• Palliative medicine · Mar 2023

    Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study.

    • Francesca Burlo, Davide Zanon, Eva Passone, Maristella Toniutti, Giuliano Ponis, Egidio Barbi, Valentina Taucar, and Lucia De Zen.
    • Department of Medicine, Surgery, and Health Sciences, University of Trieste, Trieste, Italy.
    • Palliat Med. 2023 Mar 1; 37 (3): 384390384-390.

    BackgroundChildren with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are blended in the pharmacy's laboratory worldwide according to different rules and tailoring the patient's needs. While their use may sometimes simplify these therapies, little is known about parents' attitude about this issue.AimThis study aimed at investigating the complexity of the daily therapy management and exploring the parents' opinions about galenic compounds.DesignParents were interviewed by using a structured questionnaire.SettingChildren followed by the Pediatric Palliative Care Network in Friuli Venezia Giulia, Italy, were included from November 2021 to April 2022. Those diagnosed with malignancies were excluded, since therapies are mainly administered through a central venous catheter.ResultsThirty-four parents were interviewed. Fourteen patients took drugs orally, one via nasogastric tube (NGT), 18 via gastrostomy, and one orally + NGT. The mean number of drugs taken every day was six (2-14), in mean 10 (3-18) administrations, that overall required a mean of 44 (8-180) minutes to be delivered. Twenty-eight parents used galenic compounds, and 24 reported relevant advantages, because of a ready-to-use and safe formulation.ConclusionsThe therapy management of children with medical complexity relies on parents. Galenic compounds may improve both patients' and caregivers' quality of life, either in terms of shorter time of administration or smaller risk of errors. Therefore, their use should be encouraged worldwide, according to the different reference rules.

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