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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:
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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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