Background Cystic fibrosis (CF) is a life-threatening, autosomal recessive disease, caused by a mutation in the CFTR gene. It affects over 10,800 people in the UK. There is currently no cure for CF with treatment aimed at controlling infections and preventing complications. Paucity of research exists in assessing adherence of long-term medications in paediatric CF patients, in the UK. This is a continuation of a small proof of concept study established in 2015 at Southampton Children’s Hospital.
Aim To calculate the medication adherence of Creon, d-nase alfa and vitamins over a 12- month study period. To gain a better insight into impact of CF treatment in patient and their family’s daily life.
Method This study was approved by the local research ethics committee. A mixed- method approach was taken. Medicines possession ratio (MPR) was calculated using SPSS software from data collected via hospital, homecare and community services, this was used to estimate medication adherence. Semi-structured telephone interviews were conducted with patients’ parents. Thematic analysis was used to study the qualitative data.
Results Twenty nine parents/patients were consented to take part in the study. Fifteen of these had to be excluded from the MPR calculation due to lack of prescription information from primary care; n=14, mean age 8.4 years (1–14 y), males/female 8/6. Calculated MPR: Creon 72.44% (36.4–100), d-nase 85.27% (57.4–100), vitamins 86.51% (41–100) The themes identified from the qualitative interviews (n=9, all were parents) were time, routine, relationships and psychological impact.
Conclusion Having a set daily routine was felt to be important; adherence was described as more difficult on ‘non- typical days’. Many parents prepared the medication for their children (at all ages), but left it for them to take when they were older; they also helped afterwards by washing nebulisers for example. Finding the time for prolonged time-consuming treatment was described as tricky when trying to balance it with other daily activities. The relationships between parents and their children, especially as the children reached secondary school age; between parents and their healthcare team (in both hospital and community) were described as important factors to aid adherence. CF treatment was described as a ‘chore’, with no break or respite. Adherence, estimated via MPR was lower for oral treatments rather than inhaled, but higher overall than has been shown in other studies.1 Obtaining data from primary care was problematic; this will need to be overcome for further studies. The complex nature of medicines prescribing for this patient cohort led to difficulties with data collection, the loss of 15 patients due to incomplete data from primary care highlights this problem. The increased availability of shared electronic prescription data will make this type of study much more feasible in the future. The overall MPR was higher than expected, but this might be related to the role of parents, we would like to continue this work with more of our adolescent patients and those who have recently transitioned to adult services.
Modi AC, Lim CS, Yu N, et al. A multi-method assessment of treatment adherence for children with cystic fibrosis. J Cyst Fibros 2006;5:177–185.
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