Health utility assessment using EQ-5D among caregivers of children with Autism

Abstract

A subsection of the MSMQ was administered to MS patients currently not on DMT. They were asked questions about MS, using the health beliefs model as well as items regarding their perceptions of barriers to DMT initiation. All items were rated on a 1 to 5 scale, with 1 being "strongly disagree" and 5 being "strongly agree". Patients who answered "agree" or "strongly agree" were combined for chi-square analysis; t-tests were used to compare mean scores. RESULTS: Ninety two MS patients reported being non-DMT users. The mean age was 58.6 years and 78.3% were female. Only 3.3% of non-DMT users agreed or strongly agreed that their MS would improve without treatment. The highest agreed upon perceptions of barriers to DMT use dealt with possible side effects (58.2%) and potential high cost (51.9%). Splitting the non-DMT users into those who never initiated DMT and those who used to take DMT revealed significant differences in the impression that physicians lack advocating DMT use (44.7% vs. 17.1%, respectively, p<0.01) and dislike for using needles (24.3% vs. 46.3%, respectively, p=0.043). CONCLUSIONS: MS patients who are not currently on DMT may not seek or re-seek treatment for various reasons. It appears certain perceptions regarding MS and DMT influence behavior in potential DMT use.

Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe

“…There have also been no studies on the burden borne by caregivers of FXS patients. However, our findings are consistent with the mean utility score of 0.81 found in female caregivers of children with autism [51]. As with HRQOL, our study is the first to report the burden for caregivers of FXS patients through the Zarit Burden Interview, and we found the score to be significantly higher than any Zarit burden measure reported for other diseases with relatively comparable functional impairment in the three countries for which we had data.…”

“…The EQ-5D is a simple generic instrument developed by a multidisciplinary group of researchers [20], which has been validated in many countries in Europe and is commonly used in economic evaluations and health technology assessments [21]. Previous studies carried out on developmental disorders have used this tool for both patients [22] and caregivers [23]. The questionnaire is divided into five items (mobility, self-care, daily activities, pain and discomfort, anxiety and depression) and it produces utility scores developed from general population-based valuation studies, reflecting societal preferences.…”

Fragile X syndrome: economic burden and health‐related quality of life of patients and caregivers in France

“…At the same time, a recent study of HRQOL in caregivers of children with autism found the mean utility score of female caregivers (the vast majority of caregivers in our study) to be 0.81 (Khanna et al . ), as compared with 0.72 in caregivers of children with FXS in our sample. This may indicate that HRQOL in caregivers of child FXS patients is not only lower than in the general population but is also inferior to that in a peer group of caregivers of a related ID disorder.…”

“…), and studies focusing on developmental disorders have used it in studies of patients (van Steensel et al , Kulpeng et al ) and caregivers (Khanna et al . ). For FXS patients, the questionnaire generally must be completed by the caregiver.…”

“…Health-related quality of life of patients and caregivers was assessed through the five-level EuroQol-5 dimension (EQ-5D-5L) self-assessment health questionnaire (Herdman et al 2011). The EQ-5D-5L has been validated in French (Luo et al 2013), and studies focusing on developmental disorders have used it in studies of patients (van Steensel et al 2012, Kulpeng et al 2013) and caregivers (Khanna et al 2013). For FXS patients, the questionnaire generally must be completed by the caregiver.…”