Q, Lu X, Wang W, Li Y, et al. Leukemia incidence trends at the global, regional, and national level between 1990 and 2017. Exp Hematol Oncol. 2020;9:14. https://doi.org/10.1186/s40164-020-00170-6
https://doi.org/10.1186/s40164-020-00170...
) and the incidence of HL cases increased by 38.6% between 1990 and 2017(1010 Zhou L, Deng Y, Li N, Zheng Y, Tian T, Zhai Z, et al. Global, regional, and national burden of Hodgkin lymphoma from 1990 to 2017: estimates from the 2017 Global Burden of Disease study. J Hematol Oncol. 2019;12(1):107. https://doi.org/10.1186/s13045-019-0799-1
https://doi.org/10.1186/s13045-019-0799-...
).

Such diseases require specialized attention, rapid diagnosis and effective treatment, given their rapid evolution, such as AML, which, although the prognosis has improved in recent decades, only one in four patients survives five years or more(1111 Vosberg S, Greif PA. Clonal evolution of acute myeloid leukemia from diagnosis to relapse. Genes Chromosomes Cancer. 2019;58(12):839-49. https://doi.org/10.1002/gcc.22806
https://doi.org/10.1002/gcc.22806...
). In this context, there is a need to systematize the care provided to these patients.

Therefore, it is essential to sum up the elements for the care provided to patients with hematological malignancies to elaborate and propose a CL for such a specific audience, in order to support a safe, quality and assertive care. Moreover, this compilation of knowledge can support clinical decisions and conduct taken, as well as the performance of professionals and the follow-up of patients between health services, therefore, with triggering and improvement of clinical itinerary, in order to ensure the provision of care based on the best available evidence.

Given the above, this study sought to answer the following guiding question: what are the elements for assistance to patients with hematological malignancies that can support the proposition of a CL?

OBJECTIVES

To identify the elements for assistance to patients with hematological malignancies to propose a CL.

METHODS

Ethical aspects

As it was research that used public domain materials and did not involve human beings, it was not necessary to be appreciated by the Research Ethics Committee. However, it is important to highlight that the copyright was respected with correct citation and referencing.

Study design

This is a scoping review, based on the method proposed by the JBI Reviewer’s Manual and conducted according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR): Checklist recommendations(1212 Aromataris E, Munn Z (Editors). JBI Reviewer's Manual [Internet]. JBI; 2020 [cited 2021 Apr 28]. Available from: https://reviewersmanual.joannabriggs.org/
https://reviewersmanual.joannabriggs.org...
-1313 Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73. https://doi.org/10.7326/M18-0850
https://doi.org/10.7326/M18-0850...
). The research protocol is registered in the Open Science Framework (https://doi.org/ 10.17605/OSF.IO/VCGPQ).

This type of review aims to investigate scientific evidence, identify and map existing gaps in a given area of study(1414 Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. https://doi. org/10.1080/1364557032000119616
https://doi. org/10.1080/136455703200011...
). It was developed through five stages: I- definition of research question; II- search for relevant studies; III- selection of studies; IV- data extraction and analysis; V- gathering, synthesis and presentation of results(1515 Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: the PRISMA Statement. PLoS Med. 2009;6(7):e1000097. https://doi.org/10.1371/journal.pmed.1000097
https://doi.org/10.1371/journal.pmed.100...
).

Methodological procedures

The first stage included the elaboration of the research question through the PCC strategy (P = Population: onco-hematologic patients; C = Concept: assistance; C = Context: CL).

To complete the second stage, the descriptors that encompassed the largest number of studies related to the research topic were identified, through consultation in the Medical Subject Headings (MeSH), for descriptors in English, and in the Health Science Descriptors (DeCS), for descriptors in Portuguese. This process, added to the employment of the Boolean operator AND, culminated in the development of the following search strategy (with its respective descriptors in Portuguese): (Patients AND Patient Care Planning AND Hematologic Neoplasms).

Initially, as a way to ensure that there are no studies with the same theme registered in the OSF or published, a broad search was carried out on the platform and in databases to identify protocols or reviews with similar themes. From this diagnosis, it was followed with the steps to consolidate the scoping review.

