We want to hear from you!
We have launched a survey through the European Lung Foundation to gather views from people affected by childhood bronchiectasis. We want to know which outcomes are the most important for future clinical research in childhood bronchiectasis.
We would like to hear from:
1. parents of children with bronchiectasis, and
2. adults who were diagnosed with bronchiectasis as children.
The survey asks you to rate how important a range of outcome measures (endpoints) are to you. It will only take 10 minutes to complete. Your views will help make future research studies more relevant for people with bronchiectasis.
The survey is available in English, German, Italian, Russian, Turkish and Ukrainian. Select your language from the drop-down box on the survey page.
Take part in the survey: https://www.surveymonkey.co.uk/r/BE
Frequently Asked Questions
What is bronchiectasis?
Bronchiectasis is a chronic lung condition characterised by persistent or repeated episodes of either a ‘wet or moist sounding’ cough, or a cough which produces sputum or phlegm. These cough symptoms signal the presence of sputum, infection and inflammation deep within the lungs, damaging and stretching (dilating) the walls of the bronchi (breathing tubes within the lungs). If untreated, bronchiectasis will eventually lead to permanent poor health and shortness of breath. Representative ‘medical cases’ are available free on-line.
When to suspect your child has bronchiectasis?
Bronchiectasis should be suspected if your child has a wet or productive cough that occurs every day for more than 4-weeks and does not disappear completely with antibiotics. Bronchiectasis should also be suspected if your child has repeated episodes of wet or productive cough of more than 4-weeks duration, which only resolve once antibiotics are prescribed. While cough is the main symptom, sometimes children can also have other symptoms such as repeated episodes of pneumonia, coughing up blood, and shortness of breath with exercise. Your doctor may also find certain things when they examine your child, such as a change in the shape of the nails or chest crackles when they listen to your child’s chest. However, very often, your doctor may not hear anything abnormal in your child’s chest. This does not mean your child does need to be tested for bronchiectasis if s/he has a chronic wet cough.
How is it diagnosed?
The diagnosis of bronchiectasis in children with persistent or repeated episodes of wet or productive cough is confirmed by a chest CT scan. This is a special type of x-ray, which detects bronchial wall damage (dilatation) within the lungs. A young child may require an anaesthetic when undertaking a chest CT scan. In addition, your doctor will take a detailed medical history and clinical examination. Questions will be asked about respiratory symptoms, duration of infections, and antibiotics prescribed.
What other tests should be done?
If your child has bronchiectasis, a panel of tests will be done to discover if it is caused by certain diseases that need additional treatment. These tests include a blood test, a sweat test and, if possible, in older children a lung function test. Also, in some centres, a procedure called bronchoscopy is undertaken when sputum cannot be collected and/or to ensure no unsuspected foreign body is present in the lungs.
What causes bronchiectasis?
Although the cause of bronchiectasis is often unknown, it can result from low immunity, recurrent chest infections, swallowing difficulties leading aspiration (where food or stomach contents spill into the lungs), inherited disorders such as cystic fibrosis or primary ciliary dyskinesia, and structural abnormalities of the lungs. Your doctor will order a panel of tests to ensure there is no known underlying cause of your child’s bronchiectasis, which may require additional treatment.
What are the different types of available treatment?
There are several treatments to attain and then maintain the best lung health for your child. The standard treatment includes regular chest physiotherapy for clearing the airways of mucus and secretions (sputum). Chest physiotherapy is undertaken to improve airway clearance i.e. to get the mucus moving out of the lungs. The type of chest physiotherapy is age-dependent. For example, chest percussion for the younger child, and a mask type treatment (PEP) and exercise programs in older children. A direct link to the types of physio and equipment used is available on-line.
In addition, antibiotics are given when your child has a worsening of their cough, which may include an increase and change in the colour of their sputum. This is called an exacerbation, ‘flare-up’ or an ‘attack’. Chest physiotherapy is increased to improve airway clearance during the flare-up i.e. to get the mucus moving out of the lungs. The type of chest physiotherapy is age-dependent. For example, chest percussion for the younger child, and a mask type treatment (PEP) and exercise programs in older children.
When these flare-ups are common (eg. three or more times in a year), long-term courses of antibiotics for at least 6-months duration may be used. Your doctor will help make this decision with you by following expert guidelines to determine if your child will benefit from a course of long-term antibiotics. More information on this is available on-line.
In selected children, other treatments may be used. For example, if an underling cause of your child’s bronchiectasis is identified, such as cystic fibrosis, primary ciliary dyskinesia or an immune deficiency, additional treatments and specialist involvement may be needed.
Why airway clearance is so important?
