Neuropediatrics 2025; 56(S 01): S1-S24
DOI: 10.1055/s-0045-1812156
Neuroinflammatory Disorders

Patient and Parent Perception of the Diagnostic Process in Swiss Children with Pediatric-Onset Inflammatory Brain Diseases

Authors

  • L. Hulliger

    1   ISPM/University of Bern, Bern, Switzerland

  • I. Christen

    1   ISPM/University of Bern, Bern, Switzerland

  • M. Roumet

    2   DCR/University of Bern, Bern, Switzerland

  • S. Bigi

    1   ISPM/University of Bern, Bern, Switzerland
    3   Department of Neuropediatrics, Kinderspital Zentralschweiz, Luzern, Switzerland
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Background/Purpose: Inflammatory brain diseases in children are rare and poorly understood, with overlapping clinical presentations that challenge patients, families, and clinicians. To explore patient and parent perception of the diagnostic process and improve diagnostic communication, we surveyed patients enrolled in the Swiss Pediatric Inflammatory Brain Disease Registry and/or their families.

Methods: We adapted a questionnaire for children, adolescents, and parents, originally used in adults with MS. The survey was conducted between December 2023 and March 2024. Primary outcomes were satisfaction with general medical care (SGMC) and satisfaction with the first diagnostic consultation (SFDC), measured on a 0 to 100 scale and reported as median (Q1, Q3). We analyzed the influence of participant and consultation characteristics on SGMC and SFDC of patients and parents using uni- and multivariable regression models.

Results: SGMC was high in both patients (86 [68, 98]) and parents (86 [70, 100]). SFDC was lower in patients (68 [50, 88]) than in parents (79 [62, 94]). Among participant characteristics, only parents’ comprehension of the diagnosis significantly impacted SFDC in both univariate and multivariate analyses (p = 0.032, β = 15; p = 0.037, β = 15). Among consultation characteristics, only the number of topics discussed significantly influenced patients’ SFDC in both analyses (p = 0.005, β = 3.1; p = 0.014, β = 3.3).

Conclusion: Although SGMC and SFDC were high among patients and parents, both can be improved. We identified parents’ understanding of the diagnosis as a factor influencing parent SFDC, and the number of topics discussed during the first diagnostic consultation as a factor for patient SFDC. While enhancing parental understanding is inherently difficult, increasing the number of relevant topics discussed is readily modifiable. Simple tools like topic checklists could standardize discussions, offering an opportunity to improve patient SFDC and overall diagnostic communication.



Publication History

Article published online:
26 September 2025

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