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Improving Outcomes for Juvenile Idiopathic Arthritis

15. juni 2026 opdateret af: Region Stockholm

Improving Outcomes for Children Newly Diagnosed With Juvenile Idiopathic Arthritis Through a Structured Support Program (JASP-1) - A Longitudinal Register Study

Children and parents often experience uncertainty and stress when juvenile idiopathic arthritis (JIA) is first diagnosed, which creates a need for structured support. Juvenile Idiopathic Support Program (JASP-1) provide patient-and family centered support during the first year after diagnosis. However, little is known about how a support program like JASP-1 can influence outcomes. Therefore, this study aimed to longitudinally examine registry data from children who participated in JASP 1 and to compare the outcomes with registry data from a matched control group.

Studieoversigt

Status

Afsluttet

Betingelser

Intervention / Behandling

Detaljeret beskrivelse

Methods: The study is a longitudinal register study with data from the Swedish Pediatric Rheumatology Quality Register (PedSRQ). Data included outcome measures from the child and/or the parents as well as clinical information's from the physicians.

Undersøgelsestype

Interventionel

Tilmelding (Faktiske)

116

Fase

  • Ikke anvendelig

Kontakter og lokationer

Dette afsnit indeholder kontaktoplysninger for dem, der udfører undersøgelsen, og oplysninger om, hvor denne undersøgelse udføres.

Studiesteder

  • Sverige
      • Stockholm, Sverige, 17176
        • Karolinska University Hospital

Deltagelseskriterier

Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.

Berettigelseskriterier

Aldre berettiget til at studere

  • Barn

Tager imod sunde frivillige

Ingen

Beskrivelse

Inclusion Criteria:

  • For the JASP-1: Diagnosed with JIA and have completed the JASP-1.
  • For the control group: Diagnosed with JIA at the same clinic as above

Exclusion Criteria:

  • No JIA diagnosis
  • Change of diagnose during the year
  • Do not understand or speak Swedish

Studieplan

Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.

Hvordan er undersøgelsen tilrettelagt?

Design detaljer

  • Primært formål: Støttende pleje
  • Tildeling: Ikke-randomiseret
  • Interventionel model: Enkelt gruppeopgave
  • Maskning: Ingen (Åben etiket)

Våben og indgreb

Deltagergruppe / Arm
Intervention / Behandling
Eksperimentel: Participating in the Juvenile Arthritis Support Program (JASP-1)
Children newly diagnosed with JIA and their parents were invited to participate in the intervention JASP-1. The intervention contains seven structured patient-and family centered visits the first year after JIA diagnose. With more visits close in the beginning.
Adfærdsmæssigt: The intervention was a one year support program JASP-1
Seven structured visits with a patient-and family-centered approach was used in the JASP-1 program, in which children newly diagnosed with JIA and their parents were invited to participate in.
Ingen indgriben: Control group
This arm is a control group consisting of 60 children matched in diagnose, gender and age with the ones in the intervention group. The children and parents in the control group did not receive any intervention. The data was collected from the PedSRQ register.

Hvad måler undersøgelsen?

Primære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
CHAQ, Disabkids, Physicians global assessment
Tidsramme: For one year following JIA diagnosis

56 children received JASP-1and was on 3 timepoints compared with 60 children matched in disease, gender and age.The measures compared is CHAQ including pain, disease impact on overall well-being and school attendance, DISABKIDS, JADAS-71, Physicians global assessment, Number of active joints, Number of joint injections and Pharmacological treatment.

Outcomes at 12 months, were analyzed using the non parametric Mann-Whitney U test. For categorical variables differences were analyzed using the chi-square test to compare proportions. Repeated measurement ANOVA was used for calculating differences over time between the two groups. P value < 0.05 was considered statistically significant. Statistical analyses were performed using IBM SPSS Statistics for Windows, version 31.
For one year following JIA diagnosis
CHAQ
Tidsramme: Assessed several times during the first year after diagnosis. Values from 0-3
Childhood Health Assessment Queationnaire
Assessed several times during the first year after diagnosis. Values from 0-3
Disabkids
Tidsramme: Assessed at 3 timepoints during the first year, values between 0-100
Health Related Quality of Life
Assessed at 3 timepoints during the first year, values between 0-100
Phycisians global assessment
Tidsramme: During the first year after diagnosis
Assessed at 3 timepoint during the first year after diagnosis. Valued on a VAS scale 0-10
During the first year after diagnosis

Samarbejdspartnere og efterforskere

Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.

Sponsor

Region Stockholm

Samarbejdspartnere

Karolinska University Hospital
Karolinska Institutet

Datoer for undersøgelser

Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.

Studer store datoer

Studiestart (Faktiske)

15. august 2019

Primær færdiggørelse (Faktiske)

19. februar 2026

Studieafslutning (Faktiske)

19. februar 2026

Datoer for studieregistrering

Først indsendt

26. maj 2026

Først indsendt, der opfyldte QC-kriterier

15. juni 2026

Først opslået (Faktiske)

22. juni 2026

Opdateringer af undersøgelsesjournaler

Sidste opdatering sendt (Faktiske)

22. juni 2026

Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier

15. juni 2026

Sidst verificeret

1. maj 2026

Mere information

Begreber relateret til denne undersøgelse

Nøgleord

Andre undersøgelses-id-numre

  • K 2026-0525

Plan for individuelle deltagerdata (IPD)

Planlægger du at dele individuelle deltagerdata (IPD)?

INGEN

Lægemiddel- og udstyrsoplysninger, undersøgelsesdokumenter

Studerer et amerikansk FDA-reguleret lægemiddelprodukt

Ingen

Studerer et amerikansk FDA-reguleret enhedsprodukt

Ingen

Disse oplysninger blev hentet direkte fra webstedet clinicaltrials.gov uden ændringer. Hvis du har nogen anmodninger om at ændre, fjerne eller opdatere dine undersøgelsesoplysninger, bedes du kontakte register@clinicaltrials.gov. Så snart en ændring er implementeret på clinicaltrials.gov, vil denne også blive opdateret automatisk på vores hjemmeside .

Kliniske forsøg med Juvenil idiopatisk arthritis

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Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

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Betingelser

Sjældne sygdomme

Narkotikainterventioner

Kosttilskud

Sponsor / samarbejdspartnere

Placeringer

Abonner