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Adherence and burden


Adherence and burden of cystic fibrosis therapy


Poor adherence to this complex therapy is the main cause of treatment failure and increased exacerbation rates. What is needed is 'educated non-compliance'


Doris Staab Director Cystic Fibrosis Centre Charité University Hospital Augustenburger Platz 1 13353 Berlin Germany


In recent years, life expectancy for patients with cystic fibrosis (CF) has markedly increased. While in the last decade of the twentieth century the proportion of adult patients reached about 25%, nowadays more than half of the patients are older than 18 years, with the oldest patients reaching the upper sixties. Responsible for this increasing survival is not a single new drug, but a more comprehensive care team in highly specialised CF centres and a very complex therapeutic regimen the patient has to carry out daily at home. These treatments include chest physiotherapy and sports, nutrition and enzymes, oral, intravenous or inhaled antibiotics, and are time- consuming and burdensome. Especially for adolescents and adults, it is a continuous challenge to integrate the therapeutic regimen into their daily life with school or work, family, friends and leisure activities. Yet, poor adherence to this complex therapy is recognised as the main cause of treatment failure and increased exacerbation rates.1


An


increasing number of papers have dealt with this topic in the past few years.2


Treatment burden 18


In general, treatment burden increases with age and disease severity. With the increase in preventive therapy, as, for instance, chest physiotherapy or inhaled antibiotics, time-consuming therapy is


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"Subjective treatment burden is perceived to be higher for inhaled therapies and chest physiotherapy than for oral medication"


also imposed on quite ‘healthy’ children and adolescents. Perceived treatment burden does not correlate to severity of disease; in contrast, more healthy patients have a busier day with education or work and social activities, so they are more compromised by a time-consuming therapy. Reported daily treatment time varies considerably between patients, with a mean time of approximately 100 minutes per day. Subjective treatment burden is perceived to be higher for inhaled therapies and chest


physiotherapy than for oral medication. It


increases with the administration times per day and the duration of the single application. All medications, which have to be taken more than twice daily, have a significant impact on the patient’s daily life.3


Adherence


Adherence describes the amount to which a patient behaves according to the healthcare recommendations. Non- adherence might vary a great deal in a CF patient: while taking oral medications without problems, a patient might be


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