所有患者需要长期随访,并应定期进行脑部 MRI 扫描。推荐对所有颅咽管瘤患者行常规内分泌科随诊;还推荐进行术后眼科定期随访。[8]Halac I, Zimmerman D. Endocrine manifestations of craniopharyngioma. Childs Nerv Syst. 2005;21:640-648.http://www.ncbi.nlm.nih.gov/pubmed/16047216?tool=bestpractice.com[18]Rajan B, Ashley S, Thomas DG, et al. Craniopharyngioma: improving outcome by early recognition and treatment of acute complications. Int J Radiat Oncol Biol Phys. 1997;37:517-521.http://www.ncbi.nlm.nih.gov/pubmed/9112447?tool=bestpractice.com[20]Sorva R, Heiskanen O, Perheetupa J. Craniopharyngioma surgery in children: endocrine and visual outcome. Childs Nerv Syst. 1998;4:97-99.http://www.ncbi.nlm.nih.gov/pubmed/3401877?tool=bestpractice.com[38]Müller HL. Consequences of craniopharyngioma surgery in children. J Clin Endocrinol Metab. 2011;96:1981-1991.http://jcem.endojournals.org/content/96/7/1981.longhttp://www.ncbi.nlm.nih.gov/pubmed/21508127?tool=bestpractice.com[39]Poretti A, Grotzer MA, Ribi K, et al. Outcome of craniopharyngioma in children: long-term complications and quality of life. Dev Med Child Neurol. 2004;46:220-229.http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2004.tb00476.x/pdfhttp://www.ncbi.nlm.nih.gov/pubmed/15077699?tool=bestpractice.com[58]Dekkers OM, Biermasz NR, Smit JW, et al. Quality of life in treated adult craniopharyngioma patients. Eur J Endocrinol. 2006;154:483-489.http://www.eje-online.org/content/154/3/483.full.pdfhttp://www.ncbi.nlm.nih.gov/pubmed/16498063?tool=bestpractice.com 由于肿瘤复发大多在相对早期阶段(最初几年内),大多数患者应每 6 至 12 个月随访一次。对于治疗后有并发症的患者(例如下丘脑综合征、癫痫发作、认知障碍),应增加随访频次。患者最好能得到包括儿科医师、内科医师/初级医疗卫生内科医师、内分泌科医师、眼科医师、肿瘤放疗科医师以及神经外科医师等多学科团队的治疗。由于患者病情涉及多学科,各方面的协调具有挑战性,所以此类患者最好在三级医学中心进行治疗。由于治疗方案过于琐碎和复杂,患者及家属最好有固定的联络人员(医师或护士)。简单、直接的交流沟通联系方式能够使患者及家属感受到诊疗的连续,并且能够在复杂条件下改善诊疗。