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Published on: September 12, 2020
Towards new perspectives: International consensus guidance on dystonia in pediatric palliative care
Anna Mercante1, Nardo Nardocci2, Emilio Fernández-Alvarez3
1Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy.
Insights
Pediatric dystonias significantly impact children needing palliative care (PPC). This study established international expert consensus for standardized dystonia assessment and management in PPC, improving care for this vulnerable group.
Area of Science:
- Neurology
- Palliative Care
- Pediatrics
Background:
- Pediatric dystonias present diverse etiologies and clinical needs, particularly in children requiring pediatric palliative care (PPC).
- Dystonia significantly affects quality of life for children and causes distress for caregivers.
- Limited evidence exists for managing dystonia in PPC, highlighting an urgent need for recognition and intervention.
Purpose of the Study:
- To establish a standardized approach for addressing dystonia within pediatric palliative care (PPC).
Main Methods:
- A two-round Delphi process involving 71 international experts from various disciplines.
- Experts provided input on the definition, assessment, monitoring, and treatment of dystonia in PPC via an online questionnaire.
Main Results:
- Fifty-three consensus-based recommendations for dystonia management in PPC were endorsed by the expert panel.
Conclusions:
- Childhood dystonia in PPC presents clinical challenges due to limited knowledge.
- This study provides the first international consensus on dystonia in PPC.
- Novel approaches are offered to reduce the burden of dystonia and advance clinical practice for vulnerable children.
Background:
Pediatric dystonias are associated with a broad spectrum of etiologies, resulting in a heterogeneous patient population in whom clinical presentation, evolution, and therapeutic needs may differ. These neurological symptoms are particularly common in children and adolescents with life-limiting and life-threatening conditions requiring pediatric palliative care (PPC). The impact on the child's quality of life is significant, as is distress for caregivers. Addressing and alleviating dystonia is key to providing good palliative care; however, there is limited evidence. A greater recognition and management of dystonia in this setting is urgently needed to provide appropriate interventions and care.
Objectives:
To develop a standardized approach to dystonia in PPC.
Materials And Methods:
A two-round Delphi process explored the views of experts on the definition, assessment, monitoring, and treatment of dystonia in PPC. Professionals from different backgrounds and disciplines were invited worldwide. The final panel comprised 71 participants who completed a multi-statement online questionnaire.
Results:
Fifty-three items were endorsed, providing expert, consensus-based recommendations.
Conclusions:
The limited clinical knowledge of childhood dystonia represents a challenge, especially in children with palliative care needs. This study is a first international consensus on dystonia in PPC and offers novel approaches to improving the dystonia-related burden and advancing clinical practice in this vulnerable population.
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