Clearing the airways by chest physiotherapy and exercising, helps move the sputum, prevents blockage of the bronchial (breathing) tubes and prevents infection in the airways of the lungs.
How would I know when my child is having a flare-up or an attack?
Children with bronchiectasis have flare-ups from time-to-time. Each child may have their own unique pattern of flare ups. Most have more cough (more intense, more often or prolonged) or increase in sputum volume or a change of colour in their sputum (eg. from white to yellow or green). Some children may lose their appetite, have a change in their mood, become more tired, have a fever or become short of breath. Parents should always trust their judgement – they are usually better than health care professionals in detecting early signs of trouble.
Why children with bronchiectasis may be hospitalised?
Hospitalisation is recommended if your child’s cough is still present (usually after 4-weeks), despite increasing frequency of chest physiotherapy and taking oral antibiotics. Some bacteria grown from your child’s sputum may also need treatment with intravenous antibiotics in hospital. In addition to antibiotics, while in hospital your child will receive treatment from respiratory physiotherapists expert in the care of children and young people.
What else can be done to keep your child well?
The key components of maintaining healthy lungs are (a) regular exercise, (b) a healthy balanced diet,
(c) staying away from cigarette and vape smoke, and other air pollutants, and (d) ensure vaccinations are up to date.
What should I do when a flare-up occurs?
Your doctor should have given you a unique treatment plan for your child. The plan usually consists of starting antibiotics for at least 2-weeks and increasing how often your child does chest physiotherapy. When the flare-up is severe, sometimes your child may require hospitalisation.
Can I prevent bronchiectasis from getting worse?
Yes, for most children. By following your child’s treatment plan, even when you think your child seems well. Also, stay away from cigarette and vape smoke, other air pollutants, and ensure vaccinations are up to date, and eat a healthy diet.
Where can I find more information?
Speak to your specialist doctor, respiratory nurse or physiotherapist. There are also several websites, including those listed below. Ensure that the information you are looking at on the web is from a reputable organisation. Also, many aspects of bronchiectasis in adults are quite different from those in children, so be careful when looking at sites that only talk about bronchiectasis in adults.
Sites you may find useful are:
Is bronchiectasis passed on through your genes?
In most children, bronchiectasis is not passed on through genes. In some children, bronchiectasis is caused by a related genetic condition and in these children, the genetic condition can be inherited. Your doctor will explain this to you if this is the case in your child.
Is bronchiectasis reversible?
Yes. In children, unlike adults, bronchiectasis can be reversed if diagnosed early and managed well. However, this may not be possible if bronchiectasis is severe, and the bronchi are already severely damaged.
Will targeted treatment vary with age?
While the principles of treatment are the same, the treatment types change with age. This includes the type and/or frequency of physiotherapy, the type of antibiotics and how they might be used.
Will my child’s condition change as they get older?
Yes, when bronchiectasis is well managed, it can improve and thus change as your child gets older. Often parents will notice that the number of flare-ups reduce in frequency. However, it is still important to have a Bronchiectasis Action Management Plan (BAMP), and to maintain good lung health.
Can my child still attend mainstream school?
Definitely. For most children, they should continue all normal activities, like any other child their age. They should be encouraged to participate in all activities. Your child’s teacher should be aware that your child has been diagnosed with bronchiectasis. Your child may at times cough with exercise, but this does not mean they should be excluded from any activities and that they are infectious to others. Part of the management plan may include taking a bronchodilator inhaler (just like some children with asthma) prior to physical activity.
In a few children when another condition related to bronchiectasis is present, such as a heart condition, they may have restrictions placed upon their exercise activities. Talk to your specialist about what activities they should undertake.
What vaccinations does my child require?
Your child should receive all the usual scheduled vaccines for your child’s age, including national recommendations for Covid19 vaccines. In addition, they should receive an additional pneumococcal vaccine according to national immunisation guidelines, and each year the influenza vaccine.
Does my child need extra supplements?
No, just a normal healthy balanced diet.
Once diagnosed, how often should my child be seen at the hospital and by a physiotherapist?
Initially you will be followed up within the first couple of months after diagnosis to ensure your child is responding to treatment and for ongoing education on airway clearance (chest physiotherapy) techniques. For most children, they should then see the lung specialist team at least every 6-months.
Where can I find some case studies of children with bronchiectasis?
Talk to your physiotherapist and respiratory nurse. The bronchiectasis toolbox provides a good online resource.
Where can I find support from other parents of children with bronchiectasis?
Most countries have a Lung Foundation. You can always look for your country’s website. However, be aware that bronchiectasis in adults can differ from that in children. Some links are provided below: