13 research outputs found
The Greek version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient-reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Greek language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographics, clinical data, and the JAMAR from 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the three Likert assumptions, floor/ceiling effects, internal consistency, Cronbach\u2019s alpha, interscale correlations, test\u2013retest reliability, and construct validity (convergent and discriminant validity). The Greek JAMAR was fully cross-culturally adapted with two forward and three backward translations. A total of 272 JIA patients (5.9% systemic, 57.7% oligoarticular, 21.3% RF negative poly-arthritis, 15.1% other categories), and 100 healthy children were enrolled in all centres. The JAMAR components discriminated well-healthy subjects from JIA patients; notably, there was no significant difference between healthy subjects and their affected peers in psychosocial quality of life and school-related items. All JAMAR components revealed good psychometric performances. In conclusion, the Greek version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and in clinical research
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: An international collaboration
Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases. Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY) to Simple Measure of Impact of Illness in Youngsters (SMILY-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Conclusion: SMILY-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY-Illness with its available translations may be used as useful adjuncts to clinical practice and research
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n= 15) and 17 parents participated. the mean age was 12 +/- 4 years, with median disease duration of 21 months (1-172 months). We translated SMILY (c)-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.Conclusion: SMILY (c)-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research.Rutgers State Univ, Robert Wood Johnson Med Sch, New Brunswick, NJ 08903 USARutgers State Univ, Child Hlth Inst New Jersey, New Brunswick, NJ 08901 USAHosp Special Surg, New York, NY 10021 USAUniv Michigan, Ann Arbor, MI 48109 USARed Cross War Mem Childrens Hosp, Cape Town, South AfricaAin Shams Univ, Pediat Allergy Immunol & Rheumatol Unit, Cairo, EgyptAin Shams Univ, Pediat Rheumatol Pediat Allergy Immunol & Rheum, Cairo, EgyptKing Faisal Specialist Hosp & Res Ctr, Riyadh 11211, Saudi ArabiaCharles Univ Prague, Prague, Czech RepublicGen Univ Hosp, Prague, Czech RepublicUniv Hosp Motol, Dept Pediat, Prague, Czech RepublicAarhus Univ, Hosp Skejby, Aarhus, DenmarkRigshosp, Juliane Marie Ctr, DK-2100 Copenhagen, DenmarkUniv Med Ctr, Dept Pediat Immunol, Utrecht, NetherlandsWilhelmina Childrens Hosp, Utrecht, NetherlandsGreat Ormond St Hosp Sick Children, Children NHS Fdn Trust, Renal Unit, London, EnglandLyon Univ, Hosp Civils Lyon, Rheumatol & Dermatol Dept, Lyon, FranceMed Univ Innsbruck, A-6020 Innsbruck, AustriaPrim Univ Doz, Bregenz, AustriaHamburg Ctr Pediat & Adolescence Rheumatol, Hamburg, GermanyAsklepios Clin Sankt, Augustin, GermanyUniv Zurich, Childrens Hosp, Zurich, SwitzerlandAristotle Univ Thessaloniki, Pediat Immunol & Rheumatol Referral Ctr, GR-54006 Thessaloniki, GreeceIsrael Meir Hosp, Kefar Sava, IsraelSanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, IndiaSemmelweis Univ, H-1085 Budapest, HungaryAnna Meyer Hosp, Florence, ItalyUniv Siena, Res Ctr System Autoimmune & Autoinflammatory Dis, I-53100 Siena, ItalyUniv Florence, Florence, ItalyOsped Pediat Bambino Gesu, IRCCS, Pediat Rheumatol Unit, Rome, ItalyUniv Genoa Pediat II Reumatol, Ist G Gaslini EULAR, Ctr Excellence Rheumatol, Genoa, ItalyUniv Cattolica Sacro Cuore, Inst Pediat, Rome, ItalyUniv Padua, Dept Pediat, Pediat Rheumatol Unit, Padua, ItalyYokohama City Univ, Sch Med, Yokohama, Kanagawa 232, JapanUniv Estadual Paulista, UNESP, Botucatu, SP, BrazilUniversidade Federal de São Paulo, Dept Pediat, São Paulo, BrazilUniv Estadual Campinas, Dept Med, Campinas, SP, BrazilUniv Fed Rio de Janeiro, Dept Pediat, Rio de Janeiro, BrazilUniv Estado do, Adolescent Hlth Care Unit, Div Pediat Rheumatol, Rio de Janeiro, BrazilUniv São Paulo, Fac Med, Childrens Inst, Dept Pediat,Pediat Rheumatol Unit, São Paulo, BrazilChildrens Inst, Pediat Rheumatol Unit, São Paulo, BrazilClin Pediat I, Cluj Napoca, RomaniaInst Rheumatol, Belgrade, SerbiaUniv Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, SloveniaHead Rheumatol Hosp Pedro Elizalde, Buenos Aires, DF, ArgentinaHosp Gen Mexico City, Mexico City, DF, MexicoHosp Infantil Mexico Fed Gomez, Mexico City, DF, MexicoHosp San Juan Dios, Barcelona, SpainHosp Univ Valle Hebron, Barcelona, SpainMt Sinai Med Ctr, New York, NY 10029 USAMt Sinai Med Ctr, Miami Beach, FL 33140 USAComplejo Hosp Univ Ruiz & Paez, Bolivar, VenezuelaHacettepe Univ, Dept Pediat, Ankara, TurkeyIstanbul Univ, Cerrahpasa Med Sch, Istanbul, TurkeyFMF Arthrit Vasculitis & Orphan Dis Res Ctr, Inst Hlth Sci, Ankara, TurkeyUniv Calgary, Dept Pediat, Alberta Childrens Hosp, Res Inst, Calgary, AB T2N 1N4, CanadaUniversidade Federal de São Paulo, Dept Pediat, São Paulo, BrazilWeb of Scienc
The effect of anti-TNF treatment on the immunogenicity and safety of the 7-valent conjugate pneumococcal vaccine in children with juvenile idiopathic arthritis
Our aim was to study the effect of anti-TNF treatment on immunogenicity
and safety of the 7-valent conjugate pneumococcal vaccine in children
