缓和医疗在癌症儿童患者中的研究应用进展
收稿日期: 2024-12-12
录用日期: 2024-12-26
网络出版日期: 2025-05-09
Research progress on application of palliative care in pediatric patients with cancer
Received date: 2024-12-12
Accepted date: 2024-12-26
Online published: 2025-05-09
缓和医疗作为一种有效提高癌症患者及其家属生活质量的方法，在我国儿童及青少年患者中仍处于破冰阶段。目前儿童及青少年群体接受缓和医疗的比例较低，尚缺乏对既往有关儿童恶性肿瘤患儿的临终关怀方法的研究应用的有效整合，暂无明确的干预标准、统一的疾病不同进展阶段患儿相对应的缓和医疗指南。本文系统、全面地介绍了缓和医疗在儿科中的起源和发展，探讨了缓和医疗在改善肿瘤患儿生活质量、提高沟通及决策效率、降低住院成本等方面的作用，以及简要概述了缓和医疗在肿瘤患儿中实际实施中的应用障碍，能够为我国缓和医疗的制定和实施提供一定的参考，并为儿童癌症患者深入开展缓和医疗提供借鉴。
刘福惠 , 刘福泽 , 吕祖芳 . 缓和医疗在癌症儿童患者中的研究应用进展[J]. 临床儿科杂志, 2025 , 43(5) : 389 -394 . DOI: 10.12372/jcp.2025.24e1337
Palliative care, as an effective method to improve the quality of life of cancer patients and their families, is still in the ice-breaking stage among children and adolescent patients in China. Currently, the percentage of pediatric and adolescent patients receiving palliative care remains low. There is still a lack of effective integration of previous research applications on end-of-life care methods for children with malignant tumors in children. Clear intervention standards are yet to be established, or unified guidelines for palliative care corresponding to children at different stages of disease progression. This article meticulously and comprehensively outlines the origins and evolution of palliative medicine within pediatrics, exploring how palliative care enhances the quality of life for pediatric oncology patients, streamlines communication and decision-making processes, and diminishes hospitalization expenses, as well as briefly outlining the barriers to the practical implementation of palliative care in children with oncology. This paper can provide some reference for the development and implementation of palliative care in China, and provide a reference for the in-depth implementation of palliative care for children with cancer.
Key words： palliative care; hospice care; cancer; malignant tumors; child
| [1] | WHO launches new tools to help countries build effective childhood cancer programmes[J]. Saudi Med J, 2021, 42(3): 345-346. |
| [2] | Steliarova-Foucher E, Colombet M, Ries LAG, et al. International incidence of childhood cancer, 2001-10: a population-based registry study[J]. Lancet Oncol, 2017, 18(6): 719-731. |
| [3] | Siegel RL, Giaquinto AN, Jemal A. Cancer statistics, 2024[J]. CA Cancer J Clin, 2024, 74(1): 12-49. |
| [4] | Louis DN, Perry A, Reifenberger G, et al. The 2016 World Health Organization Classification of Tumors of the Central Nervous System: a summary[J]. Acta Neuropathol, 2016, 131(6): 803-820. |
| [5] | WellsE EM, Packer RJ. Pediatric brain tumors[J]. Continuum (Minneap Minn), 2015: 1538-6899. |
| [6] | Brinkman TM, Recklitis CJ, Michel G, et al. Psychological Symptoms, social outcomes, socioeconomic attainment, and health behaviors among survivors of childhood cancer_ current state of the literature[J]. J Clin Oncol, 2018: 36(21): 2190-2197. |
| [7] | 熊仪, 张六一, 胡琦琦, 等. 儿童和青少年癌症患者终末期真实体验与需求的Meta整合[J]. 护理学杂志, 2023, 38(18): 12-16. |
| Xiong Y, Zhang L, Hu QQ, et al. Lived experience and needs of children and adolescents in the terminal stage of cancer:a meta synthesis of qualitative research[J]. Hulixue Zazhi, 38(18): 12-16. | |
| [8] | 唐涵, 何文奇, 崔盼盼, 等. 儿童和青少年癌症患者灵性照护的研究进展[J]. 护理学杂志, 2019, 34(7): 103-106. |
