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Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

ABSTRACT: INTRODUCTION:Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and their parents. METHOD:Following forward and backward translation, Spanish-speaking child-parent dyads linguistically validated the translated instruments. Disease-specific and generic QOL perception of 28 child-parent dyads who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were analyzed by descriptive statistics, Mann-Whitney U test, absolute score differences, and minimal clinically important differences (MCID). RESULTS:The translated questionnaire required no further language changes. QOL scores were higher for Latino children and parents compared with non-Latinos, with score differences exceeding MCIDs for total scores and the majority of subscale scores. CONCLUSION:Spanish language PedsQL SCD instruments allow measurement of QOL in Spanish-speaking Latino children with SCD and their parents. Score differences for Latinos mostly exceeded MCIDs, suggesting that these differences are clinically meaningful. Confirmation of these findings is warranted.

SUBMITTER: Osborne JC

PROVIDER: S-EPMC7483779 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

Osborne Jennel C JC Green Nancy S NS Smaldone Arlene M AM

Hispanic health care international : the official journal of the National Association of Hispanic Nurses 20200303 4

<h4>Introduction</h4>Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and the ...[more]

PMID: 32124643

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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.

Dataset Information

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

Publications

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

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