End‐of‐life care in pediatric neuro‐oncology

Vallero, Stefano; Lijoi, Stefano; Bertin, Daniele; Pittana, Laura Stefania; Bellini, Simona; Rossi, Francesca; Peretta, Paola; Basso, Maria Eleonora

doi:10.1002/pbc.25160

Cited by 30 publications

(20 citation statements)

References 14 publications

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“…Other teams in Italy reported on the provision of supportive treatment and end-of-life care at home settled by the Reference Oncology Team in the Hub Centre throughout cooperation with Spoke hospitals 18,19 .…”

Section: Discussionmentioning

confidence: 99%

Safety and family satisfaction of a home-delivered chemotherapy program for children with cancer

Zen

Rizzo

Ronfani

et al. 2020

Preprint

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Background: Home chemotherapy programs for children with cancer are safe and feasible, and their impact on the quality of life has been reported in different countries. A home chemotherapy program was implemented between 2011 and 2019 in an Italian region. This pilot study investigates its safety and, feasibility, along with parental satisfaction. Methods: Patients between 0 and 18 years diagnosed with malignancy were included. Deceased patients and patients whose families moved abroad or interrupted contact with the service were excluded. Adverse events comprised immediate deterioration of the patient’s condition, equipment failure, errors in drug storage, dose or patient identification and personnel safety issues. Parental satisfaction was explored through an email survey of 32 Likert-type and short open questions. Results: Thirty-five patients received 419 doses of intravenous chemotherapy at home (cytarabine, vincristine, vinblastine). No adverse events were reported. Twenty-three families out of 25 eligible completed the survey. Most reported being “very satisfied” with the possibility of maintaining a work/domestic routine and reducing time and financial burden of hospital access. Most were “very satisfied” with the opportunity for their child of being less troubled by the treatment. Besides, most reported being “very satisfied” with the chance for healthy siblings of maintaining their routine and coping with their brother/sister’s disease. Most perceived the program as safe. All families recommended extending the program to all children in the region. Conclusions: This first Italian study supports home chemotherapy as safe and effective, positively influencing the quality of life for children and families.

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Section: Discussionmentioning

confidence: 99%

Safety and family satisfaction of a home-delivered chemotherapy program for children with cancer

Zen

Rizzo

Ronfani

et al. 2020

Preprint

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“…27 , 28 In addition to the most common symptoms of other childhood cancers (fatigue, pain, dyspnea), children with brain tumors can also suffer dysphagia and dysarthria, hearing and vision loss, paralysis, seizures, agitation, headache, and cognitive and behavioral changes. 29,30,31 Oromotor Dysfunction and Secretions…”

Section: Symptom Burdenmentioning

confidence: 99%

Palliative Care for Children with Central Nervous System Malignancies

Baenziger

Moody

2018

Preprint

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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

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“…30 For example, the disease progression among children with central nervous system tumors often includes neurological deficits, paralysis, cognitive deterioration, and behavioral alterations. 59 At the end of life, these children typically experience multiple body function failures that often include uncontrolled pain, shortness of breath, and fatigue. 60 At these times, many families express that they believe their child is suffering and they want to make the suffering stop.…”

Section: Model Developmentmentioning

confidence: 99%

Determinants of Access to Pediatric Hospice Care

Lindley

2015

Journal of Hospice & Palliative Nursing

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One of the many difficult moments for families of children with life-limiting illnesses is to make the decision to access pediatric hospice care. Although determinants that influence families’ decisions to access pediatric hospice care have been recently identified, the relationship between these determinants and access to pediatric hospice care have not been explicated or grounded in accepted healthcare theories or models. Using the Andersen Behavioral Healthcare Utilization Model, this article presents a conceptual model describing the determinants of hospice access. Predisposing (demographic; social support; and knowledge, beliefs, and values), enabling (family and community resources) and need (perceived and evaluated needs) factors were identified through the use of hospice literature. The relationships among these factors are described and implications of the model for future study and practice are discussed.

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End‐of‐life care in pediatric neuro‐oncology

Cited by 30 publications

References 14 publications

Safety and family satisfaction of a home-delivered chemotherapy program for children with cancer

Safety and family satisfaction of a home-delivered chemotherapy program for children with cancer

Palliative Care for Children with Central Nervous System Malignancies

Determinants of Access to Pediatric Hospice Care

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