| Tang H, He W, Cui PP, et al. Advances in researches on spiritual care for children and adolescents with cancer[J]. Hulixue Zazhi, 2019, 34(7): 103-106. | |
| [9] | Singh R, Shirali R, Chatterjee S, et al. Epidemiology of cancers among adolescents and young adults from a tertiary cancer center in Delhi[J]. Indian J Med Paediatr Oncol, 2016, 37(2): 90-94. |
| [10] | Blonigen BJ, Steinmetz RD, Levin L, et al. Irradiated volume as a predictor of brain radionecrosis after linear accelerator stereotactic radiosurgery[J]. Int J Radiat Oncol Biol Phys, 2010, 77(4): 996-1001. |
| [11] | Renzi S, Michaeli O, Ramaswamy V, et al. Causes of death in pediatric neuro-oncology: the sickkids experience from 2000 to 2017[J]. J Neurooncol, 2020, 149(1): 181-189. |
| [12] | Ruhlmann CH, Jahn F, Jordan K, et al. 2016 updated MASCC/ESMO consensus recommendations: prevention of radiotherapy-induced nausea and vomiting[J]. Support Care Cancer, 2017, 25(1): 309-316. |
| [13] | 秦悦. 放疗期间儿童及青少年脑瘤患者心理及生活质量的单因素及多因素分析[D]. 南方医科大学, 2024. |
| Qin Y. Single and multiple factor analysis of psychological status and quality of life in children and adolescent brain tumor patients during radiotherapy[D]. Southern Medical University, 2024. | |
| [14] | Liao KC, Chuang HC, Chien CY, et al. Quality of life as a mediator between cancer stage and long-term mortality in nasopharyngeal cancer patients treated with intensity-modulated radiotherapy[J]. Cancers (Basel), 2021, 13(20): 5063. |
| [15] | Bunevicius A. Personality traits, patient-centered health status and prognosis of brain tumor patients[J]. J Neurooncol, 2018, 137(3): 593-600. |
| [16] | Lutgendorf SK, Sood AK, Antoni MH. Host factors and cancer progression: biobehavioral signaling pathways and interventions[J]. J Clin Oncol, 2010, 28(26): 4094-4099. |
| [17] | Antoni MH, Dhabhar FS. The impact of psychosocial stress and stress management on immune responses in patients with cancer[J]. Cancer, 2019, 125(9): 1417-1431. |
| [18] | Tack L, Schofield P, Boterberg T, et al. Psychosocial Care after Cancer Diagnosis: Recent Advances and Challenges[J]. Cancers (Basel), 2022, 14(23): 5882. |
| [19] | 王勤, 鲁才红, 黄雯, 等. 舒缓医疗在心力衰竭病人中的应用研究进展[J]. 护理研究, 2023, 37(2): 252-257. |
| Wang Q, Lu CH, Huang W, et al. Research progress of application of palliative care in patients with heart failure[J]. Huli Yanjiu, 2023, 37(2): 252-257. | |
| [20] | 阎格, 武宜金, 宁晓红, 等. 北京协和医院安宁缓和医疗探索与实践[J]. 医学与社会, 2023, 36(10): 1-7. |
| Yan G, Wu Y, Ning X, et al. Exploration and practice of hospice and palliative care in Peking union medical College Hospital[J]. Yixue Yu Shehui, 2023, 36(10): 1-7. | |
| [21] | Lundgren J, Thiblin E, Lutvica N, et al. Concerns experienced by parents of children treated for cancer: A qualitative study to inform adaptations to an internet-administered, low-intensity cognitive behavioral therapy intervention[J]. Psychooncology, 2023, 32(2): 237-246. |
| [22] | Hammen C, Brennan PA, Shih JH. Family discord and stress predictors of depression and other disorders in adolescent children of depressed and nondepressed women[J]. J Am Acad Child Adolesc Psychiatry, 2004, 43(8): 994-1002. |
| [23] | Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring[J]. Pediatrics, 2014, 133(Suppl 1) : S8-S15. |
| [24] | 王琳. 白血病患儿家庭的需求调查及舒缓疗护个案干预[D]. 山西医科大学, 2018. |
| Wang L. Needs assessment of families of children with leukemia and case intervention of palliative care[D]. Shanxi Medical University, 2018. | |
