THE POTENTIAL IMPACT OF CHELATION THERAPY (CT) ON THE QUALITY OF LIFE (QOL) OF PATIENTS WITH IRON OVERLOAD (IO)
Author(s)
Abetz L1, Jones P2, Baladi JF21Mapi Values, Macclesfield, Cheshire, United Kingdom; 2 Novartis Pharmaceutical Corporation, East Hanover, PA, USA
OBJECTIVES: Repeated blood transfusions can result in IO and lead to life-threatening complications in patients with sickle cell disease (SCD), thallasaemia (TLA) or myelodysplastic syndrome (MDS). The most common IO CT, Desferal (DFO), requires infusions of 8-12 hours, 5-7 days per week, potentially limiting QoL and inhibiting adherence. METHODS: A literature review (539 abstracts; 130 articles), analysis of four IO patient transcripts (one MDS, one SCDA, two TLA) and interviews with three IO experts were conducted to assess the potential impact of CT on patients' lives. RESULTS: Results suggested the significant negative impact of CT with DFO on patient QoL, particularly social life, self-image, intimate relationships, emotional well-being, pain and sleep, though very few published studies (15) measured this impact with validated QoL instruments. No IO or CT -specific QoL instruments were found. Published articles and patient/clinician input suggested a need for easier, efficacious and safe oral IO treatments, given the impact of current CT on QoL inhibits adherence. CONCLUSION: Limited empirical studies assessed the impact of CT or IO on QoL, though all reviewed articles stated that CT's QoL impact is significant and would improve with oral therapy. However, the impacted QoL domains may differ by age, condition, and how long CT has been used. It is recommended to continue both the qualitative and the quantitative study of QoL in chelated patients in patients with MDS, SCD, and TLA using validated instruments in order to further our understanding of the issues and improve patient's quality of life.
Conference/Value in Health Info
2005-11, ISPOR Europe 2005, Florence, Italy
Value in Health, Vol. 8, No.6 (November/December 2005)
Code
PHM8
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes, Stated Preference & Patient Satisfaction
Disease
Systemic Disorders/Conditions