Your notes were forwarded to me at the PCD Foundation site. I apologize for having to reply in a separate thread, but I don’t post often and could not figure out how to reply!!
There is a lot of controversy surrounding CT scanning right now because of radiation exposure. CT scans are being used more and more often, sometimes for frivolous reasons or when other diagnostic techniques are available. It is this use of CT scans that is creating the controversy, not legitimate use, like what is usually seen with PCD. Because CTs expose patients to more radiation than regular xrays, it is important they be used with some discretion, no matter why they are being done.
That said, CT scan (high resolution or HRCT) is the only way to assess early bronchiectasis or early changes leading to bronchiectasis and it is the best way to assess disease progression. Bronchiectasis does show up on xrays, but only once it is significantly advanced and it is too late to do much to prevent further spread. Since there is no cure for PCD, treatment relies on slowing the progression of disease and the only way to assess if treatment is working may be through periodic CT scans–lung function tests and xrays have both been shown to be less effective than CT scanning. CT scans are also useful in PCD to determine situs issues. It is not at all uncommon for PCD-associated situs problems to be missed with other diagnostic tools. Congenital heart defects and minor abdominal situs problems can be visualized via CT and it is important to know about these issues because the presence of situs problems (both situs inversus and another form called situs ambiguus) put the patient at increased risk for other problems, like cardiac disease.
Getting a baseline HRCT is an entirely appropriate thing for a child with PCD. However, unless there are good reasons to do it like deterioration in lung function, CTs probably don’t have to be done every year. Like every medical procedure, there are risks involved with doing CTs and there are risks involved in not doing CTs. Points in favor of CTs include helping to direct care, assessing individual disease progression and identifying situs issues that may indicate other problems–thus allowing those problems to be treated before they become critical, as in the case of congenital heart disease. Cons are the risk of radiation exposure–the consequences of which are not fully understood. From an anecdotal perspective, we have a robust “mature” adult patient group who have been exposed to CTs, xrays, you name it, for years and years with no increased incidence of cancer or radiation-related illness in the group. Whether this is a just luck or a true indication of negligible risk is not clear, but it is still somewhat reassuring. It’s not an easy decision and there are no black and white answers, but the vast majority of patients with PCD have had at least one and usually more than one HRCT in their lifetime.