Department of Medicine, Surgery, and Health Sciences, University of Trieste, Trieste, Italy.
Pharmacy and Clinical Pharmacology Department, Institute for Maternal and Child Health - IRCCS Burlo Garofolo, Trieste, Italy.
Palliat Med. 2023 Mar;37(3):384-390. doi: 10.1177/02692163231151733. Epub 2023 Feb 2.
Children 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.
This study aimed at investigating the complexity of the daily therapy management and exploring the parents' opinions about galenic compounds.
Parents were interviewed by using a structured questionnaire.
Children 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.
Thirty-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.
The 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.
患有复杂疾病的儿童需要复杂的帮助，这极大地影响了照顾者的生活质量。他们经常需要服用多种药物，因此存在相关的用药错误或不遵医嘱风险。在全球范围内，药剂师会根据不同的规则在实验室中混合（或配制）药物，以满足患者的需求。虽然这些药物的使用有时可以简化这些治疗方法，但人们对家长对此问题的态度知之甚少。
本研究旨在调查日常治疗管理的复杂性，并探讨家长对制剂的看法。
家长通过结构化问卷接受采访。
意大利弗留利-威尼斯朱利亚地区的儿科姑息治疗网络于 2021 年 11 月至 2022 年 4 月期间纳入研究对象。由于治疗主要通过中心静脉导管给药，因此排除了诊断为恶性肿瘤的患儿。
共采访了 34 位家长。14 名患者口服药物，1 名经鼻胃管（NGT），18 名经胃造口管，1 名口服+NGT。每天服用的药物平均数量为 6 种（2-14 种），平均 10 次（3-18 次）给药，总体需要 44 分钟（8-180 分钟）完成。28 位家长使用了制剂，24 位家长报告了相关的优势，因为制剂是即用型且安全的配方。
患有复杂疾病的儿童的治疗管理依赖于家长。制剂可以提高患者和照顾者的生活质量，无论是在减少给药时间还是降低用药错误风险方面。因此，应根据不同的参考规则，在全球范围内鼓励使用制剂。
