Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments
Palliative Care; pain; quality of life; pediatric palliative care; symptoms; assessment tools
The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient's best interest,PPC healthcare providers should start using available tools, regardless of their validation status.
Papa S; Mercante A; Giacomelli L; Benini F
Children (Basel)
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/10.3390/children10081406" target="_blank" rel="noreferrer noopener">10.3390/children10081406</a>
A pilot study on sports activities in pediatric palliative care: just do it
Palliative Care; child; article; controlled study; female; human; male; caregiver; palliative therapy; quality of life; Pilot Projects; Sports; personal experience; pilot study; juvenile; motor dysfunction; questionnaire; exercise; physical activity; swimming; International Classification of Functioning Disability and Health; mental deficiency
Avagnina I; Santini A; Maghini I; Salamon E; Papa S; Giacomelli L; Perilongo G; Agosto C; Benini F
BMC Palliative Care
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="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01164-x">10.1186/s12904-023-01164-x</a>
International Project on Troublesome Symptoms in Paediatric Palliative Care Will Focus on Neuro-Irritability, Dystonia and Sleep Disorders
Dystonia; Palliative Care; Sleep Disorders
The World Health Organization describes paediatric palliative care (PPC) as the active total care of the child's body, mind and spirit and supporting their family.1 It should be established as early as possible and continued along the entire disease trajectory.2 Advances in medical care for children with life-limiting or life-threatening diseases mean that PPC plans can last for years and may change according to the disease progression, the child's development and the evolution of symptoms.2 [...]
Avagnina I; Giacomelli L; Mercante A; Benini F
Acta Paediatrica
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/10.1111/apa.16663" target="_blank" rel="noreferrer noopener">10.1111/apa.16663</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>
COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions
Child; Covid-19; epidemiology; Humans; Palliative Care; Pandemics; Retrospective Studies; SARS-CoV-2
INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy). Testing methodology, prevention strategies and infection characteristics were documented and compared during the first and second peak of SARS-CoV-2 infection. RESULTS: Between April-June 2020 a population swab screening was performed and a strong reduction of the habitual family support was observed. Between November 2020-January 2021 swab testing was limited to specific cases and the support network for families was partially restored. Incidence of COVID-19 was low, resulting in 0.04% of total pediatic cases in the Veneto Region. No severe forms were observed. CONCLUSION: The use of adequate preventive measures by families and support networks associated with testing in specific contests is safe, cost effective and has a minor impact on caregiver's care load.
Avagnina I; Zanin A; Lazzarin P; Grigolon E; Shahi A; Papa S; Giacomelli L; Benini F
Annali dell'Istituto Superiore di Sanità
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/10.4415/ann_21_04_03" target="_blank" rel="noreferrer noopener">10.4415/ann_21_04_03</a>
The use of medical cannabis in pediatric palliative care: a case series
Pediatric palliative care; chronic pain; Cannabidiol; cannabis; D9-tetrahydrocannabinol
BACKGROUND: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. CASE PRESENTATION: We aimed to describe a clinical experience in a setting where high-level evidence may not be obtained. We report our clinical experience in a pediatric palliative care department in Italy. Caregivers reported changes in intensity and frequency of pain and epilepsy events. Six patients received a titrated plant extract of cannabis sativa for 1 year. Only mild and transient adverse events occurred: drowsiness, euphoria, restlessness and tachycardia; the resolution was either spontaneous or obtained by modifying the administration schedule. Treatment was never discontinued. No overdoses occurred. All patients experienced seizures during the pre-treatment observation period, and obtained a reduction in seizure frequency, although with variable extent while receiving cannabis. In addition, a benefit on pain was observed, based on the caregiver's evaluation, and a reduction of analgesic use. CONCLUSION: Our experience suggests that a titrated plant extract preparation of medical cannabis may be useful to control treatment-resistant pain and epilepsy in PPC patients.
Divisic A; Avagnina I; De Tommasi V; Santini A; Brogelli L; Giacomelli L; Benini F
Italian Journal of Pediatrics
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/10.1186/s13052-021-01179-1" target="_blank" rel="noreferrer noopener">10.1186/s13052-021-01179-1</a>
Refractory symptoms in paediatric palliative care: can ketamine help?
children; clinical needs; ketamine; paediatric palliative care; refractory symptoms
BACKGROUND: One of the main challenges for paediatric palliative care (PPC) is the management of concomitant, different and severe symptoms that frequently affect the quality of life of PPC patients and are often refractory to commonly used pharmacological treatments. Consequently, many efforts are still needed to find the best therapeutic options to handle these refractory conditions. Since the first synthesis of ketamine in the 1960s, its pharmacokinetic and pharmacodynamic properties have been largely investigated and its potential wide range of clinical applications has become clear. However, this molecule still receives poor attention in some areas, including in children and PPC. This narrative review analyses the use of ketamine in children and the potential extension of its applications in PPC in order to provide new options for treatment in the PPC setting. METHODS: Scientific papers published before October 2020 on MEDLINE, EMBASE and the Cochrane Library were considered. The cited references of the selected papers and the authors' personal collections of literature were reviewed. The terms "palliative care", "ketamine", "neuropathic pain", "procedural pain", "status epilepticus", "refractory pain" and "child", adding "age: birth-18 years" on a further filter were used for the search. DISCUSSION: The use of ketamine in PPC should be more widely considered due to its overall favourable safety profile and its efficacy, which are supported by an increasing number of studies, although in settings different from PPC and of mixed quality. Ketamine should be proposed according to a case-by-case evaluation and the specific diagnosis and the dosage and route of administration should be tailored to the specific needs of patients. Furthermore, there is evidence to suggest that ketamine is safe and efficacious in acute pain. These findings can prompt further research on the use of ketamine for the treatment of acute pain in PPC. CONCLUSION: Ketamine could be a suitable option after the failure of conventional drugs in the treatment of different refractory conditions in PPC.
Benini F; Congedi S; Giacomelli L; Papa S; Shah A; Milani G
Drugs Context
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/10.7573/dic.2021-2-5" target="_blank" rel="noreferrer noopener">10.7573/dic.2021-2-5</a>