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Background <p>The care of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is challenging due to the lack of expertise, the need for interdisciplinary care and the limited mobility of the affected individuals. The aim of this study was to develop a&#xa0;care model at a&#xa0;social pediatric center (SPZ) with treatment options, such as video consultations and online group training, and to assess the care effort required.</p> Material and methods <p>Patients with ME/CFS under 21&#xa0;years of age could choose to continue treatment at an SPZ for at least 3&#xa0;months. Interdisciplinary care was provided through online consultations. In addition, online group education sessions for patients, their relatives and school staff were developed and conducted. During the project, the effort in terms of direct patient contacts, organization, case discussions and administration was documented and analyzed.</p> Results <p>A&#xa0;total of 24&#xa0;patients participated in the study. The total effort for each patient was 240 min of direct patient contact and 262 min for organization, case discussions and administrative tasks within the 3‑month period of care at the SPZ. No differences in effort were observed between patients under and older than 18&#xa0;years of age. Of the additional group education sessions offered to patients and parents, an average of 64% of the modules were utilized.</p> Discussion <p>An interdisciplinary care model for children and adolescents with ME/CFS involving an SPZ is feasible. The online education sessions showed high acceptance and could lead to a&#xa0;reduced care effort due to the knowledge acquired there.</p>

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Entwicklung eines neuen interdisziplinären Versorgungsmodells für Kinder und Jugendliche mit Myalgischer Enzephalitis/Chronic Fatigue-Syndrom (ME/CFS) unter Einbindung eines sozialpädiatrischen Zentrums (SPZ)

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  • 出版模式：

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  • 发表日期：

    2025年10月16日

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  • Franca Keicher,
  • Julia Thomann,
  • Jana Erlenwein,
  • Nils Lennart Reiter,
  • Nadine Patricia Scholz-Schwärzler,
  • Barbara Vogel,
  • Cordula Warlitz,
  • Linda Schanz,
  • Veronika Dodel,
  • Charlotte Zipper,
  • Nicole Schiweck,
  • Robert Jaeschke,
  • Kristina Dettmer,
  • Stephanie Englbrecht,
  • Milica Saramandic,
  • Silvia Augustin,
  • Silvia Stojanov,
  • Uta Behrends,
  • Juliane Spiegler

摘要

Background

The care of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is challenging due to the lack of expertise, the need for interdisciplinary care and the limited mobility of the affected individuals. The aim of this study was to develop a care model at a social pediatric center (SPZ) with treatment options, such as video consultations and online group training, and to assess the care effort required.

Material and methods

Patients with ME/CFS under 21 years of age could choose to continue treatment at an SPZ for at least 3 months. Interdisciplinary care was provided through online consultations. In addition, online group education sessions for patients, their relatives and school staff were developed and conducted. During the project, the effort in terms of direct patient contacts, organization, case discussions and administration was documented and analyzed.

Results

A total of 24 patients participated in the study. The total effort for each patient was 240 min of direct patient contact and 262 min for organization, case discussions and administrative tasks within the 3‑month period of care at the SPZ. No differences in effort were observed between patients under and older than 18 years of age. Of the additional group education sessions offered to patients and parents, an average of 64% of the modules were utilized.

Discussion

An interdisciplinary care model for children and adolescents with ME/CFS involving an SPZ is feasible. The online education sessions showed high acceptance and could lead to a reduced care effort due to the knowledge acquired there.