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Pediatric Oncall Journal

Assessing Adherence to Treatment and the Burden of Care in Pediatric Cystic Fibrosis Patients.
Assessing Adherence to Treatment and the Burden of Care in Pediatric Cystic Fibrosis Patients.
Presented in Manchester University Medics Paediatrics Society (MUMPS) Conference, October 2015, UK
R Collins, N Rao.
Paediatric Cystic Fibrosis Centre, University Hospital of South Manchester..
Adherence to treatment in Cystic Fibrosis (CF) is an integral challenge to the management of CF. The multisystem nature of CF demands commitment to complex daily regimens which pose a significant threat to patient adherence; this is a major concern since poor treatment adherence has been associated with increased morbidity.
The primary aim of this study is to measure patient adherence to CF treatment using subjective (self-reported adherence) and objective (GP prescription issue data) methods. To determine what proportion of patients are ‘adherent’ to their CF treatment we used an adherence rate of ≥80% as ‘adherent’. This value is based on consensus. The second aim of this study is to assess the burden care in CF with regards to the quantity of medications taken per patient and the time burden of these therapies.
Twenty two patients (≤18 years old) were recruited for a multi-method assessment of adherence. To measure adherence objectively, repeat prescription orders were compared with each patient’s expected medication consumption retrospectively over a specified three-month period. In addition, 16 patients or their parents completed a questionnaire which assessed self-reported adherence and the burden of care in CF.
The mean objective adherence rate was low at 61.8% (27.7-94.6%). The mean subjective adherence rate was 91.6% (74.7-100.0%). Nutritional supplements followed by respiratory medications were associated with the poorest adherence. Using objective adherence rates, only 4/22 met the audit standard of ≥80% adherence. Assessment of the
burden of care in CF found that the median number of medications per patient was nine and the mean time spent on medications was 113 minutes per day.
This study demonstrated the extent of the problem of adherence and burden of care in a paediatric CF cohort and highlights the need for patient-specific interventions to address the factors contributing to non-adherence.

Cite this article as:
Collins R, Rao N. Assessing Adherence to Treatment and the Burden of Care in Pediatric Cystic Fibrosis Patients.. Pediatr Oncall J. 2016;13. doi: 10.7199/ped.oncall.2016.4S
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