Like many rare diseases, there is no cure for BHD. However, appropriate management of symptoms – particularly kidney cancer – can vastly reduce the likelihood of early death due to the disease (Menko et al., 2009, Stamatakis et al., 2013). Therefore, providing BHD patients with clear, easy to understand information can help patients manage their condition and improve their quality of life.
Last year we wrote about how learning about health literacy helped us develop our Introductory Pamphlets for newly diagnosed patients. Whilst doing this project, we realised that some of the patient information on the website was quite technical and could be improved. Today we are pleased to launch the new patient information pages. These have been updated to include new information, and rewritten with the principles of health literacy in mind.
The new patient pages are split into ten sections: What is BHD; a Genetics overview; information about the skin, lung, kidney and other symptoms of BHD; practical considerations; the Science of BHD; FAQs; and Glossary.
What is BHD, simply provides a brief overview of BHD. The “Genetics overview” describes the genetics of BHD; suggests who should be tested for BHD, and why you should consider genetic testing; provides information about the genetic test itself and getting the results; and discusses the next steps are if you do have BHD, including information about how to find a doctor.
Previously, medical information about BHD was split into two sections: symptoms, and treatment & diagnosis. Now, this information is split into the different organs affected by BHD: skin, lung, kidney and other symptoms. For the skin, lung and kidney sections, each has its own introduction, followed by information about the symptoms, diagnosis, treatment options and differential diagnosis.
The “Practical considerations” section has remained largely the same. However, we have added three new resources to “Telling others about BHD”. The Medical Education Kit links to three important papers written by BHD experts, describing the best treatment regimens for patients (Gupta et al., 2013, Menko et al., 2009, Stamatakis et al., 2013). We recommend that patients print out copies of these papers to give to their doctors. This allows patients to educate their doctors about BHD and the best methods of treating patients. We have also written a lay summary of each paper so that patients are aware of the results and recommendations outlined in each.
To help patients tell their families about BHD, we have written a BHD Family Letter, which can be personalised to fit each patient’s circumstances. We have also reinstated the BHD Medicard, which can be folded into the size of a credit card, meaning that patients can easily carry round a handy list of their symptoms and treatments at all times.
There are three brand new sections. Firstly, we have added an FAQs section, which lists the answers to questions we are often asked about BHD. We have also added a glossary of terms, which spells out the more difficult or unfamiliar terms phonetically. And finally, we have written a brief description of the science of BHD specifically for patients. This section does not provide information that is directly relevant to patients’ health or care, but provides an insight into the underlying biology of the disease.
We hope that patients find the new pages informative and are better able to understand and manage their condition as a result. If you would like give any feedback on the new pages, you can email us at contact@BHDSyndrome.org, or fill out our online feedback form.
- Gupta N, Seyama K, & McCormack FX (2013). Pulmonary manifestations of Birt-Hogg-Dubé syndrome. Familial cancer, 12 (3), 387-96 PMID: 23715758
- Menko FH, van Steensel MA, Giraud S, Friis-Hansen L, Richard S, Ungari S, Nordenskjöld M, Hansen TV, Solly J, Maher ER, & European BHD Consortium (2009). Birt-Hogg-Dubé syndrome: diagnosis and management. The Lancet. Oncology, 10 (12), 1199-206 PMID: 19959076
- Stamatakis L, Metwalli AR, Middelton LA, & Marston Linehan W (2013). Diagnosis and management of BHD-associated kidney cancer. Familial cancer, 12 (3), 397-402 PMID: 23703644
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.