Quality of Life and Associated Factors in Japanese Children With Inborn Errors of Metabolism and Their Families
J. inborn errors metab. screen
;
6: 170019, 2018. tab
Article
in English
|
LILACS-Express
| LILACS
| ID: biblio-1090961
ABSTRACT
Abstract To reveal the associated factors of quality of life (QoL) in children with inborn errors of metabolism (IEM), their siblings, and their primary caregivers and partners, we conducted an anonymous questionnaire survey in Japan. Descriptive, correlation, and multiple regression analyses were performed. Fifty-six children with IEM, 35 siblings, 143 primary caregivers, and 86 partners completed our questionnaires. There were significant positive correlations between higher QoL in children with IEM and lower disease influence (r »0.46) and higher perceived emotional support (r »0.67). We could not find any associated factor of siblings' QoL. Lower parental distress, higher family empowerment, and higher household income contributed to higher QoL in primary caregivers (adjusted R2 » 0.636). Higher household income, lower anxiety about childrearing, and higher satisfaction in the relationship with the child and entire family contributed to higher QoL of partners (adjusted R2 » 0.398). We concluded that developing effective interventions to improve QoL is needed for the entire family in future outpatient settings.
Full text:
Available
Index:
LILACS (Americas)
Type of study:
Risk factors
Language:
English
Journal:
J. inborn errors metab. screen
Journal subject:
Medicina Cl¡nica
/
Patologia
Year:
2018
Type:
Article
Affiliation country:
Japan
Institution/Affiliation country:
Seiiku Iryo Kenkyu Center/JP
/
University of Tsukuba/JP
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