| [25] | 刘辉, 赵咪, 徐奕旻. 儿童安宁疗护研究国际热点及发展趋势可视化分析[J]. 医学与哲学, 2021, 42(6): 34-38. |
| Liu H, Zhao M, Xu YM. Visualized analysis of international hotspots of pediatric hospice research and its development trend[J]. Yixue Yu Zhexue, 2021, 42(6): 34-38. | |
| [26] | Pyke-Grimm KA, Fisher B, Haskamp A, et al. Providing palliative and hospice care to children, adolescents and young adults with cancer[J]. Semin Oncol Nurs, 2021, 37(3): 151166. |
| [27] | Section on Hospice and Palliative Medicine and Committee on Hospital Care. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations[J]. Pediatrics, 2013, 132(5): 966-972. |
| [28] | 向仕婷, 林国嬿, 李逊, 等. 儿童舒缓治疗的意义和发展现状[J]. 中国当代儿科杂志, 2020, 22(6): 662-666. |
| Xiang ST, Lin GY, Li X, et al. Significance and current development status of pediatric palliative care[J]. Zhongguo Dangdai Erke Zazhi, 2020, 22(6): 662-666. | |
| [29] | Higginson IJ. End-of-life care: lessons from other nations[J]. Palliat Med, 2005, 8(Suppl 1): S161-S173. |
| [30] | Knapp C, Woodworth L, Wright M, et al. Pediatric palliative care provision around the world: a systematic review[J]. Pediatr Blood Cancer, 2011, 57(3): 361-368. |
| [31] | Snaman J, McCarthy S, Wiener L, et al. Pediatric palliative care in oncology[J]. J Clin Oncol, 2020, 38(9): 954-962. |
| [32] | Brock KE, Allen KE, Falk E, et al. Association of a pediatric palliative oncology clinic on palliative care access, timing and location of care for children with cancer[J]. Support Care Cancer, 2021, 29(4): 1849-1857. |
| [33] | 叶建亚, 张学茹, 王绮, 等. 我国儿童安宁疗护的机遇与挑战[J]. 医学与哲学, 2019, 40(14): 31-33. |
| Ye JY, Zhang XR, Wang Q, et al. Opportunities and challenges of children's palliative care in China[J]. Yixue Yu Zhexue, 2019, 40(14): 31-33. | |
| [34] | Cataudella DA, Zelcer S. Psychological experiences of children with brain tumors at end of life: parental perspectives[J]. Palliat Med, 2012, 15(11): 1191-1197. |
| [35] | Ferrell B, Connor SR, Cordes A, et al. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum[J]. J Pain Symptom Manage, 2007, 33(6): 737-744. |
| [36] | Bell CJ, Skiles J, Pradhan K, et al. End-of-life experiences in adolescents dying with cancer[J]. Support Care Cancer, 2010, 18(7): 827-835. |
| [37] | Hechler T, Blankenburg M, Friedrichsdorf SJ, et al. Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer[J]. Klin Padiatr, 2008, 220(3): 166-174. |
| [38] | Saad R, Huijer HA, Noureddine S, et al. Bereaved parental evaluation of the quality of a palliative care program in Lebanon[J]. Pediatr Blood Cancer, 2011, 57(2): 310-316. |
| [39] | Von Lützau P, Otto M, Hechler T, et al. Children dying from cancer: parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions[J]. Palliat Care, 2012, 28(4): 274-281. |
| [40] | Theunissen JM, Hoogerbrugge PM, van Achterberg T, et al. Symptoms in the palliative phase of children with cancer[J]. Pediatr Blood Cancer, 2007, 49(2): 160-165. |
| [41] | Hunt H, Valdimarsdottir U, Mucci L, et al. When death appears best for the child with severe malignancy: a nationwide parental follow-up[J]. Palliat Med, 2006, 20(6): 567-577. |
| [42] | Levine DR, Mandrell BN, Sykes A, et al. Patients' and parents' needs, attitudes, and perceptions about early palliative care integration in pediatric oncology[J]. JAMA Oncol, 2017, 3(9): 1214-1220. |
