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. 2023 Apr 12;21(1):31.
doi: 10.1186/s12969-023-00811-0.

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

Sabine Kirchner  1 , Jens Klotsche  1 , Ina Liedmann  1 , Martina Niewerth  1 , Debbie Feldman  2 , Frank Dressler  3 , Ivan Foeldvari  4 , Dirk Foell  5 , Johannes-Peter Haas  6 , Gerd Horneff  7   8 , Anton Hospach  9 , Tilmann Kallinich  1   10 , J B Kuemmerle-Deschner  11 , Kirsten Moenkemoeller  12 , Frank Weller-Heinemann  13 , Daniel Windschall  14   15 , Kirsten Minden #  1   10 , Claudia Sengler #  16
Affiliations

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

Sabine Kirchner et al. Pediatr Rheumatol Online J. .

Abstract

Objectives: To 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).

Methods: The 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.

Results: Four 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.

Conclusions: The 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.

Keywords: Adherence; Exercise; Juvenile idiopathic arthritis; Medication; Treatment.

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Conflict of interest statement

SK: none; JK: none; IL: none; MN: none; DEF: none, FD: speaker`s fees from Novartis and Pfizer; IF: none, DF: none. JPH: none, GH: grants and personal fees from Abbvie, Chugai, MSD, Novartis, Pfizer, Roche, personal fees from Sobi, GSK, Sanofi, Bayer, AH: none, TK: none, JKD: none, KMm: none, FWH: none, DW: none, KM: received honoraria from Pfizer, Novartis and medac, CS: none.

Figures

Fig. 1
Fig. 1
Parent-reported barriers to treatment adherence. Legend: Out of 357 parents of children with any medical measure (drug therapy, exercises or orthopaedic splints), 327 answered the questions regarding barriers in treatment adherence of their children. 128 (39%) reported barriers to their child's treatment adherence
Fig. 2
Fig. 2
The Child Ability Total Scores (CATS) of PARQ and CARQ with respect to treatment types. Legend: Boxplots represent the distribution of the CATS values, with the horizontal line representing the median and the upper and lower ends of the box representing the 75th and 25th percentiles, respectively, for patients aged 8–12 years (A) and patients equal or above 13 years (B). For comparison of the PARQ and CARQ, patient proxy and self-reports were available of 63 pairs for medication treatment, 29 pairs for exercise treatment, and 13 pairs for splint therapy
See this image and copyright information in PMC

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