Cystic fibrosis care in Bulgaria is limited by funding, with low patient access to expertise. Diagnosis rates are typically low, with CF often not recognised as a distinct disease. Without diagnosis, people living with CF aren’t given the correct care, monitoring or funding to maintain their health and manage their condition. GPs are not routinely part of CF care in Bulgaria, and with only 4 specialist centres in the country, financial and logistical difficulties are an important barrier to accessing treatment.
Working with specialists from the UK’s Southampton Paediatric Cystic Fibrosis Centre, Bulgarian medical teams identified the key focus areas listed below and concluded the development of a National Patient Register should be the primary goal for future collaboration.
- Nutrition: knowledge exchange on implementing a professional approach
- Diagnosis: early screening tests and learning from experience in the UK
- Microbiology and hygiene
- Training programmes for parents: physiotherapy, diet and respiratory treatments
- Special factors for teenagers
- Training/education for adult patients
- Thematically structured meetings
A patient register has wide ranging benefits. As an easily accessed resource, it is an invaluable aid in understanding health outcomes in patients nationwide. It aids communication between health workers in different parts of the country and provides a source of important information for decisions on treatment. Perhaps most importantly it encourages regular routine assessments and record keeping. It could be a step change for the treatment of CF in Bulgaria.
Strategy planning in Bulgaria
Dr Julian Legg arranged to meet Dr Lutz Naehrlich, Director of the European Cystic Fibrosis Society Patient Registry at a CF Europe conference in Sofia, aiming to discuss next steps towards developing a register of CF patients,
Read more