Study selection consisted in identifying texts in the databases and repositories of theses and dissertations by reading title and abstract, for screening the works according to eligibility criteria and reading full text for data extraction. The analyses were performed by peers of reviewers independently and, in case of disagreement, there was discussion for reaching consensus. In cases of doubts and disagreements, the opinion of a third reviewer specialized in the area of the object of study was requested.

For the step of separating, summarizing and reporting the essential elements found, a structured instrument specifically designed for this purpose was used. This tool allowed data synthesis, interpretation and basic numerical analysis of the extent, nature and distribution of studies selected to compose the final sample.

Data source

The searches were carried out in April 2021 in the following databases and repositories of theses and dissertations: U.S. National Library of Medicine (PubMed), Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, Science Direct, PSYCHINFO, EMBASE, Latin American and Caribbean Literature in Health Sciences (LILACS), The National Library of Australia’s Trobe (Trove), Academic Archive Online (DIVA), Electronic Theses Online Service (EThOS), The Education Resources Information Center (ERIC), Theses Canada, DART-Europe E-Theses Portal, National ETD Portal, Theses and Dissertations from Latin America, CAPES Theses and Dissertations Portal and Portuguese Open Access Scientific Repositories (RCAAP - Repositórios Científicos de Acesso Aberto de Portugal).

Data collection and organization

From the studies included in the final sample, the following variables were extracted: year of publication, country of study, language, methodological design, level of evidence, level of health care, type of hematological cancer, the area of health professionals and CL used for assistance to patients with hematological malignancies. The studies’ level of evidence was classified according to JBI proposal(1616 The Joanna Briggs Institute Levels of Evidence and Grades of Recommendation Working Party. Supporting Document for the Joanna Briggs Institute Levels of Evidence and Grades of Recommendation [Internet]. The Joanna Briggs Institute. 2014 [cited 2021 Oct 10]. Available from: https://jbi.global/sites/default/files/2019-05/JBI%20Levels%20of%20Evidence%20Supporting%20Documents-v2.pdf
https://jbi.global/sites/default/files/2...
), categorized from one (I) to five (V).

Data mapping occurred through the use of a structured instrument, proposed by JBI Reviewers(1313 Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467-73. https://doi.org/10.7326/M18-0850
https://doi.org/10.7326/M18-0850...
), which enabled the identification of essential information from the studies, which made it possible to synthesize and interpret data, in addition to generating the basic numerical analysis of the extent, nature and distribution of the studies incorporated in the review.

Data analysis

The collected data were organized in Microsoft Excel 2016® spreadsheets, analyzed using simple descriptive statistics and presented in graphs, figures, charts and/or tables, as appropriate, to compose the results of this study.

RESULTS

Searches in the databases resulted in a final sample consisting of 93 studies, based on the selection process described in Figure 1.

Figure 1
Flowchart of the selection process, adapted according to PRISMA-ScR(1212 Aromataris E, Munn Z (Editors). JBI Reviewer's Manual [Internet]. JBI; 2020 [cited 2021 Apr 28]. Available from: https://reviewersmanual.joannabriggs.org/
https://reviewersmanual.joannabriggs.org...
), Natal, Rio Grande do Norte, Brazil, 2021

Study characterization included in the final sample is described in Chart 1, according to year of publication, country of study, study design, level of evidence, level of health care, type of hematological malignancy and synthesis of CL identified.

Chart 1
Study characterization regarding year and country of research development and the elements for assistance to patients with hematological malignancies, Natal, Rio Grande do Norte, Brazil, 2021 (n=93)

There are productions from 1978 to the present day, in which an increase in the last decade stands out, with emphasis on the year 2019 (17; 18.28%). The language of publications was English (93; 100%). Most publications are from the United States of America (USA) (30; 32.26%).

The most developed study design was systematic review (29; 31.18%) and cohort (25; 26.88%). Thus, the level of evidence that stood out was II (29; 31.18%). The assistance provided to people with hematological malignancies stands out due to the levels of health care of high complexity (65; 54.62%) and medium complexity (49; 41.18%). The types of hematological malignancies most addressed in the studies were leukemias (42; 37.5%) and lymphomas (21; 18.75%). Moreover, the most approached type of care was treatment (50; 52.63%), followed by diagnosis (15; 15.79%).

