巴西杜申尼肌肉缩症护理的估计成本
Nayê Balzan Schneider1,2, Erica Caetano Roos3, Ana Lúcia Portella Staub4
1National Institute of Science and Technology for Health Technology Assessment (IATS)- CNPq/Brazil (project: 465518/2014-1), Porto Alegre, Brazil.
Orphanet journal of rare diseases
|June 22, 2023
概括
在巴西,杜申肌肉缩症 (DMD) 治疗的年度费用为每名患者17,121雷亚尔美元,家庭护理占费用的92%. 这项研究强调了拉丁美洲罕见疾病的重大经济负担.
科学领域:
- 卫生经济学 卫生经济学
- 罕见疾病 罕见疾病
- 杜恩肌肉发育不良 (DMD)
背景情况:
- 罕见疾病的经济负担被研究不足,影响健康政策的制定.
- 杜氏肌肉发育不良 (DMD) 是一种流行形式的肌肉发育不良,随着管理策略的不断发展.
- 关于拉丁美洲的DMD成本的数据有限,需要进行区域成本评估.
研究的目的:
- 评估巴西每年每名患有DMD的患者的医院,家庭护理和运输费用.
- 提供关键的经济数据,用于对新兴经济体罕见疾病的卫生政策决策.
主要方法:
- 采用微成本计算技术来准确测量成本.
- 包括来自巴西接受DMD治疗的27名患者的数据.
主要成果:
- 每名患者的年平均成本为17121瑞拉元.
- 家庭护理占总成本的92%,其次是医院 (6%) 和运输 (2%).
- 与非轮椅使用者相比,轮椅使用者增加了23%的成本,这表明疾病负担更高.
结论:
- 这项研究是拉丁美洲第一个使用微成本计算量化DMD成本的研究.
- 准确的成本数据对于卫生管理人员制定罕见病可持续政策至关重要.
- 调查结果强调了DMD在巴西的重大经济影响,特别是家庭护理需求.
相关概念视频
Satellite Stem Cells and Muscular Dystrophy
2.0K
Satellite stem cells or myosatellite cells are quiescent stem cells that Alexander Mauro first identified in 1961. These cells are located between the sarcolemma, the plasma membrane of muscle fibers, and the basal lamina, the connective tissue sheath covering it. These mononucleated cells are activated in response to muscle injury, can transform into myoblasts, and may form or repair muscle fibers. Myosatellite cells can provide additional myonuclei for muscle regeneration or return to a...
2.0K
Cystic Fibrosis: Management
199
Cystic fibrosis (CF) is an autosomal recessive disorder that predominantly affects individuals of Northern European descent, occurring at a rate of 1 in 3500. It is caused by a genetic mutation in a gene on chromosome 7, most commonly the ΔF508 mutation, that codes for the cystic fibrosis transmembrane conductance regulator (CFTR) protein. This results in thicker mucus secretions and obstruction pathologies in multiple organs, including the lungs and sinuses.
Sinus disease and chronic...
Sinus disease and chronic...
199
Disorders of the Skeletal Muscle
999
The clinical conditions affecting the skeletal muscle tissue are broadly categorized as musculoskeletal and neuromuscular disorders.
Musculoskeletal disorders
Musculoskeletal disorders involve injuries and conditions affecting the skeletal muscles and associated connective tissues. These disorders can arise from acute biomechanical stresses or chronic overuse and can occur across different age groups. Common injuries include sprains, fractures, and muscular strains, often resulting from...
Musculoskeletal disorders
Musculoskeletal disorders involve injuries and conditions affecting the skeletal muscles and associated connective tissues. These disorders can arise from acute biomechanical stresses or chronic overuse and can occur across different age groups. Common injuries include sprains, fractures, and muscular strains, often resulting from...
999


