{"title":"Palliative care needs of patients with hematologic malignancies and family caregivers and challenges of palliative care provision in Asia: A review of evidence","authors":"Yupawadee Kantabanlang , Cheng-Pei Lin , Kittikorn Nilmanat , Ping Guo","doi":"10.1053/j.seminhematol.2023.07.002","DOIUrl":"10.1053/j.seminhematol.2023.07.002","url":null,"abstract":"Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of patients with hematologic malignancies in Asia were identified. This review provides an overview of current evidence on the experiences and palliative care needs of patients with hematologic malignancies and their families and the barriers and challenges of integrating palliative care into hematology care in Asia. Patients with hematologic malignancies who received palliative care could benefit from less aggressive end-of-life treatments. However, the uncertain and variable nature of the prognosis and illness trajectories of hematologic malignancies increase the difficulties of integrating palliative care into hematologic care. Patients and their families are often referred to palliative care services late, which leaves a short window for palliative care teams to provide holistic needs assessment and person-centered care for those who need it. In addition, cultural differences in medical decision-making patterns and complex social norms and interactions among patients, families, and healthcare staff make it even more challenging to initiate palliative care conversations in Asia. Future research should focus on the development and evaluation of culturally appropriate palliative care for patients with hematologic malignancies and their family caregivers in Asia, given that the low rate of service intake and poor public awareness of the important role of palliative care in disease trajectories were reported. The socio-cultural context surrounding individuals should be taken into consideration to ensure the provision of person-centered care for this group of patients. Digital health could be one of the possible solutions forward to address local needs and challenges.","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 220-225"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000550/pdfft?md5=d02193cb245ff3dd12fb337015a070ad&pid=1-s2.0-S0037196323000550-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10273670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Debate: Should the loss of disability adjusted life years (DALY) define the focus of Global Hematology?","authors":"David J. Roberts , Aggrey Dhabangi","doi":"10.1053/j.seminhematol.2023.09.001","DOIUrl":"10.1053/j.seminhematol.2023.09.001","url":null,"abstract":"<div><p>Setting priorities in healthcare is always contentious given the array of possible services at primary, secondary, and tertiary levels of care, not to mention potential public health interventions. The central goals in global policy have been reducing inequity within and between countries, protecting vulnerable groups (particularly women and children) and reducing the major communicable diseases which have historically been a major burden in lower- and middle-income countries. Here limited relative and absolute spending on healthcare have spurred a series of initiatives in Global Health over the last 50 years which have led to significant gains in measures of morbidity and mortality.</p><p>Against this background there remains the continuing question of how to adapt current medical practice in higher income countries for training and planning of services in lower- and middle-income countries. Here, the historical development of Global Health is outlined, and lessons drawn from the surveys of the global burden of disease and health economic analysis to understand how we can apply these principles to define Global Hematology.</p><p>It remains likely that in lower-income countries effort should be concentrated on developing laboratory services and blood transfusion, to allow safe and effective support for the assessment of treatment of anemia, sickle cell disease, maternal and child health and urgent surgery and obstetric services. However, the principles of Global Health, could also be used for hematological malignancies to develop a framework for Global Hematology for all settings.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 182-188"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000719/pdfft?md5=01a879d8520949e2a9404160a1c0ca58&pid=1-s2.0-S0037196323000719-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49681996","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The future of aplastic anemia treatment in Brazil: Lessons learned for global hematology","authors":"Rodrigo T. Calado","doi":"10.1053/j.seminhematol.2023.09.002","DOIUrl":"10.1053/j.seminhematol.2023.09.002","url":null,"abstract":"<div><p>Aplastic anemia (AA) is a rare serious hematologic disorder caused by hematopoietic stem cell failure in maintaining hematopoiesis. AA is virtually fatal if not treated, and diagnosis and therapy require extensive hematologic infrastructure. Academic medical centers in Brazil have continuously and significantly contributed to diagnostic tools and therapy development, from novel transplant strategies to drug combinations and implementation science in the national public health system. In the present review, we discuss how the collaborative effort among academic centers in hematology has contributed to improving health care for patients with aplastic anemia. We also discuss what needs are still unmet and how to overcome these challenges.