It is noteworthy that some studies portrayed more than one type of care, more than one type of hematological malignancy and the care is applied at different levels of health care, as shown in Chart 1, which justifies the amount of these variables exceeding the amount of the sample (93; 100%).

Article references in the sample of data selected in this research are found in a file attached to the OSF and can be consulted from the access to the platform, through the link available in the second paragraph of the method.

DISCUSSION

The epidemiological relevance of hematological cancer and the interest in improving care for patients affected by this disease are confirmed by the specific care needs, the quantitative of the final sample of this research, the growing number of scientific productions carried out in the last decade and the increase in rates incidence of this type of cancer(88 GBD 2017 DALYs and HALE Collaborators. Global, regional, and national disability-adjusted life-years (DALYs) for 359 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2018;392(10159):1859-922. https://doi.org/10.1016/S0140-6736(18)32203-7
https://doi.org/10.1016/S0140-6736(18)32...
,99 Dong Y, Shi O, Zeng Q, Lu X, Wang W, Li Y, et al. Leukemia incidence trends at the global, regional, and national level between 1990 and 2017. Exp Hematol Oncol. 2020;9:14. https://doi.org/10.1186/s40164-020-00170-6
https://doi.org/10.1186/s40164-020-00170...
,1010 Zhou L, Deng Y, Li N, Zheng Y, Tian T, Zhai Z, et al. Global, regional, and national burden of Hodgkin lymphoma from 1990 to 2017: estimates from the 2017 Global Burden of Disease study. J Hematol Oncol. 2019;12(1):107. https://doi.org/10.1186/s13045-019-0799-1
https://doi.org/10.1186/s13045-019-0799-...
,1717 Syed-Abdul S, Firdani RP, Chung HJ, Uddin M, Hur M, Park JH, et al. Artificial intelligence based models for screening of hematologic malignancies using cell population data. Scientific Rep. 2020;10:4583. https://doi.org/10.1038/s41598-020-61247-0
https://doi.org/10.1038/s41598-020-61247...
-1818 Osterman CK, Triglianos T, Winzelberg GS, Nichols AD, Rodriguez-O’Donnell D, Bigelow SM, et al. Risk stratification and outreach to hematology/oncology patients during the COVID-19 pandemic. Support Care Cancer. 2021;29(3):1161-64. https://doi.org/10.1007/s00520-020-05744-y
https://doi.org/10.1007/s00520-020-05744...
).

The most frequent place of studies was the USA and European countries; on the other hand, it is observed that the African continent had no representation, which is possible to correlate with the investment in the technological apparatus and development of scientific productions in these countries(1919 Okoroiwu HU, López-Muñoz F, Povedano-Montero FJ. Bibliometric analysis of global sickle cell disease research from 1997 to 2017. Hematol, Transfus Cell Ther. 2022;44(2):186-96. https://doi.org/10.1016/j.htct.2020.09.156
https://doi.org/10.1016/j.htct.2020.09.1...
-2020 Hofsefh LJ. Getting rigorous with scientific rigor. Carcinogenesis. 2018;39(1):21-5. https://doi.org/10.1093/carcin/bgx085
https://doi.org/10.1093/carcin/bgx085...
).

Similarly, this relationship may be associated with the magnitude of hematological cancer(2121 Mascaro JS, Waller AV, Wright L, Leonard T, Haack C, Waller EK. Individualized, single session yoga therapy to reduce physical and emotional symptoms in hospitalized hematological cancer patients. Integr Cancer Ther. 2019;18. https://doi.org/10.1177/1534735419861692
https://doi.org/10.1177/1534735419861692...
-2222 Verhoef MJ, Nijs EJM, Ootjers CS, Fiocco M, Fogteloo AJ, Heringhaus C, et al. End-of-life trajectories of patients with hematological malignancies and patients with advanced solid tumors visiting the emergency department: the need for a proactive integrated care approach. Am J Hosp Palliat Care. 2029;37(9):692-700. https://doi.org/10.1177/1049909119896533
https://doi.org/10.1177/1049909119896533...
) in this group of countries, given that North America has the second highest incidence of NHL cases and Europe ranks third in terms of diagnosis of this disease(2323 Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021;71(3):209-49. https://doi.org/10.3322/caac.21660
https://doi.org/10.3322/caac.21660...
). Moreover, CLL and AML were more commonly diagnosed in countries located in Europe and North America between 1997 and 2017(99 Dong Y, Shi O, Zeng Q, Lu X, Wang W, Li Y, et al. Leukemia incidence trends at the global, regional, and national level between 1990 and 2017. Exp Hematol Oncol. 2020;9:14. https://doi.org/10.1186/s40164-020-00170-6
https://doi.org/10.1186/s40164-020-00170...
).

