Personal pain action plans for children and adolescents with sickle cell disease

Melissa J. Frei-Jones, Michael R. DeBaun

Research output: Chapter in Book/Report/Conference proceedingChapter

2 Scopus citations


Children and adolescents with Sickle Cell Disease [SCD] frequently experience pain, limiting normal activities such as school attendance, work or play. Most pain episodes are managed at home; although, many children require hospitalization. The episodic and unpredictable nature of SCD-related pain requires patient and caregiver recognition of impending pain and implementation of patient specific treatment to relieve and abate symptoms. Pediatric asthma action plans are standard in the management of chronic asthma care, having been included in both national and international standards for pediatric asthma management for more than a decade. The use of Asthma Action Plans in childhood asthma has improved the outpatient management of symptoms and exacerbations while also reducing the frequency of emergency department visits and hospitalizations. Despite the recognized utility of treatment action plans in chronic disease, no systematic action plan has been developed for the treatment of SCD-related pain. We developed a SCD-specific pain action plan [PAP] to promote patient and caregiver education and self-management strategies that are required for successful ongoing treatment. Every child with SCD is required to have a PAP developed, reviewed and revised at each hematology visit. A PAP is implemented in children as young as six months of age before symptoms appeared. In this commentary, we introduce the theoretical basis for to support a patient SCD PAP and describe the benefit and barriers associated with developing and implementing a PAP for children with SCD in a single center. We also identify opportunities for future research to assess the clinical utility of a PAP in SCD.

Original languageEnglish (US)
Title of host publicationAcute Pain
Subtitle of host publicationCauses, Effects And Treatment
PublisherNova Science Publishers, Inc.
Number of pages8
ISBN (Print)9781607412236
StatePublished - 2009


  • Children
  • Pain
  • Sickle cell disease

ASJC Scopus subject areas

  • General Medicine


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