| [43] | Van der Geest IM, Darlington AS, Streng IC, et al. Parents' experiences of pediatric palliative care and the impact on long-term parental grief[J]. J Pain Symptom Manage, 2014, 47(6): 1043-1053. |
| [44] | Rosenberg AR, Baker KS, Syrjala K, et al. Systematic review of psychosocial morbidities among bereaved parents of children with cancer[J]. Pediatr Blood Cancer, 2012, 58(4): 503-512. |
| [45] | Kassam A, Skiadaresis J, Alexander S, et al. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?[J]. Pediatr Blood Cancer, 2014, 61(5): 859-864. |
| [46] | Sisk BA, Friedrich A, Blazin LJ, et al. Communication in pediatric oncology: a qualitative study.[J]. Pediatrics, 2020, 146(3): e20201193. |
| [47] | Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences[J]. Clin Oncol, 2010, 28(7): 1203-1208. |
| [48] | Snaman JM, Torres C, Duffy B, et al. Parental perspectives of communication at the end of life at a pediatric oncology institution[J]. Palliat Med, 2016, 19(3): 326-332. |
| [49] | Pyke-Grimm KA, Franck LS, Halpern-Felsher B, et al. 3 dimensions of treatment decision making in adolescents and young adults with cancer[J]. Cancer Nurs, 2020, 43(6): 436-445. |
| [50] | Keim-Malpass J, Stegenga K, Loudin B, et al. “It's Back! My Remission Is Over”: Online communication of disease progression among adolescents with cancer[J]. Pediatr Oncol Nurs, 2016, 33(3): 209-217. |
| [51] | Mack JW, Fasciano KM, Block SD. Adolescent and young adult cancer patients' experiences with treatment decision-making.[J] Pediatrics, 2019, 143(5): e20182800. |
| [52] | Weaver MS, Baker JN, Gattuso JS, et al. Adolescents' preferences for treatment decisional involvement during their cancer[J]. Cancer, 2015, 121(24): 4416-4424. |
| [53] | Friebert S, Grossoehme DH, Baker JN, et al. Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care[J]. JAMA Netw Open, 2020, 3(5): e205424. |
| [54] | Lyon ME, Garvie PA, D'Angelo LJ, et al. Advance care planning and HIV symptoms in adolescence.[J]. Pediatrics, 2018, 142(5): e20173869. |
| [55] | Salins N, Hughes S, Preston N. Presuppositions, cost-benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study[J]. BMC Palliat Care, 2022, 21(1): 215. |
| [56] | Chong PH, De Castro Molina JA, Teo K, et al. Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program[J]. BMC Palliat Care, 2018, 17(1): 11. |
| [57] | Bartel DA, Engler AJ, Natale JE, et al. Working with families of suddenly and critically ill children: physician experiences[J]. Arch Pediatr Adolesc Med, 2000, 154(11): 1127-1133. |
| [58] | Kersun L, Gyi L, Morrison WE. Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians[J]. Palliat Med, 2009, 12(6): 525-530. |
| [59] | Meadors P, Lamson A. Compassion fatigue and secondary traumatization: provider self care on intensive care units for children[J]. Pediatr Health Care, 2008, 22(1): 24-34. |
| [60] | Morgan D. Caring for dying children: assessing the needs of the pediatric palliative care nurse[J]. Pediatr Nurs, 2009, 35(2): 86-90. |
| [61] | Feudtner C, Hexem KR, Shabbout M, et al. Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study[J]. Palliat Med, 2009, 12(2): 160-169. |
| [62] | Williams-Reade J, Lamson AL, Knight SM, et al. Paediatric palliative care: a review of needs, obstacles and the future[J]. Nurs Manag, 2015, 23(1): 4-14. |
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