Department of Women's and Children's Health, University of Padua, Padua, Italy.
Hospital Pharmacy Department, Azienda Ospedale - Università Padova, Padua, Italy.
Ital J Pediatr. 2024 Nov 6;50(1):238. doi: 10.1186/s13052-024-01809-4.
In pediatric palliative care, the main caregiver is primarily responsible for managing pharmaceutical therapies. Few data are available regarding the influence of this burden on quality of life in terms of time, concerns as well as a considerable risk of administration errors and adverse effects. This study aims to investigate how caregivers prepared and administrated medication, including errors and associated expectations, to identify improvement interventions.
Between October 2022 and March 2023, a descriptive single-center survey study was carried out in the tertiary care pediatric palliative center of the Padova University Hospital. Participants were the caregivers of the patients followed by our center up to 23 years old, receiving at least one drug daily and who cannot self-administer their therapy. The questionnaire consisted of 18 multiple-choice and semi-closed questions, grouped into 4 main topics: therapy preparation, therapy administration, administration errors and therapy assessment.
A total of 100 caregivers responded to the survey. Mothers represented the main caregiver (91%). The prevalence of polypharmacy was 67% across the patients. 52% of caregivers handled prescriptions at least three times per day and for 32% it took to prepare them more than 5 min each time. Only 59% reported to have been trained for preparing and administrating drugs. 14% reported having made at least a drug administration error due to the tiredness or the complexity of therapeutic regimens in the preceding three months. Nearly one caregiver out of three felt their child was using too many drugs. 73% positively welcomed the possibility of having clinical pharmacist-led counseling.
Many caregivers of pediatric palliative care patients frequently have trouble planning, preparing and delivering pharmacological therapy to their children. Attempting to simplify medication regimens, choosing formulations that are simpler to administer and measure, investing in improved caregiver training, talking about therapies with carers, and involving clinical pharmacists to clarify their doubts could be all potential strategies to improve this condition and reduce their burden.
在儿科姑息治疗中，主要照顾者主要负责管理药物治疗。关于这种负担对时间、关注以及管理错误和不良反应风险的生活质量的影响，数据很少。本研究旨在调查照顾者如何准备和管理药物，包括错误和相关期望，以确定改进干预措施。
2022 年 10 月至 2023 年 3 月，在帕多瓦大学医院的三级儿童姑息治疗中心进行了一项描述性单中心调查研究。参与者为我们中心随访的年龄在 23 岁以下、每天至少服用一种药物且无法自行治疗的患者的照顾者。问卷由 18 个多项选择和半封闭问题组成，分为 4 个主要主题：治疗准备、治疗管理、管理错误和治疗评估。
共有 100 名照顾者对调查做出了回应。母亲是主要照顾者（91%）。患者中 67%存在多种药物治疗。52%的照顾者每天至少处理 3 次处方，每次准备时间超过 5 分钟。只有 59%的人报告接受过准备和管理药物的培训。在过去三个月中，14%的人因治疗方案的疲劳或复杂性而至少犯了一次药物管理错误。近三分之一的照顾者认为他们的孩子使用的药物过多。73%的人积极欢迎临床药师主导的咨询的可能性。
许多儿科姑息治疗患者的照顾者经常在为孩子规划、准备和提供药物治疗方面遇到困难。尝试简化药物治疗方案、选择更易于管理和测量的制剂、投资改善照顾者培训、与照顾者讨论治疗方法以及让临床药师澄清他们的疑虑，这些都可能是改善这种情况和减轻负担的潜在策略。
