Parents and carers of patients who had liver transplants: opinions and experiences of medication issues

Purpose Birmingham Children’s Hospital in the UK provides family centred care for post-transplant medication (PTM) management. Nevertheless, PTM is often considered a burden for patients, and can be difficult to manage. This study was designed to identify the main medication issues encountered by children and their parents in order to find suitable means to improve their care management.

Method Anonymised multifactorial, cross-sectional, single-site survey. Parents of children transplanted from January 2011 were recruited following two strategies: (1) self-completion of questionnaire at the outpatient department over a period of 4 weeks during May 2013, (2) telephone completion by random selection of 30 parents.

Results were analysed using MS Excel 2010. Results 37 parents were recruited. Medication supply problems concerned 12 (32.4%) parents. 30 (81.1%) parents declared having almost run out of medicines, but no children missed an immunosuppressant dose. 9 (24.3%) parents experienced medication-administration problems, and 14 (37.8%) blood test issues. 14 (37.8%) parents felt they had an inadequate knowledge of side effects. However, 30 (81.1%) parents thought that their training was excellent or very good, and 36 (97.5%) that the written information provided was comprehensible and accurate. Among proposed improvements, parents’ preferences were for an online learning tool (OLT), an explanatory comic book (CB) for children and pharmaceutical consultations (PC).

Conclusions To our knowledge, this study is the most comprehensive published audit concerning the care process of PTM. Although parents seemed particularly satisfied by the current training and written information, many experienced issues linked to PTM management. Based on parents’ preferences, a working party is currently considering service development options (OLT, CB, PC).