Research suggests that approximately 11 million people in Pakistan are βeta-thalassaemia carriers – that’s about 5% of the Pakistani population. There are more than 40,000 people with βeta-thalassaemia major registered with different blood-transfusion centres in Pakistan, and every year 5,000 to 9,000 children are also born with the condition. Therefore, the prevention of βeta-thalassaemia major is a priority in Pakistan.
The Punjab Thalassaemia Prevention Project (PTPP) is funded by the Government of Punjab to provide thalassaemia screening and prevention services in the Punjab province. The PTPP services include carriers screening, prenatal diagnosis, genetic counselling and awareness. For carrier screening, the PTPP field officers contact relatives of children with βeta-thalassaemia major to raise awareness of thalassaemia carrier testing.
The decision support intervention for relatives (DeSIRe) was developed by the research partners using the following:
- International Patient Decision Aid Standards guideline (http://www.ipdas.ohri.ca) and the Ottawa Decision Support Framework (https://decisionaid.ohri.ca/odsf.html); and
- support of an expert panel, which included parents and relatives of people with βeta-thalassaemia major, PTPP field officers, and various healthcare professionals.
The DeSIRe was developed for use by the PTPP field officers in face-to-face meetings to support relatives to make informed decisions about thalassaemia carrier testing. For more information about how the DeSIRe was developed, and evaluated by relatives and field officers, please see the published articles in ‘Dissemination’.