Mechanisms to support compliance to iron chelation
Research type
Research Study
Full title
An exploration of potential mechanisms to support compliance to iron chelation regimes in adults with haemoglobinopathies in North and East London.
IRAS ID
124299
Contact name
Karen Madgwick
Contact email
Sponsor organisation
North Middlesex University Hospital NHS Trust
Research summary
Haemoglobinopathies are a range of inherited disorders resulting from mutations of the genes that determine the structure of haemoglobin (the molecule in red cells that carriers oxygen round the body). North Middlesex University Hospital NHS Trust (NMUH) is a designated specialist centre for the treatment of haemoglobinopathies. A small, but significant, number of these patients require regular, monthly, long term or life long, red cell transfusions. A side effect of these transfusions is iron overload. Excess iron stored in the heart or liver can cause organ failure and result in death. Treatments (chelation) to remove iron are arduous and do nothing immediate to improve the patients’ quality of life. Standards (Yardumian 2008 and Dick 2010) would suggest that compliance to regimes are often as much about the way the care is delivered as the technical aspects of the treatment it self. It is known the patients (approximately 50) on such treatments at NMUH have variable adherences to iron chelation.
It is proposed to do a qualitative study using in-dept, semi structured interviews to identify strategies to improve adherence to iron chelation regimes in adult patients with haemoglobinopathies. The research objectives are:
• To identify the level, range and types of iron chelation treatments offered to patients in North and East London.
• To identify adult patients that have successful and unsuccessful adherence to treatment guided by their chelation regime, ferritin levels and level of organ iron loading.
• To explore the patients experiences with chelation regimes using semi structured interviews.
• Using the data obtained from the interviews to identify possible reasons for successful and unsuccessful adherence.
• To suggest strategies that can be introduced to improve adherence to iron chelation treatments.REC name
London - Surrey Borders Research Ethics Committee
REC reference
13/LO/1478
Date of REC Opinion
29 Nov 2013
REC opinion
Further Information Favourable Opinion