with juvenile idiopathic arthritis. Thirty-one children (mean age:12.9
+/- 4.6 years) treated with anti-TNFs plus Disease Modifying
Anti-Rheumatic Drugs (DMARDs) and 32 age-matched children treated only
with DMARDs were vaccinated with two doses of PCV7. After the first
vaccine dose geometric mean titers (GMTs) were significantly increased
for all vaccine serotypes (p < 0.0001) in both groups and were found to
be protective (>0.35 mu g/ml) in 87-100% of all children, depending on
the serotype. Children receiving anti-TNFs achieved a significantly
lower GMTs against serotypes 4, 14 and 23F (p < 0.05). A >= 4-fold
increase of the baseline titers to >= 5 vaccine serotypes was observed
in 50% and 75% of the anti-TNF and control patients, respectively (p =
0.0697). No patient developed vaccine-associated serious adverse events
or disease flares. (C) 2010 Elsevier Ltd. All rights reserved
The Greek version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a
new parent/patient-reported outcome measure that enables a thorough
assessment of the disease status in children with juvenile idiopathic
arthritis (JIA). We report the results of the cross-cultural adaptation
and validation of the parent and patient versions of the JAMAR in the
Greek language. The reading comprehension of the questionnaire was
tested in 10 JIA parents and patients. Each participating centre was
asked to collect demographics, clinical data, and the JAMAR from 100
consecutive JIA patients or all consecutive patients seen in a 6-month
period and to administer the JAMAR to 100 healthy children and their
parents. The statistical validation phase explored descriptive
statistics and the psychometric issues of the JAMAR: the three Likert
assumptions, floor/ceiling effects, internal consistency, Cronbach’s
alpha, interscale correlations, test-retest reliability, and construct
validity (convergent and discriminant validity). The Greek JAMAR was
fully cross-culturally adapted with two forward and three backward
translations. A total of 272 JIA patients (5.9% systemic, 57.7%
oligoarticular, 21.3% RF negative poly-arthritis, 15.1% other
categories), and 100 healthy children were enrolled in all centres. The
JAMAR components discriminated well-healthy subjects from JIA patients;
notably, there was no significant difference between healthy subjects
and their affected peers in psychosocial quality of life and
school-related items. All JAMAR components revealed good psychometric
performances. In conclusion, the Greek version of the JAMAR is a valid
tool for the assessment of children with JIA and is suitable for use
both in routine clinical practice and in clinical research
Growth and Puberty in Juvenile Dermatomyositis: A Longitudinal Cohort Study
Objective To study growth and puberty in a multinational longitudinal
prospective cohort of children with juvenile dermatomyositis (DM).
Methods Children from 31 countries who were ages DM in active phase were
studied, and analyses of height, weight, and pubertal development were
conducted in those who had follow-up visits during a 2-year period and
for whom anthropometric data was available. Results A total of 196 of
275 children (71%) were included. We found a significant reduction in
parent-adjusted height Z score over time in female patients (P < 0.0001)
and male patients (P = 0.001), but with catch-up growth at the final
study visit. Median body mass index Z score peaked at 6 months (P <
0.0001) and was still significantly above baseline at the final study
visit, which was at a median of 26 months after baseline (P = 0.007),
with no difference between sexes. Female patients with a disease
duration >= 12 months after onset had significantly lower
parent-adjusted height Z score (P = 0.002) and no 2-year catch-up
growth. At the final study visit, growth failure was seen in 20 of 97
female patients (21%) and in 11 of 73 male patients (15%). Height
deflection ( increment height Z score less than -0.25/year) was observed
in 29 of 116 female patients (25%) and 25 of 80 male patients (31.3%).
Delayed puberty was seen in 20 of 55 female patients (36.4%) and in 11
of 31 male patients (35.5%). Children in early pubertal stage at
baseline had the highest risk of growth failure. Conclusion Juvenile DM
in the active phase and/or its treatment has a significant impact on
growth and puberty in affected children. Children with recent onset of
puberty or previous growth failure have the highest risk of delayed
pubertal development and further growth retardation
Mobile device usage in university and workplace learning settings
This research proposal reports a study investigating the usage of e-Readers and tablets in higher education. A longitudinal study was conducted at a Cooperate State University in Germany over a one-year period comparing both devices. The findings indicate a higher reported benefit for tablets. Especially the ability to access a multitude of information sources is rated as an important feature of the tablet
EULAR/PRINTO/PRES criteria for Henoch-Schonlein purpura, childhood polyarteritis nodosa, childhood Wegener granulomatosis and childhood Takayasu arteritis: Ankara 2008. Part I: Overall methodology and clinical characterisation
Objectives To report methodology and overall clinical, laboratory and radiographic characteristics for Henoch-Schonlein purpura (HSP), childhood polyarteritis nodosa (c-PAN), c-Wegener granulomatosis (c-WG) and c-Takayasu arteritis (c-TA) classification criteria
Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration
Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases