Abstract
| Original language | English |
|---|---|
| Pages (from-to) | 2215-2225 |
| Number of pages | 11 |
| Journal | American Journal of Medical Genetics, Part A |
| Volume | 176 |
| Issue number | 10 |
| Early online date | 25 Mar 2018 |
| DOIs | |
| Publication status | Published - Oct 2018 |
| Externally published | Yes |
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The psychosocial impact of 22q11 deletion syndrome on patients and families : A systematic review. / Vo, Oanh Kieu; McNeill, Alisdair; Vogt, Katharina.
In: American Journal of Medical Genetics, Part A, Vol. 176, No. 10, 10.2018, p. 2215-2225.Research output: Contribution to journal › Review article
TY - JOUR
T1 - The psychosocial impact of 22q11 deletion syndrome on patients and families
T2 - A systematic review
AU - Vo, Oanh Kieu
AU - McNeill, Alisdair
AU - Vogt, Katharina
PY - 2018/10
Y1 - 2018/10
N2 - The 22q11 deletion syndrome (22q11DS) is one of the most common genomic disorders in humans, affecting around 1:2,000 to 1: 4,000 people. 22q11DS affects multiple body systems and is associated with multiple physical problems. Given the high rate of physical morbidity associated with the 22q11DS, it was hypothesized that it would exert a high psychosocial impact on patients and their relatives. To investigate this, a systematic review of the literature and narrative synthesis was performed. Three major themes emerged. First, the complex and conflicting emotions experienced by family members resulting from the diagnosis. Second, the pervasive educational and health‐care challenges associated with the diagnosis and third that people affect by 22q11DS strived for individualism. The results of this review help to inform clinical management of families with 22q11DS.
AB - The 22q11 deletion syndrome (22q11DS) is one of the most common genomic disorders in humans, affecting around 1:2,000 to 1: 4,000 people. 22q11DS affects multiple body systems and is associated with multiple physical problems. Given the high rate of physical morbidity associated with the 22q11DS, it was hypothesized that it would exert a high psychosocial impact on patients and their relatives. To investigate this, a systematic review of the literature and narrative synthesis was performed. Three major themes emerged. First, the complex and conflicting emotions experienced by family members resulting from the diagnosis. Second, the pervasive educational and health‐care challenges associated with the diagnosis and third that people affect by 22q11DS strived for individualism. The results of this review help to inform clinical management of families with 22q11DS.
KW - 22q11 deletion syndrome
KW - psychosocial
KW - quality of life
KW - systematic review
U2 - 10.1002/ajmg.a.38673
DO - 10.1002/ajmg.a.38673
M3 - Review article
VL - 176
SP - 2215
EP - 2225
JO - American Journal of Medical Genetics, Part A
JF - American Journal of Medical Genetics, Part A
SN - 1552-4825
IS - 10
ER -