Cost of hemophilia A in Turkey: an economic disease burden analysis

Malhan, S; Öksüz, E; Antmen, Bülent; Ar, Muhlis Cem; Balkan, Can; Kavaklı, Kaan

doi:10.1080/13696998.2021.1965388

Cited by 9 publications

(11 citation statements)

References 29 publications

(37 reference statements)

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“…The HERO 20 study, conducted in developed and developing countries such as China and Algeria, which could be more comparable with our study, stated that 63% of parents had problems with employment, causing an economic impact.A study estimated that nonformal caregivers in Turkey accompanied 55% of patients with hemophilia. 18 This rate is even higher during childhood, which can be a possible explanation for the unemployment of 1 parent of children with hemophilia.…”

Section: Discussionmentioning

confidence: 99%

“…The mean number of working days missed for a patient’s caregiver due to hemophilia A-related medical issues was 43.7 days/year, which was less than a recent study from Turkey that reported missed working days as 98.4 days/year. 18 In a study comparing caregivers’ employment in the UK, Sweden, and Canada, the percentage of caregivers of children with hemophilia who worked full time was less than that of caregivers of healthy children. 19 In a study conducted in European HTCs, including the Ege University HTC from Turkey, using the HEMOCAB questionnaire, most caregivers worked full time (39.2%) or part-time (35%).…”

Section: Discussionmentioning

confidence: 99%

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Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey

Ersoy,

Ertekin,

Dikme

2023

Turkish Archives of Pediatrics

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Objective: This study aims to evaluate the caregiver burden of parents of hemophilia patients and related factors in the southeast region of Turkey, where access to a regular healthcare facility is more complicated than in other areas. Materials and Methods: Twenty-six caregivers of patients with hemophilia were consecutively enrolled in this non-interventional study. Caregiver burden is measured using the “Hemophilia-Associated Caregiver Burden Scale” (HEMOCAB). Results: Hemophilia affects 65.4% of caregivers emotionally, and 92.3% feel the burden caused by financial problems related to hemophilia. The perception of the patients by caregivers was negative in the groups of low educational degree and unstable employment status ( P = .037 and P = .017, respectively). The employment status and job changes influence the caregiver burden because of hemophilia ( P = .034 and P = .001, respectively). The groups of those who spent greater than 5 hours for transportation to the hemophilia treatment center (HTC) had a higher burden ( P = .001). Multiple linear regression analysis analyzed variables affecting HEMOCAB, frequency, and burden total scores. The model created with the burden total score was statistically significant ( P = .047). Conclusion: The main factors affecting caregiver burden were educational status, working conditions, and economic difficulties, as well as the length of infusion times and transfer to HTCs. There is a need to develop socioeconomic policies related to these problems.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey

Ersoy,

Ertekin,

Dikme

2023

Turkish Archives of Pediatrics

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“…RD patients and their families are therefore at higher risk of experiencing poor quality of life, increased mental health issues, more social isolation, and poor work-life balance [ 14 , 69 , 76 , 80 ]. Notably, the impact RDs have on the lives of patients and their caregivers is further exacerbated by the lack or limited reimbursement of orphan drugs and the consequent burden of out-of-pocket expenses on RDs households [ 69 , 81 , 82 , 83 ]. While the next section will include a more detailed account of the social and psychological impact of RDs on patients and their families, it is important to highlight the need for a more comprehensive body of RD-related policies that can respond to the multidimensional needs of support and care.…”

Section: Current Situation and Key Challenges Related To Rdsmentioning

confidence: 99%

“… Elaborated by authors based on overviewed literature [ 7 , 12 , 14 , 56 , 58 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 ]. …”

Section: Current Situation and Key Challenges Related To Rdsmentioning

confidence: 99%

Enhancing Equitable Access to Rare Disease Diagnosis and Treatment around the World: A Review of Evidence, Policies, and Challenges

Adachi

El‐Hattab

Jain

et al. 2023

IJERPH

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This document provides a comprehensive summary of evidence on the current situation of rare diseases (RDs) globally and regionally, including conditions, practices, policies, and regulations, as well as the challenges and barriers faced by RD patients, their families, and caregivers. The document builds on a review of academic literature and policies and a process of validation and feedback by a group of seven experts from across the globe. Panelists were selected based on their academic merit, expertise, and knowledge regarding the RD environment. The document is divided into five main sections: (1) methodology and objective; (2) background and context; (3) overview of the current situation and key challenges related to RDs covering six dimensions: burden of disease, patient journey, social impact, disease management, RD-related policies, and research and development; (4) recommendations; and (5) conclusions. The recommendations are derived from the discussion undertaken by the experts on the findings of this review and provide a set of actionable solutions to the challenges and barriers to improving access to RD diagnosis and treatment around the world. The recommendations can support critical decision-making, guiding efforts by a broad range of RDs stakeholders, including governments, international organizations, manufacturers, researchers, and patient advocacy groups.

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“…According to these numbers, rare diseases must affect more than 6 million individuals in Türkiye. Although rare diseases present heterogeneous clinical and genetic features, many of the social and economic obstacles are similar worldwide ( 7 – 9 ). Most of the patients suffer from misdiagnosis, or they even remain undiagnosed for years ( 10 , 11 ).…”

Section: Introductionmentioning

confidence: 99%

Obstacles and expectations of rare disease patients and their families in Türkiye: ISTisNA project survey results

Sahin

Erbilgin

et al. 2023

Front. Public Health

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Rare disease patients constitute a significant part of the healthcare system of all countries. However, the information on the experiences during disease processes and daily life of rare disease patients is still limited. So far, there is a small number of studies conducted in Türkiye, and they mainly cover specific issues like education or anxiety. Here we present a comprehensive survey analysis conducted among the patients and their families within the scope of the Istanbul Solution Platform for Undiagnosed and Rare Diseases-ISTisNA project. A total of 498 individuals responded to the survey, and 58% of the participants answered all questions. The majority of the patients were in the age range of 1–10 years (44.7%), and 91% of all the patients had a precise diagnosis. The diagnosis rate in the first 6 months was 69%, and almost 10% of the patients remained undiagnosed. The mothers were the primary caregivers (72%). Nearly 30% of the caregivers had to quit their jobs and 25% of the patients (0–18 years) had to leave school. Accessing physicians with relevant specialization and reaching treatments/medications/supplements were the two main obstacles the participants mentioned, with a frequency of 81% and 73%, respectively. Around 50% of participants noted that they commonly faced difficulties at work/school and in their social lives. The highest expectation or priority was the establishment of rare disease-specific diagnosis and treatment centers, accurate and detailed information on diseases in the Turkish language, and easy access to physicians, treatments, and supportive therapies. To the best of our knowledge, this is the most comprehensive survey conducted on the rare disease community in Türkiye. These results show that regardless of the country, the individuals affected by rare diseases and their families have similar problems and expectations. On the other hand, regional and country-specific issues are still in the line to be solved. These studies can provide a deeper insight into rare diseases and guide the activities of Türkiye's national rare disease action plan.

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Cost of hemophilia A in Turkey: an economic disease burden analysis

Cited by 9 publications

References 29 publications

Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey

Hemophilia Caregiver Burden in a Low Socioeconomic Region of Turkey

Enhancing Equitable Access to Rare Disease Diagnosis and Treatment around the World: A Review of Evidence, Policies, and Challenges

Obstacles and expectations of rare disease patients and their families in Türkiye: ISTisNA project survey results

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