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Quality of life and costs in Parkinson's disease: a cross sectional study in Hungary.

ABSTRACT: Patient reported outcomes and costs of illness are useful to capture some of the multiple effects of a disease and its treatments. Our aim was to assess quality of life (QoL) and costs of Parkinson's disease (PD) in Hungary, and to analyze their associations.A cross-sectional questionnaire survey was conducted in one neurology university clinic. Clinical characteristics, PD related resource utilizations and productivity loss in the past 12 months were recorded; the Hoehn&Yahr (HY) scale, PDQ-39 and EQ-5D questionnaires were applied. Cost calculation was performed from the societal perspective.110 patients (34.5% female) were involved with mean age of 63.3 (SD=11.3) and disease duration of 8.2 (SD=5.8) years. PDQ-39 summary score was 48.1 (SD=13.4). The average EQ-5D score was 0.59 (SD=0.28), and was significantly lower than the population norm in age-groups 45-74. The correlation was significant between EQ-5D and PDQ-39 (-0.47, p=0.000), the HY scale and EQ-5D (-0.3416, p=0.0008) and PDQ-39 (0.3419, p=0.0006) scores. The total mean cost was €6030.2 (SD=6163.0)/patient/year (direct medical 35.7%, direct non-medical 29.4%, indirect cost 34.9%). A one year increase in disease duration and 0.1 decrease of the EQ-5D utility score increase the yearly costs by 8 to 10%, and 7.8%, respectively. The effect of the PDQ-39 score on total cost was not significant.Disease severity and public health importance of PD are clearly demonstrated by the magnitude of QoL loss. PD-related costs are substantial, but are much lower in Hungary than in Western European countries. Disease duration and EQ-5D score are significant proxy of costs.

SUBMITTER: Tamas G

PROVIDER: S-EPMC4167855 | biostudies-other | 2014

REPOSITORIES: biostudies-other

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Project description:To assess the quality of life (QoL) of caregivers of children with sickle cell disease (SCD) and to determine the risk factors associated with poor QoL.A cross sectional study was conducted between 01 and 30 June 2015, in a tertiary care center in western Saudi Arabia to assess various dimensions of QoL by using TNO-AZL Questionnaire for Adult's Health-related Quality of Life (TAAQOL). A total 164 adult caregivers (aged 16 years or more) of children with SCD, who were regularly visiting the department were enrolled (refusal rate?=?61.6%). The questionnaire scores were transformed into 0-100 scale; with higher scores indicating less difficulty and better QoL Demographic, socioeconomic data and a satisfaction questionnaire regarding participants' lifestyle were collected and analyzed as risk factors for impaired QoL, by comparing different QoL dimensions' scores using independent t-test, Oneway ANOVA, or linear regression, as appropriate.Sixty-three caregivers were included; 79.4% were mothers, age range 21-71 years, 64.5% were from low social class receiving insufficient support and financial needs were unmet for considerable number of families. Analysis of QoL using TAAQOL showed that emotions (median [75th centile]?=?44.44 [66.67] for negative and 61.11 [72.22] for positive emotions), sleep quality (66.67 [91.67]) and sexual life (50.00 [83.33]) were the most affected dimensions. Professional achievement (91.67 [100]), cognitive skills (83.33 [100]), and social contact (100 [100]) were relatively preserved. Negative emotions were more marked in mothers and mostly predicted by satisfaction with social relations notably with partner (B?=?3.14, p?=?0.016), friends (B?=?2.51, p?=?0.015) and relatives (B?=?2.69, p?=?0.016). Positive emotions were predicted by the levels of satisfaction of the caregiver with his/her health (B?=?2.56, p?=?0.001), job achievement (B?=?4.54, p?=?0.001), living conditions (B?=?2.60, p?=?0.034) and the condition of the diseased child (B?=?2.55, p?=?0.011). A strong correlation was found between sleep quality and cognitive skills.There are notable financial and emotional burdens on the caregivers of children with SCD affecting various aspects of their QoL, which are likely to be impacted by the individual levels of social and professional achievement. Physicians and health authorities should give particular attention to the QoL of caregivers and families of children with SCD, to help them cope up with the disease and overcome its related psychological and financial impacts.

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Quality of life and costs in Parkinson's disease: a cross sectional study in Hungary.

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