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This work has been presented in part at the 47th American Society of Hematology (ASH) Annual Meeting, Atlanta, GA, December 2005, and at the 28th Annual Meeting of the National Sickle Cell Disease Program, Cincinnati, OH, April 2005.
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Research Article
Therapy preference and decision-making among patients with severe sickle cell anemia and their families†
Article first published online: 26 MAY 2006
DOI: 10.1002/pbc.20903
Copyright © 2006 Wiley-Liss, Inc.
Additional Information
How to Cite
Hankins, J., Hinds, P., Day, S., Carroll, Y., Li, C.-S., Garvie, P. and Wang, W. (2007), Therapy preference and decision-making among patients with severe sickle cell anemia and their families. Pediatr. Blood Cancer, 48: 705–710. doi: 10.1002/pbc.20903
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Publication History
- Issue published online: 19 APR 2007
- Article first published online: 26 MAY 2006
- Manuscript Accepted: 18 APR 2006
- Manuscript Received: 23 FEB 2006
Funded by
- American Lebanese Syrian Associated Charities
- Abstract
- Article
- References
- Cited By
Keywords:
- decision-making;
- quality of life;
- sickle cell anemia;
- sickle cell disease
Abstract
Background
Patients with severe sickle cell anemia (SCA) may benefit from therapeutic intervention with hydroxyurea (HU), chronic red cell transfusion (CT), or stem cell transplantation (SCT). Determination of best treatment is complicated by the tradeoff between each treatment's risks and benefits and the lack of data comparing them to determine efficacy. We explored factors that influenced making decisions regarding interventions and examined the relations between treatment preference and health-related quality of life (HRQOL).
Methods
Children with severe SCA and their parents received brochures describing each treatment, discussed risk/benefits with a nurse-educator, and answered questions regarding HRQOL and the factors influencing treatment preference. Severe SCA was defined as ≥3 pain events requiring ER visits or hospitalizations within 12 months, ≥2 acute chest syndrome (ACS) events within 24 months, or a combination of the two.
Results
Thirty parents and 7 patients participated. HU was preferred by 21 parents and 4 children, CT by 5 parents and 1 child, and SCT by 3 parents and 1 child. One parent was undecided and one child preferred no treatment. Interviewees were most influenced by perceived efficacy and safety, but no factors differed significantly among treatment preference groups. HRQOL median scores (0–100 scale) for parents (56; range, 28–91) and children (61; range, 31–96) did not differ significantly among treatment preference groups.
Conclusions
Patients with severe SCA and their parents can identify their treatment preferences. Improved understanding of their preferences and decision-making process will aid in the design of future clinical trials and in medical decision-making. Pediatr Blood Cancer 2007;48:705–710. © 2006 Wiley-Liss, Inc.