中青年口腔癌患者旅程地图的构建与效果评价

doi:10.19438/j.cjoms.2026.03.012

中国口腔颌面外科杂志 ›› 2026, Vol. 24 ›› Issue (3): 280-287.doi: 10.19438/j.cjoms.2026.03.012

中青年口腔癌患者旅程地图的构建与效果评价

赵小妹, 侯黎莉, 胡龙威, 沈超群, 张爱琳, 郝桂华

上海交通大学医学院附属第九人民医院口腔颌面-头颈肿瘤科,上海交通大学口腔医学院, 国家口腔医学中心,口腔疾病国家临床医学研究中心,上海市口腔医学重点实验室, 上海市头颈肿瘤诊治和转化医学中心,上海 200011

收稿日期:2025-04-24 修回日期:2025-06-17 出版日期:2026-05-20 发布日期:2026-06-04
通讯作者: 郝桂华,E-mail: haoguihua666@126.com
作者简介:赵小妹（1973—）,女,主管护师,E-mail: zhxm58327107@126.com
基金资助:
上海申康医院发展中心局级项目（2024SKMR-30,202409-202609）; 上海市抗癌协会肿瘤护理专委会护理科研基金“护航”计划项目（SACA-HH202408）

Study on the journey map of young and middle-aged patients with oral cancer

Zhao Xiaomei, Hou Lili, Hu Longwei, Shen Chaoqun, Zhang Ailin, Hao Guihua

Department of Oromaxillofacial Head and Neck Oncology, Shanghai Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine; College of Stomatology, Shanghai Jiao Tong University; National Center for Stomatology; National Clinical Research Center for Oral Diseases; Shanghai Key Laboratory of Stomatology; Shanghai Center of Head and Neck Oncology Clinical and Translational Science. Shanghai 200011, China

Received:2025-04-24 Revised:2025-06-17 Online:2026-05-20 Published:2026-06-04

摘要/Abstract

摘要： 目的: 通过构建中青年口腔癌患者旅程地图,充分挖掘其癌症旅程中健康管理的任务、痛点及机会点,为优化全旅程照护提供参考。方法: 运用描述性质性研究方法,于2024年11月—2025年3月选取18例中青年口腔癌患者进行半结构化访谈,采用内容分析法对资料进行分析并绘制患者旅程地图。结果: 按诊疗时间轴,从任务、情绪、痛点和机会点4个维度,将中青年口腔癌患者的健康管理体验细分归纳为症状管理、功能恢复、康复锻炼及信息决策等42条主题,成功构建患者旅程地图。结论: 中青年口腔癌患者在诊疗过程中面临多方面挑战。未来可依据旅程地图,优化就诊流程、提升康复指导质量,同时加强信息沟通与共享,满足患者信息决策需求,从而提升中青年口腔癌患者全旅程照护体验,提高生活质量与康复效果。

关键词: 中青年, 口腔癌, 旅程地图, 生活质量

Abstract: PURPOSE: To construct a journey map of young and middle-aged patients with oral cancer, comprehensively identifying their health management tasks, pain points, and opportunities throughout the cancer journey, thereby providing a reference for optimizing their holistic care. METHODS: A descriptive qualitative research method was employed. From November 2024 to March 2025, semi-structured interviews were conducted with 18 young and middle-aged oral cancer patients. Content analysis was used to analyze the data and develop a patient journey map. RESULTS: According to the timeline of diagnosis and treatment, the health management experiences of young and middle-aged adult patients with oral cancer were subdivided and summarized into 42 themes from four dimensions: tasks, emotions, pain points, and opportunities. A patient journey map was constructed accordingly. CONCLUSIONS: Young and middle-aged oral cancer patients face multifaceted challenges during diagnosis and treatment. Future efforts should leverage the journey map to optimize clinical workflows, enhance the quality of rehabilitation guidance, and strengthen information communication and sharing to meet patients' decision-making needs. These measures can improve the holistic care experience, quality of life, and rehabilitation outcomes for this population.

Key words: Young adults, Oral cancer, Journey maps, Quality of life

中图分类号:

R739.8

赵小妹, 侯黎莉, 胡龙威, 沈超群, 张爱琳, 郝桂华. 中青年口腔癌患者旅程地图的构建与效果评价[J]. 中国口腔颌面外科杂志, 2026, 24(3): 280-287.

