Scholarlink

<p>Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in childhood and adolescence. While medical care has traditionally focused heavily on objective parameters such as C‑reactive protein (CRP), erythrocyte sedimentation rate (ESR), and imaging findings, conversations with affected individuals reveal that this perspective inadequately reflects the actual needs of patients. The example of methotrexate (MTX) therapy illustrates the discrepancy between laboratory values and subjective burden: nausea, headaches, and psychosocial limitations can be significant despite stable test results and can impair treatment adherence. Parents of affected children also express additional needs, such as education, psychological support, and practical coping strategies for everyday life. These conversations show that patients often prioritize treatment goals such as functional ability in daily life, social participation, reduction of side effects, and long-term discontinuation of medication over the primary medical goal of remission. This results in a&#xa0;clear mandate for future care: a&#xa0;more consistent implementation of shared decision-making, the development of patient-oriented parameters, an improved study situation regarding patient perspectives, and structured training programs for those affected and their relatives.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

Die Patientenperspektive bei juveniler idiopathischer Arthritis: Was sind eigentlich unsere Ziele?

  • 期刊论文

  • 发表日期：

    2026年2月2日

查看全文
  • Phil Oliver Ladehof

摘要

Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in childhood and adolescence. While medical care has traditionally focused heavily on objective parameters such as C‑reactive protein (CRP), erythrocyte sedimentation rate (ESR), and imaging findings, conversations with affected individuals reveal that this perspective inadequately reflects the actual needs of patients. The example of methotrexate (MTX) therapy illustrates the discrepancy between laboratory values and subjective burden: nausea, headaches, and psychosocial limitations can be significant despite stable test results and can impair treatment adherence. Parents of affected children also express additional needs, such as education, psychological support, and practical coping strategies for everyday life. These conversations show that patients often prioritize treatment goals such as functional ability in daily life, social participation, reduction of side effects, and long-term discontinuation of medication over the primary medical goal of remission. This results in a clear mandate for future care: a more consistent implementation of shared decision-making, the development of patient-oriented parameters, an improved study situation regarding patient perspectives, and structured training programs for those affected and their relatives.