Functioning and quality of life as perspectives of health in patients with juvenile idiopathic arthritis in early adulthood : measurement and long-term outcome

Abstract

First aim of this study entity was to evaluate the results of treatment and rehabilitation in patients with juvenile idiopathic arthritis (JIA). The long-term health outcomes in the early adulthood were evaluated in the framework of the International classification of functioning, disability and health (ICF). The second aim of this study entity was to evaluate the psychometric characteristics of two multidimensional measures of functioning which were used in the outcome evaluations.For the outcome evaluations young adult patients with JIA were gathered from the patient files of the Rheumatism Foundation Hospital (RFH), Heinola, Finland. The patients were evaluated during a one-day visit to the RFH by a multidisciplinary team. Patients completed Finn-AIMS2, Finn-MDHAQ and the quality of life (QoL) (RAND-36) questionnaires. Age-, sex- and domicile matched controls were gathered from the Finnish population registry. The validity and reliability of the Finnish versions of the Arthritis impact measurement scales 2 (AIMS2) and the Multidimensional health assessment questionnaire (MDHAQ) were evaluated in two Finnish adult rheumatoid arthritis (RA) populations.Sixty-three per cent of young adult patients with JIA had active disease at a mean age of 23 years after a mean follow-up of 16 years. Patients experienced more pain, had lower levels of mobility and social life than controls. In patients with active disease versus controls the differences became even more conspicuous. In all, 20% of the patients had uveitis diagnosed during the course of the disease. Levels of education and employment in patients with JIA were similar to controls. Patients rated their QoL similar to controls except in one sub area of physical health. In the areas of mental health patients with JIA and controls evaluated their QoL similarly. Patients with active disease rated their QoL lower in all areas of physical health compared to patients in remission and controls. On the contrary mental health was found to be similar between all patient groups and controls. Finn-AIMS2 and Finn-MDHAQ were found to be valid, reliable and applicable for outcome studies in adult RA age groups.In conclusion, gaining remission and active treatment and rehabilitation interventions designed to maintain functioning should be a high priority in clinical practice in young adult patients with JIA. ICF can offer a promising tool in providing a wide perspective on health outcome evaluations and a unified language between different health professionals nationally and internationally. Minor modifications suggested in the Finn-MDHAQ would benefit application of the instrument in the future. The appropriateness of both measures, Finn-AIMS2 and Finn-MDHAQ, for the young adult age groups should still be reinforced in further studies.

Marja Arkela-Kautiainen tutki lastenreumaa sairastaneiden nuorten aikuisten terveyttä, toimintakykyä ja elämänlaatua.– Lähes kaksi kolmasosaa nuorista aikuisista kärsi taudista edelleen. Heidän fyysinen toimintakykynsä oli heikentynyt verrattuna sellaisiin nuoriin, jotka eivät ole sairastaneet lastenreumaa, Arkela-Kautiainen toteaa.Fyysinen toimintakyky oli huonompi myös verrattuna niihin nuoriin, jotka olivat sairastaneet lastenreumaa, mutta eivät tutkimushetkellä kärsineet sen oireista. Psyykkisessä toimintakyvyssä ei sen sijaan ollut eroja lastenreumaa sairastaneiden ja sairastamattomien välillä.Arkipäivän hoidon tärkein tavoite lastenreumaan sairastuneiden lasten ja nuorten hoidossa on sammuttaa taudin aktiviteetti. Lisäksi aktiivista lastenreumaa sairastavat nuoret tarvitsevat tehokkaita hoito- ja kuntoutustoimia, joiden avulla toimintarajoitteiden kehittyminen voidaan välttää. Näin voidaan mahdollistaa myös parempi elämänlaatu varhaisessa aikuisiässä.Arkela-Kautiaisen tutkimuksen tuloksia voidaan hyödyntää lastenreumaa sairastavien lasten ja nuorten hoidon ja kuntoutuksen suunnittelussa, kehittämisessä ja laadun arvioinnissa. Tavoitteena on, että palvelut tukisivat paremmin lasten ja nuorten hyvinvoinnin edellytyksiä. Toisaalta tutkimustulosten toivotaan vaikuttavan hoito- ja kuntoutuspäätöksiä tekeviin viranomaisiin perusterveydenhuollossa, erikoissairaanhoidossa ja Kansaneläkelaitosten paikallistoimistoissa.