The NIHR Global Health Research Group on Patient-centred sickle cell disease management in sub-Saharan Africa (PACTS) is a research collaboration between LSTM, University of Abuja, University of Zambia, Kwame Nkrumah University of Science and Technology (KNUST), Syracuse University and Imperial College London. It is led by Professor Imelda Bates (LSTM) and Professor Obiageli Nnodu (University Abuja).
About sickle cell disease
Sickle cell disease (SCD) is a genetic disorder of red blood cells. The abnormal sickle-shaped cells become trapped in the circulation creating blockages. A complex sequence of events follows which can be associated with sudden episodes of severe, intractable pain and with chronic organ damage so later in life SCD patients can experience failure of the heart, lungs, brain, kidneys and other organs. SCD detrimentally affects growth and intellectual development which, coupled with unpredictable episodes of pain and hospitalisations, impacts on schooling, employment and mental health.
SCD has been declared a major public health priority by the WHO and the UN. Without the clinical management ‘mainstays’ (infection prevention, medicines and blood transfusions) most SCD patients die before five years of age. In high-income countries, most SCD patients can access these mainstays so they can live a good quality life past middle age.
PACTS Objectives
For SCD patients and carers
- To understand the barriers in accessing and adhering to care and preventing uptake of care
- To identify, test and evaluate a series of sustainable, locally workable solutions that overcome barriers
- Identify and uphold expectations for patient-centred care
- To use successful patient-centred solutions and evidence-based SCD care
- To capacitate healthcare providers to identify facility-specific bottlenecks constraining treatment, and test and refine strategies to overcome them
For researchers, grant managers and partner institutions
- To train researchers in implementation research and mapping and epidemiology principles and methods
- Mentor and support research teams to become competent and confident involving patient-designed interventions
- Systematically identify strengths and weaknesses in institutional research support systems, provide support and devise and implement training plans to address any weaknesses
- Create a multi-national community of SCD-focused implementation researchers and journalists in sub-Saharan Africa
PACTS team
LSTM, UK Professor Imelda Bates Dr Tara Tancred
University of Abuja, Nigeria Professor Obiageli Nnodu
University of Zambia, Zambia Dr Catherine Chunda-Liyoka
Kwame Nkrumah University of Science and Technology (KNUST), Ghana Professor Alex Osei-Akoto
Syracuse University, USA Professor Bernard Appiah
Imperial College London, UK Dr Frederic Piel