Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy

被引:18
|
作者
Wasilewska, Eliza [1 ]
Malgorzewicz, Sylwia [2 ]
Sobierajska-Rek, Agnieszka [3 ]
Jablonska-Brudlo, Joanna [3 ]
Gorska, Lucyna [1 ]
Sledzinska, Karolina [4 ]
Bautembach-Minkowska, Joanna [5 ]
Wierzba, Jolanta [4 ,6 ,7 ]
机构
[1] Med Univ Gdansk, Dept Allergol & Pulmonol, PL-80211 Gdansk, Poland
[2] Med Univ Gdansk, Dept Clin Nutr, PL-80211 Gdansk, Poland
[3] Med Univ Gdansk, Dept Rehabil Med, PL-80211 Gdansk, Poland
[4] Med Univ Gdansk, Inst Nursing & Midwifery, Dept Internal & Pediat Nursing, PL-80211 Gdansk, Poland
[5] Med Univ Gdansk, Dept Pediat Diabetol & Endocrinol, PL-80211 Gdansk, Poland
[6] Gdansk Med Univ, Ctr Rare Dis, Gdansk, Poland
[7] Univ Hosp Gdansk, Gdansk, Poland
来源
MEDICINA-LITHUANIA | 2020年 / 56卷 / 09期
关键词
duchenne muscular dystrophy; transition process; health needs; YOUNG-ADULTS; HEALTH-CARE; MANAGEMENT; CHILDREN; ADOLESCENTS; VENTILATION; SCOLIOSIS; STATEMENT; THERAPY; FAILURE;
D O I
10.3390/medicina56090426
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Recently, progress has been observed in the knowledge about Duchenne Muscular Dystrophy (DMD), which is a severe and commonly diagnosed genetic myopathy in childhood, historically resulting in early death. Currently, there are a lot of methods available to improve the clinical course of DMD and extend patients' life expectancy to more than 30 years of age. The key issue for DMD patients is the period between 16-18 years of age, which is described as a transition from pediatric- to adult-oriented healthcare. Adolescents and adults with DMD have highly complex healthcare needs associated with long-term steroid usage, orthopedic, ventilation, cardiac, and gastrointestinal problems. The current paper provides a comprehensive overview of special healthcare needs related to the transfer of a patient with DMD from child-oriented to adult-oriented care. Additionally, the need to organize effective care for adults with DMD is presented.
引用
收藏
页码:1 / 13
页数:13
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