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 200-203"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000720/pdfft?md5=d33844a46c2bac667fdb1d6a743cbccd&pid=1-s2.0-S0037196323000720-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41127002","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Setting up a network of comprehensive care for patients with chronic myeloid leukemia: Lessons learned from Tanzania","authors":"Ahlam Nasser , Hamisa Iddy","doi":"10.1053/j.seminhematol.2023.06.002","DOIUrl":"10.1053/j.seminhematol.2023.06.002","url":null,"abstract":"<div><p>Over the last 2 decades, the introduction of targeted therapies and the advances in the detection of <em>BCR::ABL1</em> oncogene have dramatically improved comprehensive care for patients with Chronic myeloid leukemia (CML). The once deadly malignancy has now transformed into a chronic disease with an overall patient survival approaching that of the age-matched general population. While excellent prognoses have been reported among CML patients in high-income countries, it is unfortunately not the same for those living in low and middle-income (LMIC) countries such as Tanzania. This disparity is largely contributed by barriers associated with the provision of comprehensive care including early diagnosis, access to treatment, and regular monitoring of the disease. In this review, we will share our experiences and lessons learned in setting up a network of comprehensive care for patients with CML in Tanzania.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 204-208"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000471/pdfft?md5=679d3c885e6933e0cadbb597b2037baf&pid=1-s2.0-S0037196323000471-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9767702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
María José Mela Osorio, Carolina Pavlovsky, Miguel Arturo Pavlovsky
{"title":"Inequalities in access to treatment in Argentina: Differences in management of CLL and multiple myeloma?","authors":"María José Mela Osorio, Carolina Pavlovsky, Miguel Arturo Pavlovsky","doi":"10.1053/j.seminhematol.2023.07.001","DOIUrl":"10.1053/j.seminhematol.2023.07.001","url":null,"abstract":"<div><p>Health equity is today an important objective to evenly reach the population among different health care systems. This article will focus on diagnosis and treatment access inequalities in Argentina.</p><p>Although different aspects must be optimized to overcome access barriers worldwide, access inequalities in some regions of Argentina may depend basically on the type of health coverage or insurance. Health care in Argentina is divided into Public, Social security and Private care systems. Access to diagnosis and disease monitoring will vary according whether the patient is under each of these systems. Reducing inequalities may help target some important aspects not covered today and that may directly impact patients' outcome. Disparities in health cancer care were analyzed according to Public, Social security and Private sectors. A disadvantage in resource access, inadequate funding and limited medical infrastructures are common characteristics of the public health care systems. In our country the disparity between the public and private sectors in terms of timely diagnosis, stage of disease at diagnosis, accuracy of diagnosis, access to novel agents and transplantation is notorious, with the public sector lagging behind in access to diagnostic and treatment resources. While the Private sector has treatment outcomes comparable to those of high-income countries, challenges remain in the Public sector for patients who rely on early and accurate diagnosis and timely access to treatment. There is an urgent need to provide equitable care for multiple myeloma and CLL patients and reduce the emotional and financial consequences of the disease for the patient.</p><p>A survey about diagnosis and therapeutic resources was conducted between April and May 2023 among large centers in the Public, Social security and Private systems. A total of 49 hematologists from 31 institutions from five provinces of Argentina participated in the survey. We observed differences between the different systems with more access for the Private system on genetic diagnosis (FISH-IGVH access). More CLL patients in the public and social security systems were treated with CIT reflecting the inaccessibility in these sectors of more expensive targeted therapies rather than a gap in information since the Public centers surveyed were large hospitals with knowledgeable physicians. Access to different treatments both in first-line and relapsed settings was more equitable in the treatment of multiple myeloma for the different systems with the exception of access to daratumumab in first-line that was extremely infrequent in the public coverage. With increasing cost and treatment complexity as the introduction of CARTs and BITEs for CLL and MM, the gap will probably deepen more if the problem is not treated comprehensively by all the actors of the health sector: government, physicians, patients' organizations and pharmaceutical companies.