Adherence and burden


unable to carry out his inhalations as prescribed. Adherence might also vary in certain life times, especially adolescence, when daily confrontation with the disease is avoided. One of the big problems in adherence research is the question of how to measure adherence. There are impressive differences in reported adherence rates across studies, which obviously are increased by inconsistent measures that are used. These include self-reports, proxy reports (by caregivers), diaries, electronic monitoring and pharmacy prescription data. All of them have pro’s and con’s. Electronic monitoring is thought to be the gold standard, while self-reporting seems to overestimate adherence significantly. The use of pharmacy refill data or prescription data depends very much on the local health system and is not everywhere applicable. But even these ‘objective’ data do not give enough evidence for the correct use of the prescribed medication.


Reported barriers to treatment adherence


In addition to measure adherence, it is even more important to look for barriers to the daily treatment regimen.4


Across all


studies, reported barriers to adherence are similar (Table 1). ‘No time’ seems to be one of the major reasons, which is no wonder, considering the complexity of the prescribed therapy. Nonetheless, it is important to consider this when developing new therapies for CF. Absence of perceived benefits is another central point. Explaining the preventive character of the treatment to the parent and the patient is an important task for the CF healthcare team. Gender differences are now reported in various studies, with girls being less adherent to therapy than boys.5 Low adherence in girls correlates with a more rapid decline in lung function than in boys, suggesting that there are other factors, such as the more active and sporty life style of boys, that might at least partly compensate for low adherence.


How to facilitate adherence? As most of the treatments in CF are initiated to achieve prevention of exacerbation and a stable health status, a direct perceivable benefit is missing. To enable the patient (and, in children, the parents) to take responsibility for his own course of disease, a comprehensive patient education is needed. As we know from other patient education programs,


Table 1: Barriers to treatment adherence • Lack of time


– Frequency and length of treatment – Interfering with social demands


– Incompatibility of education/work with therapy • Forgetting


• Missing confidence in benefit – Treatments without directly perceived effects are harder to adhere with


• Fatigue – To be too tired / exhausted to perform chest physiotherapy, sports or inhalation


• Embarrassment


– Stigma of performing therapy (even taking pills) in public – Not to feel like a sick person


"The patient has to be prepared to act as a partner in the healthcare system in order to be ready for shared decision-making"


information alone is not sufficient. The patient has to be prepared to act as a partner in the healthcare system in order to be ready for shared decision-making. Patients need to be encouraged to use social resources, accept help and communicate openly on treatment barriers. Nobody is able to be 100% compliant with long-term treatments. What we need to achieve is ‘educated non compliance’, so the patient is capable of deciding (together with the CF team) what is important for him and what could be skipped for a certain time. When non-adherence is identified as a prominent clinical problem in a single patient, this patient should be evaluated carefully for barriers and lack of social support and individual help should be designed in order to support him. Future research for new therapies should take the non-adherence problem into account and aim for treatments that are not more


than twice daily and that are easy to apply. l


References 1. Eakin MS et al. Longitudinal association between medication adherence and lung health with people with cystic fibrosis. J Cyst Fibros 2011;10:258–64.


2. Abbott J, Havermans T, Hart A. Adherence to the medical regimen: clinical implications of new findings. Curr Opin Pulm Med 2009;15:597–603.


3. Sawicki GS, Sellers DE, Robinson WM. High treatment burden in adults with cystic fibrosis: challenges to disease self management. J Cyst Fibros 2009;8:91–6.


4. George M et al. Perceptions and barriers with facilitators: self-management decisions by older adolescents and adults with CF. J Cyst Fibros 2010;9:425–32.


5. Patterson JM et al. Gender differences in treatment adherence among youths with cystic fibrosis: Development of a new questionnaire. J Cyst Fibros 2008;7:154–64.


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