Evidence map›Paper›PMID 37046303›Full record

ArticlePediatric rheumatology online journal2023

Adherence, helpfulness and barriers to treatment in juvenile idiopathic arthritis - data from a German Inception cohort.

Sabine Kirchner, Jens Klotsche, Ina Liedmann, Martina Niewerth, Debbie Feldman, Frank Dressler, Ivan Foeldvari, Dirk Foell, Johannes-Peter Haas, Gerd Horneff and 8 more

Open access · goldAbstract read
In one paragraph

Article in Pediatric rheumatology online journal, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
2.3field-weighted citation impact, top 11% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 8 citations in OpenAlex.

  1. Review
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  5. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

18 authors at 12 institutions in 2 countries.

Sabine KirchnerDeutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
Jens KlotscheDeutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
Ina LiedmannDeutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
Martina NiewerthDeutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
Debbie FeldmanFaculty of Medicine, School of Rehabilitation, Université de Montréal, Montreal, QC, Canada.
Frank DresslerClinic for Paediatric PneumologyAllergology and Neonatology, Children's Hospital, Medical School Hannover, Hannover, Germany.
Ivan FoeldvariHamburg Centre for Pediatric and Adolescence Rheumatology, Paediatric Rheumatology, Hamburg, Germany.
Dirk FoellDepartment of Paediatric Rheumatology and Immunology, University Hospital Muenster, Muenster, Germany.
Johannes-Peter HaasGerman Centre for Child and Adolescent Rheumatology, Paediatric Rheumatology, Garmisch-Partenkirchen, Germany.
Gerd HorneffAsklepios Klinik St. Augustin, St. Augustin, Germany.
Anton HospachOlga Hospital, Department of Pediatrics, Stuttgart, Germany.
Tilmann KallinichDeutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
J B Kuemmerle-DeschnerDivision of Pediatric Rheumatology and Autoinflammation Reference Center Tübingen, Department of Pediatrics, University Hospital Tübingen, Tübingen, Germany.
Kirsten MoenkemoellerKliniken Köln - Kinderkrankenhaus Amsterdamer Str, Paediatric Rheumatology, Cologne, Germany.
Frank Weller-HeinemannKlinikum Bremen-Mitte, Prof-Hess-KinderklinikPaediatric Rheumatology, Bremen, Germany.
Daniel WindschallClinic for Paediatric and Adolescent Rheumatology, Northwest German Center for Rheumatology, St. Josef Stift Sendenhorst, Sendenhorst, Germany.
Kirsten Minden *Deutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany.
Claudia Sengler *Deutsches Rheuma-Forschungszentrum Berlin, Leibniz Institute, Epidemiology Unit, Pediatric Rheumatology, Charitéplatz 1, 10117, Berlin, Germany. sengler@drfz.de.ORCID http://orcid.org/0000-0002-6703-0269
German Rheumatism Research Centre · DEHumboldt-Universität zu Berlin · DEAltonaer Kinderkrankenhaus · DEAsklepios Klinik Sankt Augustin · DEGerman Center for Pediatric and Adolescent Rheumatology · DEMartin Luther University Halle-Wittenberg · DEMedizinische Hochschule Hannover · DEOlgahospital · DEProf. Hess Kinderklinik · DEUniversité de Montréal · CAUniversity Children's Hospital Tübingen · DEUniversity Hospital Münster · DE

Funding

Bundesministerium für Bildung, Wissenschaft und Forschung FKZ 01ER0812Bundesministerium für Bildung, Wissenschaft und Forschung FKZ 01ER1504A-C
6 · The paper itself

Abstract

objectivesTo develop and evaluate German versions of the Parent Adherence Report Questionnaire (PARQ) and Child Adherence Report Questionnaire (CARQ) and to evaluate adherence in patients with juvenile idiopathic arthritis (JIA).

methodsThe PARQ and CARQ were translated into German, cross-culturally adapted and administered to patients (age ≥ 8 years) and their parents enrolled in the Inception Cohort Study of newly diagnosed JIA patients (ICON). The psychometric issues were explored by analyzing their test-retest reliability and construct validity.

resultsFour hundred eighty-one parents and their children with JIA (n = 465) completed the PARQ and CARQ at the 4-year follow-up. Mean age and disease duration of patients were 10.1 ± 3.7 and 4.7 ± 0.8 years, respectively. The rate of missing values for PARQ/CARQ was generally satisfactory, test-retesting showed sufficient reliability. PARQ/CARQ mean child ability total scores (0-100, 100 = best) for medication were 73.1 ± 23.3/76.5 ± 24.2, for exercise: 85.6 ± 16.5/90.3 ± 15.0, for splints: 72.9 ± 24.2/82.9 ± 16.5. Construct validity was supported by PARQ and CARQ scores for medications, exercise and splints showing a fair to good correlation with the Global Adherence Assessment (GAA) and selected PedsQL scales. Adolescents showed poorer adherence than children. About one third of the parents and children reported medication errors. Perceived helpfulness was highest for medication, and adverse effects were reported the greatest barrier to treatment adherence.

conclusionsThe German versions of the PARQ and CARQ appear to have a good reliability and sufficient construct validity. These questionnaires are valuable tools for measuring treatment adherence, identifying potential barriers and evaluating helpfulness of treatments in patients with JIA.

Indexed as

Arthritis, JuvenileAdolescentCase-Control StudiesChildCohort StudiesDisability EvaluationExerciseHealth StatusHumansParentsPsychometricsQuality of LifeReproducibility of ResultsTranslatingAdherenceExerciseJuvenile idiopathic arthritisMedicationTreatment

Identifiers

PMID37046303
PMCPMC10091650
OpenAlexW4365142430

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.