Acikel, C

Bilginer, Y

Demirkaya, E

Fidanci, B

Frenkel, J

Gottorno, M

Karaman, D

Kone-Pau, I

Konukbay, D

Ozen, Seza

Yildiz, D

Pediatric Rheumatology

PubMed

Hacettepe University Institutional Repository

Pres-Final-2210: Qualitative Aspects Of Autoinflammatory Diseases

D Konukbay

D Yildiz

C Acikel

D Karaman

B Fidanci

Y Bilginer

I Kone-Pau

J Frenkel

M Gottorno

S Ozen

E Demirkaya

Crossref

PReS-FINAL-2210: Qualitative aspects of autoinflammatory diseases

Springer - Publisher Connector

POSTER PRESENTATION Open Access
PReS-FINAL-2210: Qualitative aspects
of autoinflammatory diseases
D Konukbay1*, D Yildiz1, C Acikel2, D Karaman3, B Fidanci1, Y Bilginer4, I Kone-Pau5, J Frenkel6, M Gottorno7,
S Ozen4, E Demirkaya8
From 20th Pediatric Rheumatology European Society (PReS) Congress
Ljubljana, Slovenia. 25-29 September 2013
Introduction
In pediatric rheumatology, the lack of scales showing activ-
ities of illness in the patients groups, the absence of bio-
markers for the severity of damage led the scientific world
to develop a scale where the patient can make an self-
assessment with quantitative results. So, a necessity has
been occurred to develop a multidimensional scale which
is understandable, applicable and comprehensive in the
evaluation of children with auto-inflammatory diseases.
Objectives
The aim of this study is to develop a multidimensional
assessment instrument named “Juvenile Autoinflammatory
Disease Multidimensional Assessment Report” (JAIMAR)
to measure all the domains of the autoinflammatory dis-
eases. In this study the data of “Qualitative Interviews”,
one of the steps of item generation in JAIMAR, will be
presented.
Methods
19 mothers who have children with autoinflammatory dis-
ease (8 FMF, 5 Behcet, 4 PFAPA, 1 HIDS, 1 TRAPS) and
their children greater than 7 years old were enrolled in
this study. Data were collected using both a demographic
data form and a semi-structured interview form. The
study was performed on individual patient face-to face
interview. Data were collected by using both a demo-
graphic data form and a semi-structured interview form.
Data analysis by grounded theory and N Vivo 10 software.
Results
Unknowing the time of attack, lifelong illness, difficul-
ties in diagnosis and exposure to the other parts of the
body were described as the worst parts of the illness.
In addition to physical factors such as cold and fatigue,
psychological factors such as overexcitement, worry
and happiness were stated to be in the triggering fac-
tors of the attacks. Although decrease in attacks after
treatments were stated, lifelong drug addiction and its
side effects were told to be the most worrying aspects.
Problems at school (absenteeism, loss of performance,
fear of having attack at school and bad peer relations)
were explained as the biggest difficulties affecting the
quality of life. Problems with friends, precocity, and
extreme expressions such as depression/wanting to die
due to back pain were to be the in the emotional
difficulties.
Conclusion
These results provide an evidence based data for the
assessment of children with autoinflammatory disease by
several domains including physical, emotional and social
aspects as well as treatment protocols. With this regard
there is a need to develop a multidimensional instrument
to measure important aspects of the illness gained from
these results.
Disclosure of interest
None declared.
Authors’ details
1School of Nursing, Gulhane Medical Military Academy, Ankara, Turkey.
2Department of Biostatistics, Gulhane Medical Military Academy, Ankara,
Turkey. 3Department of Child and Adolescent Psychiatry, Gulhane Medical
Military Academy, Istanbul, Turkey. 4Paediatric Nephrology and
Rheumatology Unit, Hacettepe University, Ankara, Turkey. 5Pediatric
Rheumatology Unit, Kremlin, Bicetre, France. 6Pediatric Rheumatology Unit,
University of Amsterdam, Utrecht, TheNetherlands. 7Rheumatology Unit,
Instituto Giannina Gaslini, Genoa, Italy. 8Pediatric Rheumatology Unit,
Gulhane Medical Military Academy, Ankara, Turkey.1School of Nursing, Gulhane Medical Military Academy, Ankara, Turkey
Full list of author information is available at the end of the article
Konukbay et al. Pediatric Rheumatology 2013, 11(Suppl 2):P200
http://www.ped-rheum.com/content/11/S2/P200
© 2013 Konukbay et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Published: 5 December 2013
doi:10.1186/1546-0096-11-S2-P200
Cite this article as: Konukbay et al.: PReS-FINAL-2210: Qualitative aspects
of autoinflammatory diseases. Pediatric Rheumatology 2013 11(Suppl 2):
P200.
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Konukbay et al. Pediatric Rheumatology 2013, 11(Suppl 2):P200
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