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 209-214"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000549/pdfft?md5=74ca2ab37ff8f79f3c026b7a4d7af25b&pid=1-s2.0-S0037196323000549-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10255087","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The case for prioritizing malignant hematology services in low- and middle-income countries","authors":"Satish Gopal","doi":"10.1053/j.seminhematol.2023.08.005","DOIUrl":"10.1053/j.seminhematol.2023.08.005","url":null,"abstract":"<div><p>A clear case for can be made for prioritizing malignant hematology services in low- and middle-income countries based on large public health burden, convincing demonstrations of cure and control, innovation opportunities with likely worldwide implications, and sizable returns on investment for health systems and societies. We must now ensure that need and opportunity are matched by commensurate levels of investment and attention.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 189-191"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000707/pdfft?md5=1ade57a2a0a4092714809b20f34ce37f&pid=1-s2.0-S0037196323000707-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10301512","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Eduardo Flávio Oliveira Ribeiro , Ana Amélia Morais de Lacerda Mangueira Belmiro , Lenisa Cezar Vilas Boas , Carsten Utoft Niemann
{"title":"How to set up a clinical research center in Brazil, as an example of a middle-income country","authors":"Eduardo Flávio Oliveira Ribeiro , Ana Amélia Morais de Lacerda Mangueira Belmiro , Lenisa Cezar Vilas Boas , Carsten Utoft Niemann","doi":"10.1053/j.seminhematol.2023.08.004","DOIUrl":"10.1053/j.seminhematol.2023.08.004","url":null,"abstract":"<div><p>In health care, innovation is a core part of the process that pushes advances forward. Drug and device development follow a step-by-step process from the discovery of a molecule to the final product. While patent filing and preclinical studies are usually performed by academic centers or start-ups, the clinical development is usually performed by pharmaceutical companies. To assess safety, efficacy and fulfil regulatory demands, clinical trials must be performed in sequential Phase I, II, and III stages prior to market access. In this context, clinical research centers have been established around the globe, also outside traditional academic centers, aiming to increase the access for patients to participate in clinical trials and the capacity for clinical development. The increasing number of clinical trial sites across the world, gives pharmaceutical companies, investigators and developers an improved access to properly test the exponentially increasing number of potential medicinal products and treatment approaches in trials in different parts of the world. Historically, Low- and Middle-Income Countries (LMIC) did not significantly take part in clinical trial development. As participation in all steps of clinical research provides earlier access to novel treatment options in LMIC along with creating data on efficacy and toxicity within more diverse populations, it is warranted to improve clinical trial access in LMIC. With the goal to provide input on how to tackle the challenges during the built of a clinical research center, we here describe the experience from setting up a clinical trial unit within a private hospital network in Brasília, Brazil, a Middle-Income country, to provide inspiration, “how to” knowledge and a recipe for those with a similar road ahead in LMIC.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 233-242"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000690/pdfft?md5=eb24959eb8709e2753f2a20c6bac79a4&pid=1-s2.0-S0037196323000690-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41177035","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Current challenges and new approaches to implementing optimal management of sickle cell disease in sub-Saharan Africa","authors":"Mwashungi Ally, Emmanuel Balandya","doi":"10.1053/j.seminhematol.2023.08.002","DOIUrl":"10.1053/j.seminhematol.2023.08.002","url":null,"abstract":"Sickle cell disease (SCD) is the most common life-threatening monogenic disorder in the world. The disease is highly prevalent in malaria endemic areas with over 75% of patients residing in Sub-Saharan Africa (SSA). It is estimated that, without proper care, up to 90% of children with SCD will not celebrate their fifth birthday. Early