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IMPROVING CARE DELIVERY TO CHILDREN WITH ORPHAN DISEASES AND THEIR PARENTS IN MOSCOW Print
Tuesday, 10 July 2018

DOI: 10.21045/2071-5021-2018-61-3-6

I.P. Vitkovskaya
Research Institute for Health Organization and Medical Management of the Healthcare Department of Moscow, Moscow

Contacts: Vitkovskaya Irina Petrovna, e-mail: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it è This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Information about author
Vitkovskaya I.P., http://orcid.org/0000-0002-0740-1558
Acknowledgments. The study had no sponsorship.
Conflct of interests. The author declares no conflict of interest.

Abstract

Significance. Care delivery to children with orphan diseases and their parents calls for improvement with due regard to regional peculiarities.

The capital’s model of care delivery to children with orphan diseases has won the Prize of the Moscow Government; however, head pediatric external experts of the Moscow Healthcare Department are focused on its continuous improvement to increase rehabilitation potential of families with children with orphan diseases, develop an effective system of continuous professional education of primary care pediatricians, coordinate activities of head pediatric external experts, and organize information space to ensure access to quality health care.

The purpose of the study was to analyze opinions of head pediatric external experts of the Moscow Healthcare Department about care improvement to children with orphan diseases and their parents.

Materials and methods. The study base: Reference center of inborn hereditary and genetic disorders, orphan and other rare diseases of the Morozov children’s clinical hospital of the Moscow Healthcare Department. The study was conducted using specially designed questionnaire that included 20 questions.

The expert review criteria included quality indicators evaluated by a five-score scale, rating of responses, and concordance method with calculation of the Kendall’s coefficient (W).

Results. The study showed the following innovative directions: development of personified rehabilitation system for children with orphan diseases; need for a new information format for training pediatricians and primary care physicians as well as educating patients and their parents; development of monitoring criteria and implementation of continuous analysis of monitoring results as an integral part of the head external experts work; input of additional information about the child and the family into the regional segment of the Federal register of patients with orphan diseases to improve quality of medical care; and development of an electronic platform for translational medicine and telemedical counselling.

Keywords: children; orphan diseases; patients’ experience; head external experts.

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