Furthermore, the most discussed malignancies in the studies were leukemias and lymphomas, in line with the need to provide care to patients, given that these are the types of hematological cancer most distributed among the population(77 Silva FF, Latorre MRDO. Survival from acute lymphocytic leukemia in children in the city of São Paulo, Brazil. Cad Saúde Pública. 2020;36(3). https://doi.org/10.1590/0102-311X00008019
https://doi.org/10.1590/0102-311X0000801...
,99 Dong Y, Shi O, Zeng Q, Lu X, Wang W, Li Y, et al. Leukemia incidence trends at the global, regional, and national level between 1990 and 2017. Exp Hematol Oncol. 2020;9:14. https://doi.org/10.1186/s40164-020-00170-6
https://doi.org/10.1186/s40164-020-00170...
,2020 Hofsefh LJ. Getting rigorous with scientific rigor. Carcinogenesis. 2018;39(1):21-5. https://doi.org/10.1093/carcin/bgx085
https://doi.org/10.1093/carcin/bgx085...
,2424 Lomonaco LA, Koifman RJ, Freire C. Clinical epidemiological profile and survival of hospital cases of acute leukemia in a reference hospital in Rio Branco: Acre, 2007-2014. Cad Saúde Colet. 2021;29(3). https://doi.org/10.1590/1414-462X202129030550
https://doi.org/10.1590/1414-462X2021290...
,2525 Leisch M, Jansko B, Zaborsky N, Greil R, Pleyer L. Next Generation Sequencing in AML-On the Way to Becoming a New Standard for Treatment Initiation and/or Modulation? Cancers (Basel). 2019;11(2). https://doi.org/10.3390/cancers11020252
https://doi.org/10.3390/cancers11020252...
,2626 Damlaj M, Fakih RE, Hashmi SK. Evolution of survivorship in lymphoma, myeloma and leukemia: Metamorphosis of the field into long term follow-up care. Blood Rev. 2019;33:63-73. https://doi.org/10.1016/j.blre.2018.07.003
https://doi.org/10.1016/j.blre.2018.07.0...
).

Regarding the level of health care, the findings of this study reveal that onco-hematological care is concentrated at medium and high complexity levels, since cancer is a type of disease that requires adequate equipment and human resources to provide specialized care(2727 Lopes-Júnior LC, Lima RAG. Cuidado ao câncer e a prática interdisciplinar. Cad Saúde Pública. 2019;35(1):1-3. https://doi.org/10.1590/0102-311X00193218
https://doi.org/10.1590/0102-311X0019321...
-2828 Jaggi LMA, Canabarro ST, Rabin EG, Caregnato RCA. Strategic management promoting teaching and service integration: multidisciplinary residency deployment in Onco-Hematology. Interface. 2018;22(66):939-49. https://doi.org/10.1590/1807-57622016.0906
https://doi.org/10.1590/1807-57622016.09...
).

However, Primary Health Care (PHC) plays a fundamental role in health promotion, focusing on cancer protection factors, disease screening, early diagnosis, regulation of patients for other levels of care and training of teams, in addition to coordinating and maintaining the care of users with cancer(2929 Lombardo MS, Popim RC. Access of the patient to the cancer network under the “Sixty-Day Law”: Integrative Review. Rev Bras Enferm. 2020;73(5):1-9. https://doi.org/10.1590/0034-7167-2019-0406
https://doi.org/10.1590/0034-7167-2019-0...
).