Zhao Xiaomei, Hou Lili, Hu Longwei, Shen Chaoqun, Zhang Ailin, Hao Guihua. Study on the journey map of young and middle-aged patients with oral cancer[J]. China J Oral Maxillofac Surg, 2026, 24(3): 280-287.

参考文献

[1] Bray F, Laversanne M, Sung H, et al.Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries[J]. CA Cancer J Clin, 2024, 74(3): 229-263.
[2] Chow LQM.Head and neck cancer[J]. N Engl J Med, 2020, 382(1): 60-72.
[3] Santoso AMM, Jansen F, De Vries R, et al.Prevalence of sleep disturbances among head and neck cancer patients: a systematic review and meta-analysis[J]. Sleep Med Rev, 2019, 47: 62-73.
[4] 戴梦峤, 廖晓琴. 患者旅程地图在慢性病照护中的研究进展[J]. 护理学杂志, 2024, 39(13): 121-125.
Dai MQ, Liao XQ.Advances in patient journey mapping in the care of patients with chronic diseases[J]. Journal of Nursing Science, 2024, 39(13): 121-125.
[5] Bulto LN, Davies E, Kelly J, et al.Patient journey mapping: emerging methods for understanding and improving patient experiences of health systems and services[J]. Eur J Cardiovasc Nurs, 2024, 23(4): 429-433.
[6] Davies EL, Bulto LN, Walsh A, et al.Reporting and conducting patient journey mapping research in healthcare: a scoping review[J]. J Adv Nurs, 2023, 79(1): 83-100.
[7] 翁亚娟, 蔡婷婷, 牛妞, 等. 中青年结直肠癌造口患者健康管理旅程地图的研究[J]. 中国护理管理, 2024, 24(6): 806-813.
Weng YJ, Cai TT, Niu N, et al.Study on the health management journey map of young and middle-aged colorectal cancer patients with colostomy[J]. Chinese Nursing Management, 2024, 24(6): 806-813.
[8] 吴美, 夏露, 张莉, 等. 加速康复外科模式下肺结节日间手术患者围手术期就医体验交互地图的研究[J]. 华西医学, 2025, 40(2): 276-281.
Wu M, Xia L, Zhang L, et al.Study on interactive journey map of perioperative medical experience of patients undergoing pulmonary nodule day surgery under enhanced recovery after surgery mode[J]. West China Medical Journal, 2025, 40(2): 276-281.
[9] 李雪, 秦林灿, 童博姗, 等. 转移性脊柱肿瘤患者治疗决策旅程地图的研究[J]. 护理学杂志, 2025, 40(3): 40-45.
Li X, Qin LC, Tong BS, et al.The treatment decision journey map in patients with metastatic spinal tumors[J]. Journal of Nursing Science, 2025, 40(3): 40-45.
[10] Barton E, Freeman T, Baum F, et al.The feasibility and potential use of case-tracked client journeys in primary healthcare: a pilot study[J]. BMJ Open, 2019, 9(5): e024419.
[11] 王文韬, 侯京豫, 钱鹏博, 等. 用户体验地图:图书馆用户体验馆员的新工具[J]. 图书情报知识, 2023, 40(5): 107-117.
Wang WT, Hou JY, Qian PB, et al.User experience map: a new tool for library user experience librarians[J]. Documentation,Information & Knowledge, 2023, 40(5): 107-117.
[12] Ly S, Runacres F, Poon P.Journey mapping as a novel approach to healthcare: a qualitative mixed methods study in palliative care[J]. BMC Health Serv Res, 2021, 21(1): 915-924.
[13] 季梦婷, 杨艳. 描述性质性研究方法学的综述[J]. 解放军护理杂志, 2018, 35(11): 32-35.
Ji MT, Yang Y.A review describing the methodology of qualitative research[J]. Nursing Journal of Chinese People's Liberation Army, 2018, 35(11): 32-35.
[14] Geiss C, Hoogland AI, Arredondo B, et al.Psychosocial consequences of head and neck cancer symptom burden after chemoradiation: a mixed-method study[J]. Support Care Cancer, 2024, 32(4): 254-269.
