Citation for published version (APA): Marlot Schuurman,. N. V. (2011). Het meten van de kwaliteit van leven bij kinderen met JIA. Groningen: s.n.
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1 University of Groningen Het meten van de kwaliteit van leven bij kinderen met JIA Marlot Schuurman, [No Value] IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below. Document Version Publisher's PDF, also known as Version of record Publication date: 2011 Link to publication in University of Groningen/UMCG research database Citation for published version (APA): Marlot Schuurman,. N. V. (2011). Het meten van de kwaliteit van leven bij kinderen met JIA. Groningen: s.n. Copyright Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons). Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Downloaded from the University of Groningen/UMCG research database (Pure): For technical reasons the number of authors shown on this cover page is limited to 10 maximum. Download date:
2 Het meten van de kwaliteit van leven bij kinderen met JIA Measuring quality of life in children with JIA Masterthese Klinische Psychologie Onderzoeksverslag Marlot Schuurman mei 2011 Afdeling Psychologie Rijksuniversiteit Groningen Supervisoren: Dr. W. Armbrust en Dr. J. Bouma Tweede beoordelaar: Prof. Dr. R. Sanderman
3 Colofon Vraagnummer: GV30/2009/C Titel: Auteur: Begeleider: UMCG Het meten van de kwaliteit van leven bij kinderen met JIA Marlot Schuurman Drs. W. Armbrust, kinderarts-reumatoloog Beatrix Kinderkliniek Dr. J. Bouma, coördinator Wetenschapswinkel Geneeskunde en Volksgezondheid UMCG Prof. Dr. R. Sanderman, Health Psychology Research SHARE / DG Gezondheidswetenschappen UMCG / Klinische- en Ontwikkelingspsychologie Rijksuniversiteit Groningen Vraagindiener: Drs W. Armbrust, Kindergeneeskunde UMCG en Drs. O. Lelieveld Revalidatie UMCG Uitgave: Adres: Wetenschapswinkel Geneeskunde en Volksgezondheid UMCG Hanzeplein1, 9713 GZ, Groningen Telefoon: j.tuinstra@med.umcg.nl
4 Datum: Mei 2011
5 Samenvatting Het project is een interactief cognitief gedragsmatig programma gericht op het bevorderen van het activiteiten niveau van kinderen met Juveniele Idiopathische Artritis (jeugdreuma, JIA). Kinderen die aan dit project meedoen krijgen via internet thuis opdrachten en informatie, om zo hun activiteitenniveau te verhogen (Lelieveld, 2010). De kwaliteit van leven is in dit onderzoek een secundaire uitkomstmaat. In een pilotonderzoek naar het effect van is de DISABKIDS-vragenlijst gebruikt om de kwaliteit van leven voor en na de interventie te meten (Bosman, 2010). De DISABKIDS-vragenlijst meet met behulp van een chronisch-specifieke module en een ziekte specifieke module de kwaliteit van leven. De module voor chronische ziekten is in te vullen door kinderen met een chronische ziekte en hun ouders. De ziekte specifieke module bestaat voor kinderen met astma, constitutioneel eczeem, hersenverlamming, cystic fibrosis, diabetes, epilepsie en artritis (The DISABKIDS Group). In een vervolgonderzoek naar zal de PedsQL vragenlijst gebruikt worden om de kwaliteit van leven te meten. Ook de PedsQL vragenlijst bevat een module voor chronische ziekten en een aantal ziekte specifieke modules (Degotardi, 2003). Om de uitkomsten van beide onderzoeken te kunnen interpreteren zal, met behulp van een literatuuronderzoek, een vergelijking gemaakt worden tussen deze twee meetinstrumenten op het gebied van de kwaliteit van leven. Voor de literatuurstudie zijn de databases PubMed en PsychINFO doorzocht. Deze vergelijking is noodzakelijk om de resultaten en de verschillen in resultaten van een pilotonderzoek en een vervolgonderzoek te kunnen interpreteren. Daarnaast is het belangrijk de twee vragenlijsten te vergelijken op validiteit en bruikbaarheid. Alle aspecten van de instrumenten zullen vergeleken worden. Na vergelijking blijkt de DISABKIDS-vragenlijst geschikter voor een onderzoek naar de effecten van de interventie van De DISABKIDS-vragenlijst heeft als voordelen ten opzichte van de PedsQL vragenlijst een hogere interne consistentie en een voldoende gevalideerde Nederlandse versie van de vragenlijst. Om de resultaten van het pilotonderzoek en het vervolgonderzoek te kunnen interpreteren is het belangrijk inzicht te verschaffen over de kwaliteit van leven bij
6 kinderen met JIA. Met behulp van een literatuuronderzoek zal een overzicht gegeven worden. Het algemene beeld wat uit de literatuur naar voren komt is die van een verlaagde kwaliteit van leven bij kinderen met JIA. Kinderen met oligo-articulaire JIA laten weinig verschil met gezonde kinderen zien.
7 Summary The project is an interactive cognitive behavioural program, developed to enhance the level of activity of children with Juvenile Idiopathic Artritis (JIA). Children who participate in this project receive tasks and information, to highten their level of activity (Lelieveld, 2010). The quality of life is a secundary research measure. During the pilot study on the effects of R@W, the DISABKIDS-questionnaire was used to measure the quality of life both befora and after the program (Bosman, 2010). The DISABKIDS-questionnaire consists of a chronic specifiek module and a disease specific module. The first can be completed by children with any chronic disease and their parents, the second module exists for children with asthma, atopic dermatitis, cerebral palsy, cystic fibrosis, diabetes, epilepsy and arthritis (The DISABKIDS Group). In a follow-up study on R@W the PedsQL questionnaire will be used to measure the quality of life. The PedsQL questionnaire also contains a chronic specific module and a few disease specific module (Degotardi, 2003). To be able to interpret the resultst of both studies, a comparison will be made for these two instruments for measuring the quality of life. For this comparison, a literature study is done, searching both the PubMed database and the PsychINFO database.this comparison is necessary to be able to interpret the differences in the results. In addition it is important to compare both instruments on validity and usefulness. Ll different aspects of both instruments will be included in the comparison. After the comparison, the DISABKIDS-questionnaire seems more advantageous in a research on the effects of R@W. The advantages of the DISABKIDS-questionnaire over the PedsQL questionnaire are a higher internal consistency and a validated Dutch version. To interpret the results of the pilot study it also is important to create an insight into the knowledge about the quality of life of children with JIA. By means of a literature research an overview will be generated. The picture we see in the literature is one of a lower quality of life for children with JIA. Children who suffer from the oligoarticular JIA show less difference with healthy children.
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