The changing epidemiology of the ageing thalassaemia populations: A position statement of the Thalassaemia International Federation

Farmakis, Dimitrios; Giakoumis, Anastasios; Angastiniotis, Michael; Eleftheriou, Androulla

doi:10.1111/ejh.13410

Cited by 42 publications

(31 citation statements)

References 54 publications

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“…Thalassaemia patients do not have the same risk of pulmonary infections with sickle cell disease patients but, they may have multiple organ complications, often due to iron overload, including cardiac and hepatic, diabetes mellitus and endocrine disease 2–4 . One particular endocrine complication, adrenal hypofunction, is often not recognized and may render the patient particularly susceptible to severe infections.…”

Section: General Considerations and Level Of Riskmentioning

confidence: 99%

“…This is particularly true for patients living in developing or low‐income countries, where disease‐specific management programmes are lacking and access to modern therapy is limited. On the other hand, therapeutic advances of the past decades have resulted in a significant improvement in the once ominous prognosis of thalassaemia patients, and thus, patients with access to modern treatment modalities and well‐organized follow‐up programmes grow old and face a new spectrum of comorbidities related to ageing 4 . As a result, many haemoglobinopathy patients are at increased risk to develop severe complications in the presence of a comorbidity such as a viral infection.…”

Section: Introductionmentioning

confidence: 99%

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COVID‐19 and thalassaemia: A position statement of the Thalassaemia International Federation

Farmakis

Giakoumis

Cannon³

et al. 2020

European J of Haematology

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Objectives Many patients with haemoglobinopathies, including thalassaemia and sickle cell disease, are at increased risk of developing severe complications from the coronavirus disease 2019 (COVID‐19). Although epidemiologic evidence concerning the novel coronavirus (SARS‐CoV‐2) infection in these patients is currently lacking, the COVID‐19 pandemic represents a significant challenge for haemoglobinopathy patients, their families and their attending physicians. Methods The present statement summarizes the key challenges concerning the management of haemoglobinopathies, with particular focus on patients with either transfusion‐dependent or non‐transfusion‐dependent thalassaemia, identifies the gaps in knowledge and suggests measures and strategies to deal with the pandemic, based on available evidence and expert opinions. Key areas covered include patients’ risk level, adaptation of haemoglobinopathy care, safety of blood transfusions, blood supply challenges, and lifestyle and nutritional considerations. Conclusions The proposed measures and strategies may be useful as a blueprint for other disorders which require regular hospital visits, as well as for the timely adaptation of patient care during similar future pandemics.

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Section: General Considerations and Level Of Riskmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

COVID‐19 and thalassaemia: A position statement of the Thalassaemia International Federation

Farmakis

Giakoumis

Cannon³

et al. 2020

European J of Haematology

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“…These services include the need for regular blood transfusions and iron chelation supported by multi-disciplinary medical collaborations in expert centres 17 as described in the International Guidelines for Clinical Management of Thalassaemia. 18 Such organized multidimensional care has been demonstrated to have converted lethal childhood disorders to chronic conditions of adult life, 19 allowing patients to achieve a near normal life. Scattered minority groups in an environment in which these are rare conditions, may not have access to the expert care that they need.…”

Section: Geographical Distribution In Europementioning

confidence: 99%

Hemoglobin Disorders in Europe: A Systematic Effort of Identifying and Addressing Unmet Needs and Challenges by the Thalassemia International Federation

Angastiniotis

Cannon

Antoniou

et al. 2021

Thalassemia Reports

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Hemoglobin disorders (thalassemia and sickle cell disease) are a group of hereditary anemias that today occur across the world. The recent population movement has led to a steady increase of carriers and patients in all countries of the European Union. Requiring complex monitoring and treatment and, as a consequence, well-organized and nationally coordinated, supported and funded services, these lifelong conditions are now visible to healthcare services in the EU. The purpose of this study is to provide an overview of the current situation pertaining to these disorders, as perceived by the patient/parent community that the Thalassemia International Federation (TIF) represents. The aim is to establish a comprehensive understanding of the situation and unmet needs faced by migrants with thalassemia. The implementation of activities by TIF in 2018-2020 to identify and address these challenges, paves the way to increased awareness, education and policy changes building on international expertise and knowledge that will enable the provision of state-of-art clinical management services thus guaranteeing an improved quality of life. A bird’s eye view of the prevalence of these disorders is presented contributing to the further understanding of challenges met by both patients and healthcare professionals in the receipt and provision of quality healthcare respectively.