However, it is observed that there are difficulties in providing care to cancer patients in PHC services, due to the need for qualification of professionals involved in the process of identifying signs and symptoms, referral to early diagnosis and treatment, users’ unequal access to available services and delays in carrying out tests and returning for consultations(2929 Lombardo MS, Popim RC. Access of the patient to the cancer network under the “Sixty-Day Law”: Integrative Review. Rev Bras Enferm. 2020;73(5):1-9. https://doi.org/10.1590/0034-7167-2019-0406
https://doi.org/10.1590/0034-7167-2019-0...
). Thus, it is necessary to improve actions at this level of health care, to minimize the delay in diagnosis, in the provision of care and in the use of resources, in order to guarantee comprehensive care for patients with hematological malignancies.

In this regard, early diagnosis increases success in treatment and chances of cure. Nevertheless, in pediatric leukemia(3030 Bezerra WSP, Ferreira Júnior MA, Azevedo IC, Cardoso M P, Cardoso AIQ, Frota OP, et al. Clinical and epidemiological profile of children and adolescents submitted to the hematopoietic cell transplantation. Biosci J. 2019;35(5):1622-32. https://doi.org/10.14393/BJ-v35n5a2019-36227
https://doi.org/10.14393/BJ-v35n5a2019-3...
-3131 Creutzig U, van den Heuvel-Eibrink MM, Gibson B, Dworzak MN, Adachi S, Bont E, et al. Diagnosis and management of acute myeloid leukemia in children and adolescents: recommendations from an international expert panel. Blood. 2012;120(16):3187-205. https://doi.org/10.1182/blood-2012-03-362608.
https://doi.org/10.1182/blood-2012-03-36...
), where primary prevention is not possible, related to modifiable factors(3232 Tüfekçi O, Koçak U, Kaya Z, Yenicesu I, Albayrak C, Albayrak D, et al. Juvenile myelomonocytic leukemia in turkey: a retrospective analysis of sixty-five patients. Turk J Haematol. 2018;35(1):27-34. https://doi.org/10.4274/tjh.2017.0021
https://doi.org/10.4274/tjh.2017.0021...
), often recommended to adults, such as smoking, alcoholism, sedentary lifestyle and other lifestyle habits, the importance of identifying the various technologies developed for the investigation of the disease is emphasized(3333 Silva FF, Latorre MRDO. Survival from acute lymphocytic leukemia in children in the city of São Paulo, Brazil. Cad Saúde Pública. 2020;36(3):e00008019. https://doi.org/10.1590/0102-311X00008019
https://doi.org/10.1590/0102-311X0000801...
).

Another aspect of remarkable relevance is supportive care(3434 Resick JM, Sefcik C, Arnold RM, LeBlanc TW, Bakitas M, Rosenzweig MQ, et al. Primary palliative care for patients with advanced hematologic malignancies: a pilot trial of the SHARE intervention. J Palliat Med. 2020;24(6):820-29. https://doi.org/10.1089/jpm.2020.0407
https://doi.org/10.1089/jpm.2020.0407...
), since it minimizes complications(3535 Gurney M, O’Dwyer M. Realizing Innate Potential: CAR-NK Cell therapies for acute myeloid leukemia. Cancers (Basel). 2021;13(7):1568. https://doi.org/10.3390/cancers13071568
https://doi.org/10.3390/cancers13071568...
), such as high risk of infections, cachexia, mucositis, depression, loss of social function and other side effects of treatment and impairment caused throughout cancer(3636 Goswami P, Oliva EN, Ionova T, Else R, Kell J, Fielding AK, et al. Quality-of-life issues and symptoms reported by patients living with haematological malignancy: a qualitative study. Therapeutic Ther Adv Hematol. 2020;11:1-14. https://doi.org/10.1177/2040620720955002
https://doi.org/10.1177/2040620720955002...
,3737 Azoulay E, Shimabukuro-Vornhagen A, Darmon M, von Bergwelt-Baildon M. Critical Care Management of Chimeric Antigen Receptor T Cell-related Toxicity. Be Aware and Prepared. Am J Respir Crit Care Med. 2019;200(1):20-23. https://doi.org/10.1164/rccm.201810-1945ED
https://doi.org/10.1164/rccm.201810-1945...
,3838 Olin RL. Delivering intensive therapies to older adults with hematologic malignancies: strategies to personalize care. Hematology Am Soc Hematol Educ Program. 2019;2019(1):63-70. https://doi.org/10.1182/hematology.2019001300
https://doi.org/10.1182/hematology.20190...
,3939 Pagano L, Busca A, Candoni A, Criscuolo M, Giovanni DPM, Fianchi L, et al. Risk of infection in elderly patients with AML and MDS treated with hypomethylating agents. Acta Biomed. 2018;89(suppl 11):5-39. https://doi.org/10.23750/abm.v89i11-S.7988
https://doi.org/10.23750/abm.v89i11-S.79...
). In addition, it enables the experience of the cancer coping process with better quality of life and better response to malignancy treatment(4040 Silva DA. Cancer patients and spirituality: an integrative review. Rev Cuid. 2020;11(3):e1107. https://doi.org/10.15649/cuidarte.1107
https://doi.org/10.15649/cuidarte.1107...
-4141 Talati C, Frantz D, Lubas A, Salamanca C, Tobon K, Kubal T. How I treat newly diagnosed acute myeloid leukemia in an outpatient setting: a multidisciplinary team perspective. Future Oncol. 2020;16(7):281-91. https://doi.org/10.2217/fon-2019-0781
https://doi.org/10.2217/fon-2019-0781...
).