[15] Covrig VI, LazĂr DE, Costan VV, et al.The psychosocial role of body image in the quality of life of head and neck cancer patients. what does the future hold?-a review of the literature[J]. Medicina(Kaunas), 2021, 57(10): 1078.
[16] Wen L, Cui Y, Chen X, et al.Psychosocial adjustment and its influencing factors among head and neck cancer survivors after radiotherapy: a cross-sectional study[J]. Eur J Oncol Nurs, 2023, 63: 102274.
[17] Yuan L, Pan B, Wang W, et al.Prevalence and predictors of anxiety and depressive symptoms among patients diagnosed with oral cancer in China: a cross-sectional study[J]. BMC Psychiatry, 2020, 20(1): 394-408.
[18] 尹营营, 赵宽, 王彩莲, 等. 肿瘤患者心身症状临床管理中国专家共识[J]. 中国全科医学, 2025, 28(15): 1809-1822.
Yin YY, Zhao K, Wang CL, et al.Chinese expert consensus on clinical management of the psychosomatic symptoms in patients with cancer[J]. Chinese General Practice, 2025, 28(15): 1809-1822.
[19] Blumenstein KG, Brose A, Kemp C, et al.Effectiveness of cognitive behavioral therapy in improving functional health in cancer survivors: a systematic review and meta-analysis[J]. Crit Rev Oncol Hematol, 2022, 175: 103709.
[20] Mathew A, Doorenbos AZ, Jang MK, et al.Acceptance and commitment therapy in adult cancer survivors: a systematic review and conceptual model[J]. J Cancer Surviv, 2021, 15(3): 427-451.
[21] Laing EM, Heinen JM, Acebo De Arriba R, et al. Adaptations of interpersonal psychotherapy in psycho-oncology and its effects on distress, depression, and anxiety in patients with cancer: a systematic review[J]. Front Psychol, 2024, 15: 1367807.
[22] Zhang X, Liu D, Dong H, et al.Factors associated with delay in presentation among patients for oral cancer[J]. J Comp Effect Res, 2019, 8(12): 1003-1071.
[23] 杨元媛, 黄颉刚, 麦华明, 等. 口腔癌就医延迟现状及其影响因素研究进展[J]. 中国公共卫生, 2024, 40(11): 1401-1405.
Yang YY, Huang JG, Mai HM, et al.Delay in seeking medication for oral cancer and its influencing factors-a review of research progress[J]. Chinese Journal of Public Health, 2024, 40(11): 1401-1405.
[24] Khanagar SB, Naik S, Al Kheraif AA, et al.Application and performance of artificial intelligence technology in oral cancer diagnosis and prediction of prognosis: a systematic review[J]. Diagnostics(Basel), 2021, 11(6): 1004.
[25] 赵安玉琢, 石兴莲, 刘欢, 等. 人工智能在口腔癌早期诊断中的应用研究进展[J]. 中国口腔颌面外科杂志, 2024, 22(5): 493-498.
Zhao AYZ, Shi XL, Liu H, et al.Progress in the application of artificial intelligence in the early diagnosis of oral cancer[J]. China Journal of Oral and Maxillofacial Surgery, 2024, 22(5): 493-498.
[26] 谭琳, 钟晓莉, 吴际军, 等. 化疗期肿瘤患者全链式随访系统的开发及可行性研究[J]. 中华护理杂志, 2025, 60(2): 177-184.
Tan L, Zhong XL, Wu JJ, et al.Construction and feasibility of a full chain follow-up system for tumor patients at chemotherapy stage[J]. Chinese Journal of Nursing, 2025, 60(2): 177-184.
[27] 唐云皓, 汪歆, 柴伟, 等. 智能远程随访模式在髋膝关节置换术后应用的研究进展[J]. 中国修复重建外科杂志, 2025, 39(3): 375-383.
Tang YH, Wang X, Chai W, et al.Research progress in application of intelligent remote follow-up mode in hip and knee arthroplasty[J]. Chinese Journal of Reparative and Reconstructive Surgery, 2025, 39(3): 375-383.

中青年口腔癌患者旅程地图的构建与效果评价

Study on the journey map of young and middle-aged patients with oral cancer

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