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Published on: March 14, 2017
Top Ten Tips Palliative Care Clinicians Should Know About Sickle Cell Disease
Ashley Allen1, Eberechi Nwogu-Onyemkpa2, C Patrick Carroll3
1Department of Medicine, Palliative Care, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Sickle cell disease (SCD) is a serious genetic disorder impacting millions globally. Palliative care (PC) can improve quality of life for SCD patients facing complex symptoms and healthcare challenges.
Area of Science:
- Hematology
- Genetics
- Palliative Care
Background:
- Sickle cell disease (SCD) is a prevalent, life-limiting genetic disorder with a substantial symptom burden and reduced quality of life.
- Despite advances in disease-modifying and curative therapies, challenges related to access and tradeoffs persist.
- Current pain management often relies on opioids for acute pain, inadequately addressing chronic pain, and patients face significant psychosocial issues, including healthcare system biases.
Purpose of the Study:
- To provide a comprehensive overview of sickle cell disease (SCD) tailored for palliative care (PC) clinicians.
- To empower PC clinicians with knowledge to better manage the complex needs of individuals with SCD.
- To highlight the importance of PC in addressing the multifaceted challenges of SCD.
Main Methods:
- This article was developed by a multidisciplinary group of clinicians.
- It synthesizes current knowledge on SCD pathophysiology, clinical manifestations, and psychosocial aspects.
- The focus is on empowering PC providers through education.
Main Results:
- Palliative care involvement in SCD has historically been limited.
- Individuals with SCD experience a high symptom burden, including chronic pain and psychosocial distress.
- Advance care planning is crucial due to unpredictable complications and comorbidities in aging individuals with SCD.
Conclusions:
- Palliative care has a vital role in improving the quality of life for individuals with SCD.
- Empowering PC clinicians with SCD-specific knowledge is essential for comprehensive patient care.
- Addressing the complex medical, emotional, and social needs of SCD patients requires a multidisciplinary approach.
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