A particular interest in recent years has been in Primary Ciliary Dyskinesia.
Primary Ciliary Dyskinesia. Primary Ciliary Dyskinesia (PCD) is a congenital condition, previously known as Kartagener's Syndrome or Siewert's (Ziwert's) Syndrome or Immotile Cilia Syndrome, in which the cilia do not beat or beat ineffectually. The result is a cluster of symptoms including bronchiectasis and chronic sinusitis, there is sometimes reduced fertility, and, in about half of the cases, there is situs inversus, the left-right reversal of body organs, most obviously with the heart being on the right side of the chest.We have published a series of papers on PCD including a study of the respiratory and other problems reported by patients, the effects of stigma and personality on symptoms, and the handedness and lateralisation of individuals with PCD.
The questionnaire that was used in the PCD studies is available here, in the Adult or Child versions (which differ mainly in whether they ask about smoking).
Information about the scoring of the various parts of the questionnaire can be found in the research papers:
- McManus, I. C., Mitchison, H. M., Chung, E. M. K., Stubbings, G. F., & Martin, N. (2003). Primary Ciliary Dyskinesia (Siewert's /Kartagener's Syndrome): Respiratory symptoms and psycho-social impact. BMC Pulmonary Medicine, 3:4.
- McManus, I. C., Martin, N., Stubbings, G. F., Chung, E. M. K., & Mitchison, H. M. (2004). Handedness and situs inversus in primary ciliary dyskinesia. Proceedings of the Royal Society of London, Series B, 271, 2579-2582.
- McManus, I. C., Stubbings, G. F., & Martin, N. (2006). Stigmatisation, physical illness and mental health in primary ciliary dyskinesia. Journal of Health Psychology, 11, 467-482.
- Whalley, S. & McManus, I. C. (2006). Living with primary ciliary dyskinesia: A prospective qualitative study of knowledge sharing, symptom concealment, embarrassment, mistrust, and stigma. BMC Pulmonary Medicine, 6:25.
Please note that I am unable to provide medical or psychological advice to patients with Primary Ciliary Dyskinesia. Those wishing to find out more about the condition should consult either their own doctor, or the website of the Primary Ciliary Dyskinesia Family Support Group (whom I must also thank for their help with the studies described above). For technical details of diagnosis and other biomedical aspects of PCD, including beautiful videos of cilia beating, see the webpage of the Southampton Primary Ciliary Dyskinesia Group.