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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.
References
-
Al'bikov I.R. Pravovye aspekty meditsinskogo obsledovaniya lits,
vstupayushchikh v brak [Legal aspects of health examination of persons
getting married]. Semeynoe i zhilishchnoe pravo 2013; (5):10-12. (In Russian).
-
Al'bitskiy V.Yu., Antonova E.V., Baranov A.A., Bondar' V.I., Volkov
I.M., Zelinskaya D.I., et al. Metodicheskie rekomendatsii po izucheniyu
zabolevaemosti detskogo naseleniya [Methodical recommendations for
studying children’s morbidity]. Moscow . 2009. (In Russian).
-
Apraksina K. Dlya rossiyskikh orfannykh patsientov otkryvaetsya "doroga
zhizni" [“The way of life” opens for Russian orphan patients]. Remedium 2010; (8): 49-51. (In Russian).
-
Belousov Yu.B., Bolezni –siroty i sirotskie lekarstva [Diseases – orphans and orphan medications]. Remedium 2007; (9): 8-10. (In Russian).
-
Burdo E.P. Meditsinskoe obsledovanie lits, vstupayushchikh v brak [Health examination of persons getting married]. Mariyskiy yuridicheskiy vestnik 2015; 1 (2): 46-49. (In Russian).
-
Vitkovskaya I.P., Pechatnikova N.L., Utkin S.A., Petryaykina E.E.,
Koltunov I.E., Melik-Guseynov D.V. Registry redkikh (orfannykh)
zabolevaniy. Algoritm predostavleniya svedeniy o patsiente s redkim
(orfannym) zabolevaniem v regional'nyy segment federal'nogo registra.
Metodicheskie rekomendatsii ¹ 58 [Registers of (rare) orphan diseases.
The algorithm to present information about patient with a (rare) orphan
disease to the Regional segment of the Federal register. Guidelines ¹
58]. Moscow: Departament zdravookhraneniya goroda Moskvy; 2017. 52 p.
(In Russian).
-
Vitkovskaya I.P. Organizatsiya pomoshchi detyam s orfannymi
zabolevaniyami v Moskve: problemnye zony i vozmozhnosti po dannym oprosa
roditeley [Organization of care to children with orphan diseases in
Moscow: the problems and opportunities according to the parents’ survey
data]. Sotsial'nye aspekty zdorov'ya naseleniya [serial online] 2017 [cited 2018 May 16]; 58 (6). Available from: http://vestnik.mednet.ru/content/view/934/30/lang,ru/. (In Russian).
-
Grechko A.V., Abdurashidova P.B., Dzugaev A.K. Sovershenstvovanie
spetsializirovannoy meditsinskoy pomoshchi detskomu naseleniyu
[Improvement of specialized medical care for children]. Mediko-sotsial'naya ekspertiza i reabilitatsiya detey s ogranichennymi vozmozhnostyami 2009; (4): 21-22.
-
Prava detey pri okazanii pervichnoy mediko-sanitarnoy pomoshchi [The
rights of children in providing primary health care]. WHO Regional
office for Europe. Copenhagen. 2015. 12 p. (In Russian).
-
Kakaya svyaz' sushchestvuet mezhdu udovletvorennost'yu sistemoy
mediko-sanitarnoy pomoshchi i lichnym opytom patsienta? [What is a
relationship between patient’s satisfaction with health care system and
patient’s personal experience?]. WHO Regional office for Europe. 2009;
87 (4): 245-324. (In Russian).
-
Koltunov I.E., Petryaykina E.E., Potekhin O.E., Pechatnikova N.L.,
Vitkovskaya I.P. Selektivnyy skrining na nasledstvennye bolezni obmena
veshchestv. Metodicheskie rekomendatsii ¹16 [Selective screening for
hereditary metabolic diseases. Guideline ¹16]. Moscow: Departament
zdravookhraneniya goroda Moskvy; 2017. 24p. (In Russian).
-
Kontseptsiya razvitiya ranney pomoshchi na period do 2020 goda [The
concept for development of early health care for the period up to 2020].
Rasporyazhenie Pravitel'stva RF ot 31.08.2016 g. ¹1839-r [Online]
[cited 2018 Apr 27]. Available from: http://static.government.ru/media/files/7NZ6EKa6SOcLcCCQbyMRXHsdcTmR9lki.pdf. (In Russian).
