Quality of life in caregivers of children and adolescents with Osteogenesis Imperfecta

Health and Quality of Life Outcomes

Ida V D Schwartz³  Neusa Sica da Rocha¹  Têmis M Félix²  Ana Paula Vanz² 

[1] Postgraduate Program in Medical Sciences: Psychiatry, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil;Medical Genetics Service, Hospital de Clínicas de Porto Alegre, Porto Alegre, Brazil;Department of Genetics, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil

关键词: WHOQOL-BREF;    Caregivers;    Quality of life;    Osteogenesis imperfecta;   

Others  :  1207714
DOI  :  10.1186/s12955-015-0226-4

 received in 2014-11-12, accepted in 2015-02-20,  发布年份 2015

【 摘 要 】

Background

Osteogenesis imperfecta (OI) is a group of genetic disorders of collagen biosynthesis, characterized by low bone density leading to fractures. Most patients exhibit functional impairment and require the aid of a caregiver. The aim of this study is to assess the quality of life (QoL) of caregivers of patients with OI.

Methods

In this cross-sectional study, a convenience sampling strategy was used to enroll adult caregivers of children and adolescents with OI who attended a referral center in southern Brazil. The WHOQOL-BREF instrument was used to assess QoL.

Results

Twenty-four caregivers of 27 patients (10 with type I, 4 with type III, and 13 with type IV OI) were included in the study. Eighteen caregivers were the patients’ mothers, two had OI, and 22 cared for only one patient. Mean WHOQOL-BREF scores were 14.59 for the physical health domain, 13.80 for the psychological domain, 15.19 for the social relationships domain, and 12.87 for the environmental domain; the mean total QoL score was 14.16. QoL scores did not differ significantly according to patients’ OI type or number of fractures. Economic status was not correlated significantly with QoL scores.

Conclusions

QoL appears to be impaired in caregivers of patients with OI. Additional studies are required to confirm these findings and to ascertain which factors account for this phenomenon.

【 授权许可】

   
2015 Vanz et al; licensee BioMed Central.

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