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Research ArticlePediatric Rheumatology

Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystemic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance

Daniel B. Horton, Karen B. Onel, Timothy Beukelman and Sarah Ringold
The Journal of Rheumatology March 2017, 44 (3) 352-360; DOI: https://doi.org/10.3899/jrheum.161078
Daniel B. Horton
From the Division of Pediatric Rheumatology, Department of Pediatrics, Rutgers Robert Wood Johnson Medical School, Institute for Health, Health Care Policy and Aging Research, Rutgers Biomedical and Health Sciences, New Brunswick, New Jersey; Division of Pediatric Rheumatology, Department of Pediatrics, Hospital for Special Surgery, Weill Cornell Medical College, New York, New York; Division of Pediatric Rheumatology, Department of Pediatrics, University of Alabama at Birmingham, Birmingham, Alabama; Seattle Children’s Hospital and Research Institute, University of Washington School of Medicine, Seattle, Washington, USA.
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  • For correspondence: daniel.horton@rutgers.edu
Karen B. Onel
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Timothy Beukelman
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Sarah Ringold
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  • Figure 1.
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    Figure 1.

    Importance and ratings of survey items for making decisions about withdrawing therapy for children with JIA and CID. Box plots show responses at the median (vertical black line), between the 25th and 75th percentiles (shaded rectangle), and outside the 25th and 75th percentiles (shaded lines), excluding outliers. ** Clusters of survey items (dark gray bars) were derived by principal components analysis; overall importance/rating of the cluster reflects the highest level among items within that cluster (light gray bars). JIA: juvenile idiopathic arthritis; CID: clinical inactive disease; SIJ: sacroiliac joint; TMJ: temporomandibular joint.

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    Figure 2.

    Influence of JIA category on likelihood of stopping medications for patients with CID. JIA: juvenile idiopathic arthritis; CID: clinical inactive disease; Oligo, Persist.: persistent oligoarticular JIA; Oligo, Extend.: extended oligoarticular JIA; RF: rheumatoid factor; Poly, RF neg.: RF-negative polyarticular JIA; Poly, RF pos.: RF-positive polyarticular JIA; Psor.: psoriatic JIA; ERA: enthesitis-related arthritis; Undiff.: undifferentiated JIA.

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    Figure 3.

    Minimum time that patients with JIA should have CID before withdrawing methotrexate or biologic monotherapy. JIA: juvenile idiopathic arthritis; CID: clinical inactive disease.

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    Figure 4.

    Strategies for withdrawing methotrexate or biologic monotherapy for patients with JIA and CID. Respondents could choose more than 1 strategy. JIA: juvenile idiopathic arthritis; CID: clinical inactive disease.

Tables

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    Table 1.

    Characteristics of survey respondents who reported taking care of children with JIA. Values are n (%).

    CharacteristicsTotal, n = 121
    Clinical involvement
      Attending105 (87)
      Fellow13 (11)
      Nurse practitioner3 (2)
    Yrs since training, excluding fellows
      < 526 (21)
      5–923 (19)
      ≥ 1059 (49)
    Clinical expertise
      Pediatric only105 (87)
      Pediatric and adult16 (13)
    Clinical time of total professional time, %
      ≥ 50%88 (73)
      < 50%33 (27)
    JIA Committee membership
      Yes61 (50)
      No60 (50)
    • JIA: juvenile idiopathic arthritis.

    • View popup
    Table 2.

    Considerations for withdrawing JIA medications and participants’ estimates of patient outcomes after treatment withdrawal. Values are n (%).

    Survey Questions and ResponsesValues
    What factor(s), if present, would make you reluctant or hesitant to taper/stop MTX or a biologic drug for a patient who otherwise has had clinical inactive disease for a sufficient amount of time? (Assume the family is interested in stopping the medication.)*
      History of erosive joint disease98 (81)
      Asymptomatic joint(s) with abnormalities on ultrasound (e.g., increased Doppler signal) or MRI (e.g., edema or enhancement)87 (72)
      Failure of multiple prior DMARD/biologics77 (64)
      Presence of brief morning stiffness (< 15 min)23 (19)
      Intermittent joint pain with normal joint exam13 (11)
      History of prior flares upon drug discontinuation**5 (4)
    If a patient has inactive disease on combination MTX/biologic therapy, which do you prefer to taper/stop first?
      MTX76 (63)
      Biologic12 (10)
      Depends33 (27)
    What specific factors are important in deciding which medicine to stop first?*
      History of toxicity or intolerance**12 (10)
      Patient/family preference**6 (5)
      Relative effect on disease control**6 (5)
      Cost of or access to drug**3 (2)
    Do you use imaging to determine whether to reduce/stop MTX/biologic therapy?†
      Often11 (9)
      Sometimes43 (36)
      Seldom53 (44)
      Never14 (12)
    Which imaging modalities do you use to guide your decision?*†
      MRI87 (72)
      Ultrasound38 (31)
      Radiograph28 (23)
    Beyond discussing with the patient/family, do you use specific patient/parent-reported outcomes to decide whether to reduce/stop therapy?*30 (25)
       Patient’s/parent’s global score25 (21)
      Patient pain score18 (15)
      Functional score (e.g., CHAQ)15 (12)
      Quality of life score (e.g., PRQL)3 (2)
    Among those who discontinued DMARD/biologic therapy, about what percentage flared within 1 yr?
      0%–24%19 (16)
      25%–49%47 (39)
      50%–74%31 (26)
      75%–100%1 (1)
      Not enough experience to give a number23 (19)
    Among those who flared, about what percentage could you regain inactive disease within 3 mos by restarting their last medication regimen? (n = 97)
      0%–24%4 (4)
      25%–49%21 (22)
      50%–74%45 (46)
      75%–100%27 (28)
    • ↵* Respondents could choose more than 1 answer.

    • ↵** Factor listed by participants that was not a pre-existing survey choice.

    • ↵† Not including arthritis of the temporomandibular joint. JIA: juvenile idiopathic arthritis; MTX: methotrexate; MRI: magnetic resonance imaging; DMARD: disease-modifying antirheumatic drug; CHAQ: Childhood Health Assessment Questionnaire; PRQL: Pediatric Rheumatology Quality of Life Scale.

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Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystemic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance
Daniel B. Horton, Karen B. Onel, Timothy Beukelman, Sarah Ringold
The Journal of Rheumatology Mar 2017, 44 (3) 352-360; DOI: 10.3899/jrheum.161078

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Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystemic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance
Daniel B. Horton, Karen B. Onel, Timothy Beukelman, Sarah Ringold
The Journal of Rheumatology Mar 2017, 44 (3) 352-360; DOI: 10.3899/jrheum.161078
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Keywords

JUVENILE IDIOPATHIC ARTHRITIS
PEDIATRIC RHEUMATIC DISEASES
CLINICAL DECISION MAKING
CLINICAL INACTIVE DISEASE

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