-
Kraevoy S.A. Meditsina perekhodit na printsip chetyrekh "P" [Medicine goes to the principle of “four P”]. RBK: [Online] [cited 2018 May 16]. Available from: https://www.rbc.ru/rbcfreenews/5a5e2b589a7947747cca4254. (In Russian).
-
Kutsev S.I. Put' patsienta s redkim diagnozom: normativnye dokumenty i
organizatsiya lechebno-diagnosticheskogo protsessa pri orfannom
zabolevanii v Rossiyskoy Federatsii [The way of a patient with a rare
diagnosis: regulatory documents and organization of diagnosis and
treatment care for orphan diseases in the Russian Federation]. Nervno-myshechnye bolezni 2017;7 (4): 61-63. (In Russian).
-
Lomakina O.L. Obshcherossiyskiy registr patsientov s sistemnym
yuvenil'nym idiopaticheskim artritom - effektivnyy instrument
monitoringa zabolevaniya i meditsinskoy pomoshchi [All-Russian register
of patients with systematic juvenile idiopathic arthritis is an
efficient tool for monitoring diseases and medical care]. Cand. Med. Sci
[thesis]. Ìoscow 2017. 24 p. (In Russian).
-
Maksimovich L.B. Pravovye aspekty meditsinskogo obsledovaniya lits,
vstupayushchikh v brak. Obyazany li grazhdane, vstupayushchie v brak,
prokhodit' meditsinskoe obsledovanie? Mezhdunarodnyy opyt i rossiyskie
realii [Legal aspects of health examination for persons getting married.
Should they undergo health examination? International experience and
Russian realities]. Pravovye voprosy v zdravookhranenii 2012; (7): 66-73. (In Russian).
-
Modestov A.A., Kosova S.A., Aminova Z.M., Shevchenko V.V. Formirovanie
sotsial'no-bytovykh navykov u detey-invalidov, prozhivayushchikh v
sem'yakh. Metodicheskie rekomendatsii [Formation of social and domestic
skills in disabled children living in families. Guidelines]. Abakan:
Hak. kn. izd-vo; 2007. 52 p. (In Russian).
-
Modestov A.A., Kosova S.A., Nevolin Yu.S., Farrakhov A.Z., Fedotkina
S.A. Tsentry zdorov'ya dlya detey: problemy i perspektivy razvitiya
[Health centers for children: problems and development prospects]. Sotsial'nye aspekty zdorov'ya naseleniya
[serial online] 2013 [cited 2018 May 16]; 31 (3). Available from:
http://vestnik.mednet.ru/content/view/482/30/lang,ru/. (In Russian).
-
Orlov A.V., Simonova O.I., Roslavtseva E.A., Shadrin D.I. Mukovistsidoz
(klinicheskaya kartina, diagnostika, lechenie, reabilitatsiya,
dispanserizatsiya) [Cystic fibrosis (clinical picture, diagnosis,
treatment, rehabilitation, health examination)]. St. Petersburg:
Izdatel'stvo SZGMU im. I. I. Mechnikova; 2014. 223 p. (In Russian).
-
Ob utverzhdenii Pravil vedeniya Federal'nogo registra lits, bol'nykh
gemofiliey, mukovistsidozom, gipofizarnym nanizmom, bolezn'yu Goshe,
zlokachestvennymi novoobrazovaniyami limfoidnoy, krovetvornoy i
rodstvennykh im tkaney, rasseyannym sklerozom, lits posle
transplantatsii organov i (ili) tkaney [On the approval of the Rules of
the Federal register for the persons with hemophilia, cystic fibrosis,
pituitary dwarfism, Gaucher disease, malignant neoplasm of lymphoid,
hematopoietic and related tissues, multiple sclerosis, and person after
organ and (or) tissue transplantation]. Postanovlenie Pravitel'stva
Rossiyskoy Federatsii ot 26 aprelya 2012 g. ¹404. [cited 2018 Apr 26].
Available from: http://base.garant.ru/70168890/. (In Russian).