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“…Patients with severe forms of this disease require regular blood transfusion and adequate iron chelation therapy to survive as there is no curative treatment for thalassaemias except bone marrow transplantation, which is only available for a limited number of patients due to the high cost and morbidity associated with the procedure [ 4 ]. The survival and quality of life of the patients with transfusion dependent thalassaemia (TDT) have been improved dramatically in high resource countries over the past few decades owing to safe transfusion practice, successful prevention programs and access to modern therapies [ 5 ]. However, the scenario is still very disappointing in the lower resource setting, where most of the children with TDT die before reaching 5 years and the average life expectancy of thalassaemia patients is around 30 years [ 6 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

The parental perspective of thalassaemia in Bangladesh: lack of knowledge, regret, and barriers

Hossain

Hasan

Petrou

et al. 2021

Orphanet J Rare Dis

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Background Thalassaemia, a hereditary haemoglobin disorder, is a major public health concern in some parts of the world. Although Bangladesh is in the world’s thalassaemia belt, the information on this disease is scarce. Additionally, the awareness of this life threatening, but potentially preventable disease is surprisingly poor. However, mass awareness is pivotal for the development of an effective preventive strategy. In this context, the understanding of parental perspectives is essential to grasp the magnitude of the problem. Therefore, this study aimed to investigate the parental knowledge gaps and perceptions regarding thalassemia, the barriers confronted by the parents for caring for their thalassaemic children and their attitude to prenatal screening and prenatal diagnosis. Methods This cross-sectional study was conducted between January 2018 and December 2018 at a dedicated thalassemia hospital located in Dhaka. A structured questionnaire was used for face-to-face interviews with parents of thalassaemic children. Descriptive statistics were used to analyse data. Results Of 365 respondents, nearly all respondents (97%) had not heard about the term, ‘thalassemia’ before the disease was diagnosed in their children; all (100%) were unscreened for carrier status prior to marriage. Mean knowledge scores were significantly higher in respondents with higher income and education. Most respondents (~ 91%) had a guilty feeling for not undergoing premarital screening. Only around 36% of them had heard about prenatal diagnosis. Approximately 25% participants would consider prenatal diagnosis in a future pregnancy, while 70% of them were unsure and only ~ 5% would decline prenatal diagnosis. Only 9.3% mothers had prenatal diagnosis in a previous pregnancy. Nearly 80% of the parents faced difficulty for obtaining blood donors regularly and a similar proportion (~ 81%) of them did not receive support from any organized blood clubs. More than 40% of the parents reported they felt socially stigmatized. Conclusion This study suggests poor parental knowledge regarding thalassaemia including prenatal diagnosis and the challenges faced while caring for their children. These findings would be of paramount importance in planning and devising effective prevention and intervention strategies in Bangladesh as well as other countries with similar sociocultural setting.

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The changing epidemiology of the ageing thalassaemia populations: A position statement of the Thalassaemia International Federation

Cited by 42 publications

References 54 publications

COVID‐19 and thalassaemia: A position statement of the Thalassaemia International Federation

COVID‐19 and thalassaemia: A position statement of the Thalassaemia International Federation

Hemoglobin Disorders in Europe: A Systematic Effort of Identifying and Addressing Unmet Needs and Challenges by the Thalassemia International Federation

The parental perspective of thalassaemia in Bangladesh: lack of knowledge, regret, and barriers

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