From this perspective, it is still necessary to infer a greater focus of the studies in the curative process, to the detriment of the detection and care directed to post-treatment. With this, there is a growing increase in cancer survivors, from the development and success of anticancer therapies(4242 Shakeel S, Tung J, Rahal R, Finley C. Evaluation of factors associated with unmet needs in adult cancer survivors in Canada. JAMA Netw Open. 2020;3(3):e200506. https://doi.org/10.1001/jamanetworkopen.2020.0506
https://doi.org/10.1001/jamanetworkopen....
).

However, the mortality rate for hematological malignancies is still high(77 Silva FF, Latorre MRDO. Survival from acute lymphocytic leukemia in children in the city of São Paulo, Brazil. Cad Saúde Pública. 2020;36(3). https://doi.org/10.1590/0102-311X00008019
https://doi.org/10.1590/0102-311X0000801...
,4343 Mehlis K, Bierwirth E, Laryionava K, Mumm F, Heussner P, Winkler EC. Late decisions about treatment limitation in patients with cancer: empirical analysis of end-of-life practices in a haematology and oncology unit at a German university hospital. ESMO Open. 2020;5(5). https://doi.org/10.1136/esmoopen-2020-000950
https://doi.org/10.1136/esmoopen-2020-00...
-4444 Odejide OO, Uno H, Murillo A, Tulsky JA, Abel GA. Goals of care discussions for patients with blood cancers: association of person, place, and time with end-of-life care utilization. Cancer. 2020;126(3):515-22. https://doi.org/10.1002/cncr.32549
https://doi.org/10.1002/cncr.32549...
). Thus, palliative care aims to improve care during the final life trajectory and should be integrated in a timely manner in standard oncological care. Nevertheless, the implementation of intensive care until the end of life and frequent hospital deaths(2222 Verhoef MJ, Nijs EJM, Ootjers CS, Fiocco M, Fogteloo AJ, Heringhaus C, et al. End-of-life trajectories of patients with hematological malignancies and patients with advanced solid tumors visiting the emergency department: the need for a proactive integrated care approach. Am J Hosp Palliat Care. 2029;37(9):692-700. https://doi.org/10.1177/1049909119896533
https://doi.org/10.1177/1049909119896533...
,4545 Freeman AT, Wood WA, Fox A, Hanson LC. Access to palliative care consultation and advance care planning for adults with high-risk leukemia. J Palliat Med. 2018;21(2):225-28. https://doi.org/10.1089/jpm.2017.0097
https://doi.org/10.1089/jpm.2017.0097...
-4646 Porta-Sales J, Guerrero-Torrelles M, Moreno-Alonso D, Sarrà-Escarré J, Clapés-Puig V, Trelis-Navarro J, et al. Is early palliative care feasible in patients with multiple myeloma? J Pain Symptom Manage. 2017;54(5):692-700. https://doi.org/10.1016/j.jpainsymman.2017.04.012
https://doi.org/10.1016/j.jpainsymman.20...
)is still observed.