-
O formakh dokumentov dlya vedeniya regional'nogo segmenta Federal'nogo
registra lits, stradayushchikh zhizneugrozhayushchimi i khronicheskimi
progressiruyushchimi redkimi (orfannymi) zabolevaniyami, privodyashchimi
k sokrashcheniyu prodolzhitel'nosti zhizni grazhdan ili ikh
invalidnosti, i poryadke ikh predstavleniya [On the forms of documents
to conduct the regional segment of the Federal register of the persons
suffering from life-threatening and chronic progressive rare (orphan)
diseases leading to a reduction in life expectancy and disability, and
the order of their presentation]. Prikaz MZ RF ot 19 noyabrya 2012 g.
¹950n [Online] [cited 2018 May 14]. Available from: http://base.garant.ru/70269284/ (In Russian).
-
Ob utverzhdenii poryadka organizatsii i okazaniya meditsinskoy
pomoshchi s primeneniem telemeditsinskikh tekhnologiy [On approval of
the Procedure for organization and providing health care with using
telemedicine technologies]. Prikaz Minzdrava Rossii ot 30.11.2017 N 965n [Online] [cited 2018 Apr 25]. Available from: https://minjust.consultant.ru/documents/38004 (In Russian).
-
Ob organizatsii referens-tsentra vrozhdennykh nasledstvennykh
zabolevaniy, geneticheskikh otkloneniy, orfannykh i drugikh redkikh
zabolevaniy [On the organization of a reference center for congenital
hereditary diseases, genetic abnormalities, orphan and other rare
diseases]. Prikaz Departamenta zdravookhraneniya Moskvy ot 02.06.2015 g.
¹ 461 [Online]. [cited 2018 Apr 26]. Available from: http://mosgorzdrav.ru/ru-RU/document/default/search.html?phrase=461&interval=&group_id=0. (In Russian).
-
O glavnykh vneshtatnykh spetsialistakh Departamenta zdravookhraneniya
g. Moskvy [About the main non-staff specialists of the Health Department
of Moscow]. Prikaz Departamenta zdravookhraneniya g. Moskvy ot
28.05.2014 ¹502 [Online] [cited 2018 Apr 25]. Available from: http://base.garant.ru/71404334/ . (In Russian).
-
O prisuzhdenii premii g. Moskvy 2017 goda v oblasti meditsiny [On
awarding the Moscow City Prize 2017 in the field of medicine]. Vestnik
Mera i Pravitel'stva Moskvy ¹57 (2602).- oktyabr' 2017 g. – p 5-7
[Online] [cited 2018 Apr 25]. Available from: http://vestnik.mos.ru/files/pdf/2017/10oct/57.pdf. (In Russian).
-
Skvortsova V.I. K printsipam translyatsionnoy meditsiny [The principles of translational medicine]. Meditsina tselevye proekty [serial online] 2015] [cited 2018 May 16]; (21). Available from: http://www.sovstrat.ru/journals/medicina-celevye-proekty/articles/st-med21-1-.html . (In Russian).
-
Suchkov S.V. Preventivno-prediktivnaya i personifitsirovannaya
meditsina –meditsina budushchego [Preventive predictive and personified
medicine is a medicine of the future]. Doklad na Vserossiyskoy nauchnoy
shkole «Translyatsionnaya meditsina: mezhdunarodnyy opyt i tendentsii
razvitiya v Rossii». [Online] [cited 2018 May 16]. Available from: www.rudn.ru/file.php?id=2349. (In Russian).
-
Ob osnovakh okhrany zdorov'ya grazhdan v Rossiyskoy Federatsii (s
izmeneniyami i dopolneniyami) [On the basis of population health
protection (amended and supplemented). Federal'nyy zakon ot 21 noyabrya
2011 g. ¹323-FZ. [Online] [cited 2018 May 16]. Available from: http://base.garant.ru/12191967/#ixzz4hQn3fgrK. (In Russian).
-
Yakh"yaeva G.T. Nauchnoe obosnovanie novykh podkhodov k diagnostike i
lecheniyu nesovershennogo osteogeneza u detey [Scientific ground for new
approaches to diagnosis and treatment of imperfect osteogenesis in
children]. Cand. Med. Sci [thesis]. Ìoscow. 2016. 24 p. (In Russian).
-
Bleich S., Murray C. Kakaya svyaz' sushchestvuet mezhdu
udovletvorennost'yu sistemoy mediko-sanitarnoy pomoshchi i lichnym
opytom patsientà? [What is the relation between patient’s satisfaction
with health care system and patient’s personal experience?]. Byulleten' VOZ 2009; 87 (4):245-324. (In Russian).
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