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Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis

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Abstract

Objectives

To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis.

Methods

A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27.

Results

The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890–0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician’s scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6).

Conclusions

Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children’s adherence to therapy, comorbidities, and motivation on an individual basis.

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Acknowledgments

We express thanks to all participants, our colleagues, research assistants, and nurses for their cooperation and help to bring this research to its final conclusions. Special thanks to Mr. Ali El Miedany (DGS-Dartford, England) for his contribution in the illustration selection and data entry. Other investigators who contributed to the study were the following: W.H (Rheumatology and Rehabilitation, Benha University, Benha, Egypt), M.M (Rheumatology and Rehabilitation, Zagazig University, Zagazig, Egypt), and M.E (Rheumatology and Rehabilitation, Cairo University, Cairo, Egypt).

Author information

Authors and Affiliations

  1. Rheumatology and Rehabilitation, School of Medicine, Ain Shams University, Cairo, Egypt

    Yasser El Miedany, N. El Aroussy & D. Mekkawy

  2. Rheumatology, Darent Valley Hospital, Dartford, Kent, England, DA2 8DA, UK

    Yasser El Miedany

  3. Community and Public Health, School of Medicine, Ain Shams University, Cairo, Egypt

    M. El Gaafary

  4. Pediatrics, School of Medicine, Cairo University, Cairo, Egypt

    H. Lotfy & Y. Farag

  5. Rheumatology and Rehabilitation, School of Medicine, Suez Canal University, Ismaillia, Egypt

    S. I. Nasef

  6. Pediatrics, School of Medicine, Alexandria University, Alexandria, Egypt

    G. Elderiny

  7. Rheumatology and Rehabilitation, Tanta University, Tanta, Egypt

    M. Hassan

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  1. Yasser El Miedany
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Contributions

All authors contributed in the study methodology, analysis, and interpretation of the data and outcomes as well as the manuscript writing, reading, and approval of the final version. Prof. EG carried out the statistical analysis and reviewed the “Methods” and “Results” sections.

Corresponding author

Correspondence to Yasser El Miedany.

Ethics declarations

Local ethical and methodological protocols for approval of the study were followed. All the patients who participated in the study signed an informed consent according to the Declaration of Helsinki (at the General Assembly in October 2008) and ensured that their data is kept confidential after explaining the benefit and potential null risk of the study.

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El Miedany, Y., El Gaafary, M., Lotfy, H. et al. Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis. Clin Rheumatol 38, 2219–2226 (2019). https://doi.org/10.1007/s10067-019-04490-9

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  • DOI: https://doi.org/10.1007/s10067-019-04490-9

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