scholarly journals Palliative Care for Children with Central Nervous System Malignancies

2018 ◽  
Vol 5 (4) ◽  
pp. 85 ◽  
Author(s):  
Peter Baenziger ◽  
Karen Moody

Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary pediatric palliative care.

Author(s):  
Peter Baenziger ◽  
Karen Moody

Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary palliative care


Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1043
Author(s):  
Silvia Ortiz-Campoy ◽  
Cristina Lirio-Romero ◽  
Helena Romay-Barrero ◽  
David Martín-Caro Álvarez ◽  
Purificación López-Muñoz ◽  
...  

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.


Author(s):  
David Hui

This chapter discusses the Zimmermann trial, a large partially blinded, cluster randomized controlled trial of routine oncology care with or without early routine referral to palliative care. This landmark study found that early palliative care involvement was associated with improved quality of life, symptom burden and satisfaction among patients with advanced cancer. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a relevant clinical case to illustrate some key points around palliative care referral.


Author(s):  
A. S. Simakhodskiy ◽  
S. I. Minchenko ◽  
A. E. Tkachenko

Palliative care is a system of medical measures aimed at maintaining the quality of life of patients with incurable, life-threatening and severely occurring diseases, at the highest possible for a given patient’s condition, a comfortable level for the person. At the same time the provision of palliative care for children differs considerably from adults. There was executed the analysis of the dynamics of the development of palliative care for children in the city of St. Petersburg for 2011-2015. Features of its implementation, changes in the number of those in need, the restructuring of hospital beds fund, the development of hospital substitution technologies, there are presented delivered guidelines for the different types of palliative care for children.


Author(s):  
Vanessa Battista ◽  
Gina Santucci

Pediatric palliative care (PPC) is an essential service for children living with chronic and/or life-threatening conditions. Pediatric palliative care aims to improve the quality of life of children with life-threatening illnesses and their families. Pediatric palliative care can be provided in tertiary care facilities, community health centers, and in children’s homes. Terminially ill children die in the hospital and at home, necessitating more home-based PPC and hospice services. A variety of factors must be considered when caring for children and families in their home setting. It is essential to proactively identify and manage pain as well as other symptoms. There should also be attention paid to other areas important to the child: psychological, social, or spiritual domains of care.


2018 ◽  
Vol 33 (2) ◽  
pp. 123-134 ◽  
Author(s):  
Jessica J Fulton ◽  
Thomas W LeBlanc ◽  
Toni M Cutson ◽  
Kathryn N Porter Starr ◽  
Arif Kamal ◽  
...  

Background: Despite increasing emphasis on integration of palliative care with disease-directed care for advanced cancer, the nature of this integration and its effects on patient and caregiver outcomes are not well-understood. Aim: We evaluated the effects of integrated outpatient palliative and oncology care for advanced cancer on patient and caregiver outcomes. Design: Following a standard protocol (PROSPERO: CRD42017057541), investigators independently screened reports to identify randomized controlled trials or quasi-experimental studies that evaluated the effect of integrated outpatient palliative and oncology care interventions on quality of life, survival, and healthcare utilization among adults with advanced cancer. Data were synthesized using random-effects meta-analyses, supplemented with qualitative methods when necessary. Data sources: English-language peer-reviewed publications in PubMed, CINAHL, and Cochrane Central through November 2016. We subsequently updated our PubMed search through July 2018. Results: Eight randomized-controlled and two cluster-randomized trials were included. Most patients had multiple advanced cancers, with median time from diagnosis or recurrence to enrollment ranging from 8 to 12 weeks. All interventions included a multidisciplinary team, were classified as “moderately integrated,” and addressed physical and psychological symptoms. In a meta-analysis, short-term quality of life improved, symptom burden improved, and all-cause mortality decreased. Qualitative analyses revealed no association between integration elements, palliative care intervention elements, and intervention impact. Utilization and caregiver outcomes were often not reported. Conclusions: Moderately integrated palliative and oncology outpatient interventions had positive effects on short-term quality of life, symptom burden, and survival. Evidence for effects on healthcare utilization and caregiver outcomes remains sparse.


2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii438-iii438
Author(s):  
Kathleen Dorris ◽  
Jessica Channell ◽  
Ashley Mettetal ◽  
Molly Hemenway ◽  
Natalie Briones ◽  
...  

Abstract BACKGROUND Cannabinoids, including cannabidiol (CBD) and tetrahydrocannabinol (THC), are a class of compounds found in marijuana. Numerous studies in adults have examined cannabinoid use in management of cancer-related symptoms such as nausea, anorexia, and pain. Less is known about the use in the pediatric oncology population. METHODS A prospective observational study has been ongoing since 2016 at Children’s Hospital Colorado to evaluate cannabinoids’ impact using PedsQL™ modules on quality of life of pediatric patients with central nervous system (CNS) tumors who are 2–18 years old. Laboratory assessments of T-cell activity and pharmacokinetics of CBD, THC and associated metabolites are in process. Diaries with exploratory information on cannabinoid use patterns are being collected. RESULTS Thirty-three patients (14:19; male:female) have been enrolled with a median age of 6.4 years (range, 2.9–17.7 years). The most common tumor type in enrolled patients is embryonal tumors (13/33; 39%). Nine (27%) patients have low-grade glial/glioneuronal tumors, and eight (24%) had high-grade/diffuse midline gliomas. The remaining patients had ependymoma or craniopharyngioma. The median time on cannabinoids is 9 months. Most (n=20) patients have used oral products with CBD and THC. One patient continues on cannabinoid therapy in follow up. Preliminary immune function analyses identified impaired neutrophil superoxide anion production and chemotaxis in patients taking cannabinoids at early time points on therapy. CONCLUSIONS Families of children with various CNS tumors are pursuing cannabinoid therapy for both antitumor and supportive care purposes. Analysis of the impact of cannabinoids on patients’ quality of life is ongoing.


2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.


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