The first section of this thesis aims to provide an international perspective on the characterisation of patients with axial spondyloarthritis. Through different aspects of the classification... Show moreThe first section of this thesis aims to provide an international perspective on the characterisation of patients with axial spondyloarthritis. Through different aspects of the classification criteria, we review the importance of global applicability of these criteria. As classification criteria ensure the same patients are selected for participation in clinical trials worldwide, global applicability would allow for direct comparisons between studies executed in different geographical regions. Likewise, standardised assessment and reporting of results from clinical trials allows for direct comparisons between studies investigating different treatments, or identical treatments in populations from a different ethnicity or background, which is debated in the second part of this thesis. Herein, we describe the process of the development of the core set for axial spondyloarthritis, specifically by updating the domains of the ASAS-OMERACT core set for ankylosing spondylitis. In the final part of this thesis, we discuss health-related quality of life and work and activity impairments in patients with chronic back pain suspected of axial spondyloarthritis. Show less
The Evaluation of Daily Activity Questionnaire (EDAQ) is a detailed patient-reported outcome measure of activity ability. The objective of this research was to assess the linguistic and cross... Show moreThe Evaluation of Daily Activity Questionnaire (EDAQ) is a detailed patient-reported outcome measure of activity ability. The objective of this research was to assess the linguistic and cross-cultural validity and psychometric properties of the EDAQ in rheumatoid arthritis for Dutch and German speakers. The EDAQ was translated into Dutch and German using standard methods. A total of 415 participants (Dutchn = 252; Germann = 163) completed two questionnaires about four weeks apart. The first included the EDAQ, Health Assessment Questionnaire (HAQ) and 36-item Short-Form v2 (SF-36v2) and the second, the EDAQ only. We examined construct validity using Rasch analysis for the two components (Self-Care and Mobility) of the Dutch and German EDAQ. Language invariance was also tested from the English version. We examined internal consistency, concurrent and discriminant validity and test-retest reliability in the 14 EDAQ domains. The Self-Care and Mobility components satisfied Rasch model requirements for fit, unidimensionality and invariance by language. Internal consistency for all 14 domains was mostly good to excellent (Cronbach's alpha >= 0.80). Concurrent validity was mostly strong: HAQr(s) = 0.65-0.87; SF36v2r(s) = - 0.61 to - 0.87. Test-retest reliability was excellent [ICC (2,1) = 0.77-0.97]. The EDAQ has good reliability and validity in both languages. The Dutch and German versions of the EDAQ can be used as a measure of daily activity in practice and research in the Netherlands and German- speaking countries. Show less
Boswinkel, V.; Steggerda, S.J.; Fumagalli, M.; Parodi, A.; Ramenghi, L.A.; Groenendaal, F.; ... ; Wezel-Meijler, G. van 2019
Cerebellar hemorrhage (CBH) is a frequent complication of preterm birth and may play an important and under-recognized role in neurodevelopment outcome. Association between CBH size, location, and... Show moreCerebellar hemorrhage (CBH) is a frequent complication of preterm birth and may play an important and under-recognized role in neurodevelopment outcome. Association between CBH size, location, and neurodevelopment is still unknown. The main objective of this study was to investigate neurodevelopmental outcome at 2 years of age in a large number of infants with different patterns of CBH. Of preterm infants (<= 34 weeks) with known CBH, perinatal factors, neuro-imaging findings, and follow-up at 2 years of age were retrospectively collected. MRI scans were reassessed to determine the exact size, number, and location of CBH. CBH was divided into three groups: punctate (<= 4 mm), limited (> 4 mm but < 1/3 of the cerebellar hemisphere), or massive (>= 1/3 of the cerebellar hemisphere). Associations between pattern of CBH, perinatal factors, and (composite) neurodevelopmental outcome were assessed. Data of 218 preterm infants with CBH were analyzed. Of 177 infants, the composite outcome score could be obtained. Forty-eight out of 119 infants (40%) with punctate CBH, 18 out of 35 infants (51%) with limited CBH, and 18 out of 23 infants (78%) with massive CBH had an abnormal composite outcome score. No significant differences were found for the composite outcome between punctate and limited CBH (P = 0.42). The risk of an abnormal outcome increased with increasing size of CBH. Infants with limited CBH have a more favorable outcome than infants with massive CBH. It is therefore important to distinguish between limited and massive CBH. Show less
Dit proefschrift richt zich op het monitoren van ziekte bij zowel RA als UA pati_nten en kijkt daarbij naar de waarde van de beeldvorming, het beoordelen van de ziekteactiviteit, het vast te... Show moreDit proefschrift richt zich op het monitoren van ziekte bij zowel RA als UA pati_nten en kijkt daarbij naar de waarde van de beeldvorming, het beoordelen van de ziekteactiviteit, het vast te stellen behandeldoel en de implementatie van monitoring in de dagelijkse praktijk. Naar aanleiding van dit proefschrift kunnen de volgende conclusies worden getrokken: -Systematisch literatuur onderzoek laat zien dat afwijkingen op conventionele r_ntgenfoto__s waardevol zijn voor het voorspellen van de prognose van UA pati_nten. Voor de aanvullende waarde van echografie en MRI in UA pati_nten werd weinig bewijs gevonden. -Gewrichtsschade ter plaatste van de pols, met name erosieve schade, heeft een belangrijke invloed op het dagelijks functioneren van pati_nten met reumato_de artritis. -Een versimpelde DAS zonder gegradeerde of gegroepeerde pijnscore kan goed worden gebruikt voor het in kaart brengen van ziekteactiviteit, zowel met een VAS voor algemene gezondheid als met een VAS voor ziekteactiviteit. -De mate van ziekteactiviteit gescoord door pati_nten en artsen komt niet goed overeen. Pati_nten scoren over het algemeen hoger waarbij pijn een belangrijke factor van invloed is. Artsen baseren hun score meer op de bezinking en het aantal gezwollen gewrichten. -De relatie tussen verschillende definities van remissie (inclusief de nieuwe ACR/EULAR remissie criteria) en radiologische schade of HAQ is vergelijkbaar. -Verbetering in ziekteactiviteit geeft een verbetering in kwaliteit van leven gemeten met de Physical Component Scale van de SF-36. Dit geldt ook voor pati_nten met reeds een lage ziekteactiviteit die in remissie komen. -Pati_nten zijn bereid tot het online monitoren van lichamelijk functioneren, maar doen dit in de thuissituatie weinig. Meer begeleiding en het benadrukken van het nut van regelmatige ziektemonitoring voor het uiteindelijke behandelresultaat is nodig om dit te kunnen verbeteren. Show less
Steggerda, S.J.; Bruine, F.T. de; Berg-Huysmans, A.A. van den; Rijken, M.; Leijser, L.M.; Walther, F.J.; Wezel-Meijler, G. van 2013
