Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study
Hospice and Palliative Care Nursing; Palliative Care; Caregivers; Child; Drug Compounding; Humans; Palliative Care; Parents; Quality of Life
BACKGROUND: 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., AIM: This study aimed at investigating the complexity of the daily therapy management and exploring the parents' opinions about galenic compounds., DESIGN: Parents were interviewed by using a structured questionnaire., SETTING: 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., RESULTS: 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., CONCLUSIONS: 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.
Burlo F; Zanon D; Passone E; Toniutti M; Ponis G; Barbi E; Taucar V; De Zen L
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231151733" target="_blank" rel="noreferrer noopener">10.1177/02692163231151733</a>
International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS
life-limiting conditions; Pediatric palliative care; terminal illness; life-threatening conditions; international standards for pediatric palliative care
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. METHODS: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. RESULTS: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. CONCLUSION: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.
Benini F; Pappadatou D; Bernadá M; Craig F; De Zen L; Downing J; Drake R; Freidrichsdorf S; Garros D; Giacomelli L; Lacerda A; Lazzarin P; Marceglia S; Marston J; Muckaden MA; Papa S; Parravicini E; Pellegatta F; Wolfe J
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.12.031" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.031</a>
Safety and Feasibility of Home Transfusions in Pediatric Palliative Care: A Preliminary Report
fatigue; Pediatric palliative care; symptom management; home transfusion support; thrombocytopenia
Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research focuses on the safety and feasibility of a home transfusion program. Method(s): This is a case series of patients between 0 and 18 years diagnosed with advanced malignancy or incurable chronic conditions and eligible to Pediatric Palliative Care who received home platelet or packed red cell transfusions. For all patients, we recorded adverse events such as acute hemolytic reactions, allergic reactions, or any emergency condition requiring hospital admission, equipment failure, blood product transport or storage errors, errors in patient identification, and personnel safety issues. We explored parental satisfaction with a Likert-type questionnaire and short open questions. Result(s): We reviewed 101 transfusion procedures for six patients in Pediatric Palliative Care performed by the Regional Pediatric Palliative Care network between 2014 and 2020. We did not report any adverse effects. Families reported satisfaction and a sense of safety and positively evaluated the opportunity of having transfusion at home to minimize the disruption in everyday life. The cost analysis resulted in a consistent saving for the Regional Health System. Conclusion(s): This study supports the safety and feasibility of home transfusion in Pediatric Palliative Care. Copyright © 2021 American Academy of Hospice and Palliative Medicine
De Zen L; Del Rizzo I; Vendrametto V; Nicolardi F; Vaccher S; Dall'Amico R; Rabusin M; Barbi E; Passone E
Journal of Pain and Symptom Management.
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.09.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.09.018</a>