Evaluation of the need for hospital-based pediatric palliative care in a single center

Yıl 2022, Cilt: 5 Sayı: 3, 809 - 814, 30.05.2022

Nihal Durmaz , Bahar Öztelcan Gündüz , Erman Atas

https://doi.org/10.32322/jhsm.1039048

Cited By: 1

Öz

Introduction/Aim: Cancer is one of the leading causes of death for children . Evidence suggests that these children experience substantial suffering from physical and emotional symptoms. Over the past two decades, paediatric palliative care has emerged as an approach that aims to ease suffering for children and their families coping with any life-threatening illness. Our aim is to encourage the expansion of palliative care centers for children with cancer and integration of these into healthcare services to assist clinicians and policy makers in developing services that address these needs.
Material and Method: Our study is a single-center retrospective cohort study. The records of 39 patients who were followed up in the pediatric oncology clinic between 2010-2021 and died were reviewed retrospectively.
Results: The age of diagnosis of patients was the most in the 6-12 range (n=16; 41%) and the least in the adolescent (n=11; 28.2%) age range. The cause of death was related to a disease in 79.5%. Treatment-related deaths were seen in eight patients, four of which were chemotherapy toxicity, two were engraftment failure in autologous hematopoietic stem cell transplantation, and two were post-transplant GVHD. 76.9% of the patients died in the intensive care unit.
Conclusion: In our study, patients with cancer and those who lost their lives were evaluated retrospectively in terms of symptom load, invasive procedures, and psychosocial needs and the need for end-of-life palliative care. Many studies have confirmed that the timely integration of palliative care into routine oncological care has many advantages, such as improvements in physical and psychological symptoms, quality of life and prognosis, as well as reducing costs. In Turkey, palliative treatment is tried to be provided to late stage pediatric cancer patients by pediatric intensive care units and pediatric oncologists. This both increases the workload of physicians and causes intensive care bed occupation. The development and expansion of palliative care on late stage pediatric cancer patients will contribute significantly to the quality of life of both children and their families.

Anahtar Kelimeler

Palliative Care, Cancer, Children

Kaynakça

• WHO | Global Initiative for Childhood Cancer [Internet]. WHO. World Health Organization; 2018 [cited 2021 May 29]. Available from: http: //www.who.int/cancer/childhood-cancer/en/
• Siegel RL, Miller KD, Jemal A. Cancer statistics, 2018. CA Cancer J Clin 2018; 68: 7-30.
• Kutluk T, Yeşilipek A. pediatric Cancer Registry in Turkey 2009-2018. sıOp 2019 Congress meeting. Abstracts from the 51st Annual Conference of the ınternational society of paediatric Oncology (sıOp) pediatric Blood&Cancer 2019; 66: s566
• WHO | Palliative care. WHO [Internet] 2016 [cited 2021 May 29]; Available from: http: //www.who.int/cancer/palliative/en/
• Kaye EC, Gushue CA, DeMarsh S, et al. Illness and end-of-life experiences of children with cancer who receive palliative care. Pediatr Blood Cancer 2018; 65: 10.1002/pbc.26895.
• Mutafoglu K, Ince D, Kutluk T. Availability of palliative care services for children with cancer in Turkey. Asia Pac J Clin Oncol 2014; 10: 71.
• Corkum KS, Lautz TB, Hebal FN, et al. Procedural burden experienced by children with cancer during their terminal hospital admission. J Pediatr Surg 2019; 54: 133-9.
• Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Lehmann L, Wolfe J. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care. Blood 2010; 115: 3879-85.
• Wolfe J, Orellana L, Ullrich C, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 2015; 33: 1928-35.
• Osenga K, Postier A, Dreyfus J, et al. A comparison of circumstances at the end of life in a hospital setting for children with palliative care involvement versus those without. J Pain Symptom Manage 2016; 52: 673-80.
• Ozgul N, Gultekin M, Koc O, et al. Turkish community-based palliative care model: a unique design. Ann Oncol 2012; 23: 76-8.
• Göksel F, Şenel G, Oğuz G, et al. Development of palliative care services in Turkey. Eur J Cancer Care 2020; 29: 6-11.
• Duthey B, Scholten W. Adequacy of opioid analgesic consumption at country, global, and regional levels in 2010, its relationship with development level, and changes compared with 2006. J Pain Symptom Manag 2014; 47.
• Elçigil A, Maltepe H, Eşrefgil G, Mutafoğlu K. Bir üniversite hastanesinde hemşirelerin ağrının değerlendirilmesi ve yönetiminin önündeki engeller, Pediatrik Hematoloji/Onkoloji Dergisi 2011; 33: S33-S38.
• Boztepe H, Ay A, Akyüz C. Maternal pain management at home in children with cancer: a Turkish sample. J Pediatr Nurs 2020; 50: e99-e106.
• Wösten-van Asperen RM, van Gestel JPJ, van Grotel M, et al. PICU mortality of children with cancer admitted to pediatric intensive care unit a systematic review and meta-analysis. Crit Rev Oncol Hematol 2019; 142: 153-63.
• Al Haj Moussa A, Maaz AUR, Faqih N, Sundaram M. critically ill pediatric oncology patients: what the intensivist needs to know? pediatric critical care medicine. Indian J Crit Care Med 2020; 24: 1256-63.
• Bozan G, Dinleyici EÇ, Bozan G, Yarar C, Ulukapı HB, Çarman KB. Palliative care need in pediatric intensive care unit: single center experience. Osmangazi Tıp Derg 2020; 42: 357-362.
• Kaye EC, Gushue CA, DeMarsh S, et al. Illness and end-of-life experiences of children with cancer who receive palliative care Pediatr Blood Cancer 2018; 65: 10.1002/pbc.26895.
• Snaman JM, Kaye EC, Lu JJ, Sykes A, Baker JN. Palliative care involvement is associated with less intensive end-of-life care in adolescent and young adult oncology patients. J Palliat Med 2017; 20: 509-16.
• Snaman, J. Pediatric Palliative Care in Oncology. J Clin Oncol 2020; 20: 38: 954-62.
• Rossfeld ZM, Miller R, Tumin D, Tobias JD, Humphrey LM. Implications of pediatric palliative consultation for intensive care unit stay. J Palliat Med 2019; 22: 790-6.
• Rosenman MB, Vik T, Hui SL, Breitfeld PP. Hospital resource utilization in childhood cancer. J Pediatr Hematol Oncol 2005; 27: 295-300.
• Osman H, Shrestha S, Temin S. Palliative care in the global setting: ASCO Resource-Stratifed practice guideline. J Glob Oncol 2018; 4: 1-24. 10.
• Ehman J. References to spirituality, religion, beliefs, and cultural diversity in the joint commission's comprehensive accreditation manual for hospitals 2018. 2018 edition.
• Best M, Leget C, Goodhead A, Paal P. An EAPC white paper on multi-disciplinary education for spiritual care in palliative care. BMC Palliat Care 2020; 19: 9.
• Şirin T, Göksel F. Investigation of the spiritual care effects on anxiety, depression, psychological distress and spiritual levels of Turkish muslim radiotherapy patients. J Relig Health 2021; 60: 2484-502.
• Weaver MS, Heinze KE, Kelly KP, et al. Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer 2015; 62: S829-S833.