This is associated with the complex nature of hematological malignancies and their treatment, delays in end-of-life discussions, lack of integration of palliative care services and barriers at home for the patient to experience the end of life at home(2222 Verhoef MJ, Nijs EJM, Ootjers CS, Fiocco M, Fogteloo AJ, Heringhaus C, et al. End-of-life trajectories of patients with hematological malignancies and patients with advanced solid tumors visiting the emergency department: the need for a proactive integrated care approach. Am J Hosp Palliat Care. 2029;37(9):692-700. https://doi.org/10.1177/1049909119896533
https://doi.org/10.1177/1049909119896533...
).

On the other hand, increased survival has implied a new demand for post-treatment care that is not yet met by health services, as studies reveal a high prevalence of unmet needs in this population, such as concerns about changes in concentration and memory, fatigue, change in sexual activity, anxiety, depression, and change in body image(4242 Shakeel S, Tung J, Rahal R, Finley C. Evaluation of factors associated with unmet needs in adult cancer survivors in Canada. JAMA Netw Open. 2020;3(3):e200506. https://doi.org/10.1001/jamanetworkopen.2020.0506
https://doi.org/10.1001/jamanetworkopen....
,4747 Tsatsou I, Konstantinidis T, Kalemikerakis I, Adamakidou T, Vlachou E, Govina O. Unmet supportive care needs of patients with hematological malignancies: a systematic review. Asia Pac J Oncol Nurs. 2020;8(1):5-17. https://doi.org/10.4103/apjon.apjon_41_20
https://doi.org/10.4103/apjon.apjon_41_2...
-4848 Herrmann A, Mansfield E, Tzelepis F, Lynagh M, Hall A. Use of the supportive care framework to explore haematological cancer survivors' unmet needs: a qualitative study. BMC Health Serv Res. 2020;20(1):1-13. https://doi.org/10.1186/s12913-020-05927-7
https://doi.org/10.1186/s12913-020-05927...
).

Thus, there is a need for changes in the care of patients with hematological cancer. The determination of a CL that systematizes the therapeutic itinerary of these patients can minimize the existing gaps in the RAS and promote a safe, quality and timely care delivery that can provide a longer survival time(4949 Delazeri S, Pasquini R, Castro AS, Pontes L, Gomes IM, Maluf EMPC, et al. Therapeutic itinerary of hematological patients: the importance of early diagnosis. Res, Soc Develop. 2022;11(4). https://doi.org/10.33448/rsd-v11i4.27670
https://doi.org/10.33448/rsd-v11i4.27670...
).

Study limitations

A limitation of this study is the difficulty in accessing articles that are unavailable in full because they do not meet this criterion, a fact that may have led to the loss of publications that could enrich the findings of this study.

Contributions to nursing and health

The present study brings relevant contributions to health, especially in the field of onco-hematology, by highlighting the particularities of the elements that can compose a CL to systematize the services and care provided to patients.

It is worth emphasizing the importance of the multidisciplinary team, especially nursing, within this context, as it is the most present professional category throughout the care process. and, thus, with greater opportunities to identify patients’ health-disease needs, outline and make the best decisions and conducts for the implementation of CL, when considering the particularities of each case.

CONCLUSIONS

In view of the findings, this research achieved the proposed objective and presented the main elements that can support the proposition of a CL for assistance to onco-hematologic patients, when it summarized important aspects about diagnosis, treatment, supportive care, palliative care and post-treatment assistance.

Overall, these patients face several obstacles to achieving specialized care, given the complexity surrounding the diagnosis and treatment of hematological malignancies, as well as difficulties that are imposed in relation to access and continuity of care in the network, which often implies an unfavorable outcome and death.

To this end, this issue needs to be addressed in new research, seeking to raise evidence to base the practice of health professionals and the dynamics of health services, based on the needs presented, associated with the updating and training of health professionals with new knowledge.

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Edited by

EDITOR IN CHIEF: Álvaro Sousa
ASSOCIATE EDITOR: Priscilla Valladares Broca

Publication Dates

  • Publication in this collection
    06 Feb 2023
  • Date of issue
    2023

History

  • Received
    10 Mar 2022
  • Accepted
    02 Oct 2022
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