identification and enrolment into comprehensive care has been shown to reduce the morbidity and mortality related with SCD complications. However, due to resource constraints, the SSA is yet to implement universal newborn screening programs for SCD. Furthermore, care for patients with SCD in the region is hampered by the shortage of qualified healthcare workers, lack of guidelines for the clinical management of SCD, limited infrastructure for inpatient and outpatient care, and limited access to blood and disease modifying drugs such as Hydroxyurea which contribute to poor clinical outcomes. Curative options such as bone marrow transplant and gene therapy are expensive and not available in many SSA countries. In addressing these challenges, various initiatives are ongoing in SSA which aim to enhance awareness on SCD, improve patient identification and retention to care, harmonize the standards of care for SCD, improve the skills of healthcare workers and conduct research on pertinent areas in SCD in the SSA context. Fortifying these measures is paramount to improving the outcomes of SCD in SSA.","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 192-199"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000598/pdfft?md5=88420ef74912b8813dee55a0e41485c5&pid=1-s2.0-S0037196323000598-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41151226","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Bach Quoc Khanh , Vo Thi Thanh Binh , Nguyen Ha Thanh , Dao Phan Thu Huong , Do Thi Thuy , Nguyen Khanh Ha , Richard W. Childs
{"title":"Forging international collaboration and alliances to establish the largest transplant center in the north of Vietnam","authors":"Bach Quoc Khanh , Vo Thi Thanh Binh , Nguyen Ha Thanh , Dao Phan Thu Huong , Do Thi Thuy , Nguyen Khanh Ha , Richard W. Childs","doi":"10.1053/j.seminhematol.2023.08.003","DOIUrl":"10.1053/j.seminhematol.2023.08.003","url":null,"abstract":"<div><p>Through collaboration with international experts, our institution established a highly active and successful hematopoietic stem cell transplant program, providing access to this potentially curative treatment modality for patients with a variety of benign and malignant hematological diseases. The initial development of an autologous stem cell transplant program provided our institution with the infrastructure, equipment, and expertise needed for the subsequent development of an allogeneic stem cell transplant program. Key transplant staff received training from international transplant experts at the NHLBI/NIH, the Mayo Clinic, the Johns Hopkins Hospital, and Nagoya Japan, providing them with the expertise to conduct a variety of different transplant approaches, including PBSC transplants from HLA-matched relatives, unrelated cord blood transplants, haploidentical transplants, and CD34 selected stem cell transplants. Patient characteristics were varied among all groups. The number of allogeneic and autologous transplants performed at the NIHBT has increased steadily every year since the initiation of our transplant program. By 2022, 547 transplant procedures had been performed, including 268 autologous and 279 allogeneic transplants. Allogeneic transplants were performed for both malignant and nonmalignant hematological diseases, with acute leukemia (AL) being the most common indication for allogeneic HCT. The majority of recipients undergoing allogeneic transplantation received G-CSF mobilized PBSC allografts from either HLA identical or haplo-identical relatives, with a smaller percentage of patients receiving a UCB transplant or a PBSC allograft that had been CD34+ selected. Amongst the 279 recipients of an allogeneic transplant, mortality rates within day 100 and beyond day 100 were 12.6% and 26.2% respectively. Overall survival (OS) and event-free survival at 5 years in benign and malignant subgroups were 81% and 73% vs 52% and 48% respectively. Through collaboration with international transplant experts, the National Institute of Hematology and Blood Transfusion in Hanoi has stood up the most active transplant center in the northern region of Vietnam. Patients coming from low-income financial backgrounds are now able to receive a variety of different state-of-the-art transplant approaches that are affordable and have been associated with excellent long-term outcomes.</p></div>","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Pages 243-250"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S0037196323000689/pdfft?md5=66822187ba53e03ea1d954df08ef043c&pid=1-s2.0-S0037196323000689-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10309883","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"outside front cover, PMS 8883 metallic AND 4/C","authors":"","doi":"10.1053/S0037-1963(23)00084-7","DOIUrl":"10.1053/S0037-1963(23)00084-7","url":null,"abstract":"","PeriodicalId":21684,"journal":{"name":"Seminars in hematology","volume":"60 4","pages":"Page CO1"},"PeriodicalIF":3.6,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135782083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}