Possibilities of the Health Utilities Index questionnaire in assessing the quality of life of children with disabilities

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Abstract

Background. Currently, in the Russian Federation, the criteria for establishing disability do not take into account the assessment of the quality of life, while in developed countries this indicator is a mandatory component of examination programs and evaluation of the effectiveness of treatment and rehabilitation. In Russian pediatrics, research on the development of indicators of the quality of life in children with chronic disabling diseases has begun, this work is a continuation of this direction.

Aim. To assess the quality of life of disabled children with various somatic diseases using all the possibilities of the Health Utilities Index questionnaire.

Material and methods. A survey of 213 patients aged 5 to 18 years with chronic diseases with the status of a “disabled child” and their legal representatives was conducted using the Russian version of the international general questionnaire Health Utilities Index. Statistical analysis was performed using the SPSS software package version 26.0. The Kruskal–Wallis test and Dunn's posterior test were used.

Results. During the study, multi-attribute utilitarian indices were developed for each group of children, which ranged from 0.67±0.3 (95% confidence interval 0.55–0.78) in patients with rheumatological diseases to 0.85±0.21 (95% confidence interval 0.79–0.91) in children with heart disease and statistically significantly (p <0.001) were lower than in healthy children (0.9±0.17; 95% confidence interval 0.87–0.92). The features of one-attribute utilitarian indices depending on the class of the disease have been established. An analysis of the level and degree of functioning disorders showed that the most common and frequent for children with disabilities in the studied groups were emotional disorders; problems associated with the presence of pain; disability caused by a sense of cognitive deficit. For the first time, to determine the “categories” of the severity of violations an approach according to a multi-attribute utilitarian index was used.

Conclusion. The quality of life in children with disabilities, reduced compared to healthy peers, has nosological features; the most pronounced decrease in the quality of life was noted in children with skin diseases and rheumatological diseases.

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About the authors

Irina V. Vinyarskaya

National Medical Research Center for Children's Health

Email: vinjarskaya@nczd.ru
ORCID iD: 0000-0002-1257-2212

M.D., D. Sci. (Med.), Prof., Head, Laboratory of Social Pediatrics and Quality of Life

Russian Federation, Moscow, Russia

Rimma N. Terletskaya

National Medical Research Center for Children's Health

Email: rterletskaya@nczd.ru
ORCID iD: 0000-0001-6313-3810

M.D., D. Sci. (Med.), Prof., Chief Researcher, Laboratory of Social Pediatrics and Quality of Life

Russian Federation, Moscow, Russia

Vladislav V. Chernikov

National Medical Research Center for Children's Health

Email: chernikov@nczd.ru
ORCID iD: 0000-0002-8750-9285

M.D., Cand. Sci. (Med.), Head, Methodological accreditation and simulation center

Russian Federation, Moscow, Russia

Elena V Antonova

National Medical Research Center for Children's Health

Author for correspondence.
Email: antonova@nczd.ru
ORCID iD: 0000-0002-1660-3346

M.D., D. Sci. (Med.), Deputy director for scientific work

Russian Federation, Moscow, Russia

Andrey P. Fisenko

National Medical Research Center for Children's Health

Email: director@nczd.ru
ORCID iD: 0000-0001-8586-7946

M.D., D. Sci. (Med.), Prof., Director

Russian Federation, Moscow, Russia

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Supplementary files

Supplementary Files
Action
1. Рис. 1. Нарушения функционирования по шкале «Эмоции» в группах (%); ЖКТ — желудочно-кишечный тракт; *p <0,001; **p <0,05

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2. Рис. 2. Нарушения функционирования по шкале «Боль» в группах (%); ЖКТ — желудочно-кишечный тракт; *p <0,001; **p <0,05

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3. Рис. 3. Нарушения функционирования по шкале «Когнитивные способности» в группах (%); ЖКТ — желудочно-кишечный тракт; *p <0,001; **p <0,05

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