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

Abstract

BackgroundOsteogenesis 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.MethodsIn 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.ResultsTwenty-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.ConclusionsQoL 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.

Relationship between Caregiver’s Quality of Life and Childhood Tuberculosis in Bauchi State, Northeastern Nigeria

“…Majority of the caregivers in both groups were males (63.8% and 57.4%). This finding contrasts with similar studies that showed a majority of the caregivers of children with chronic diseases to be females [27] [28]. Furthermore, majority of the caregivers in both groups The overall QOL for respondents whose children do not have TB appears to be higher (mean 7.87 and SD 1.84) compared with respondents whose children have TB (mean 6.85 and SD 1.37).…”

“…These findings suggest that respondents whose children have TB have impaired QOL compared with those whose children do not have TB. This is consistent with the findings of several studies that measured the QOL of adult caregivers whose children suffered from chronic diseases such as osteogenesis imperfecta [27], sickle cell disease [31], cancer [32] [33], disabilities, Down's syndrome [34], speech and language disorders [35], COPD [28], and schizophrenia [36]. All these studies revealed that the caregivers of the diseased children had impaired QOL compared with control populations.…”

Bisphosphonate therapy and osteogenesis imperfecta: The lived experience of children and their mothers

“…This issue contributed to stress and delay when seeking care for fractures. Caregivers (of children diagnosed with OI) QOL scores were lowest in the domains related to accessibility of social support and physical security for their children diagnosed with OI and family (Vanz et al., ). There is a need for a more family‐centered approach for developing resources for children diagnosed with OI and their families (Dogba et al., ).…”

“…In contrast Vanz et al. () identified lower QOL scores for adolescents with OI and their parents in the psychological and environmental (financial resources, safety, opportunities to participate in recreation) domains.…”

“…More recently, there has been an increased interest in capturing the QOL outcomes for children with OI and their families. QOL assessments completed with parents of children with OI describe physical and financial burdens, in addition to social and psychological stressors (Dogba, Rauch, Tre, Glorieux, & Bedos, 2014;Vanz, Félix, da Rocha, & Schwartz, 2015). Although physical QOL scores were lower in children and adults with OI; mental and psychosocial QOL scores were the same or better as compared with a well-population (Dahan-Oliel et al, 2015).…”