de Bataille Caroline, Caunes-Hilary Nathalie, Robello Aurélie, Bétancourt Sabine, Vigarios Emmanuelle, Maret Delphine
Département de Soins de Support, IUCT Oncopole-Institut Claudius Regaud, Toulouse, France.
Département Consultations, IUCT Oncopole-Institut Claudius Regaud, Toulouse, France.
J Cancer Educ. 2025 Sep 1. doi: 10.1007/s13187-025-02716-w.
Head and neck cancer treatments, particularly radiotherapy, cause significant oral toxicities that profoundly impact patients' quality of life, including salivary modifications, swallowing disorders, and the risk of osteoradionecrosis. While therapeutic patient education (TPE) programs exist for various chronic conditions, there remains a notable gap in specific programs addressing oral complications in head and neck cancer patients. This article describes the development and implementation of the innovative TPE program "l'O à la bouche" at a French cancer center, specifically designed for head and neck cancer patients experiencing post-treatment oral toxicities. A multidisciplinary working group was established, including ENT surgeons, speech-language pathologists, dietitians, radiotherapy technicians, nurses, dentists, psychologists, and patient partners. The program development followed a structured timeline from February 2020 to June 2021. The program comprises four complementary workshops addressing oral physiology modifications, safety and self-monitoring for aspiration risks, practical self-care skills, and psychosocial rehabilitation. The program obtained official authorization in December 2020 and began implementation in June 2021, with stable activity of 12 workshops annually, accommodating 5 to 8 patients per workshop. This initiative addresses a previously unmet national need, as no equivalent TPE programs existed specifically targeting salivary modifications and their oral consequences in head and neck cancer patients. The strong involvement of patient partners throughout all development phases ensures clinical relevance and patient-centered care. This program serves as a model for specialized therapeutic education that can improve patient self-management skills, enhance treatment adherence, and ultimately optimize quality of life through targeted patient education interventions.
头颈癌治疗，尤其是放射治疗，会导致严重的口腔毒性，对患者的生活质量产生深远影响，包括唾液改变、吞咽障碍以及放射性骨坏死风险。虽然针对各种慢性病存在治疗性患者教育（TPE）项目，但在针对头颈癌患者口腔并发症的特定项目方面仍存在显著差距。本文描述了法国一家癌症中心创新的TPE项目“l'O à la bouche”的开发与实施，该项目专门为经历治疗后口腔毒性的头颈癌患者设计。成立了一个多学科工作组，成员包括耳鼻喉科外科医生、言语病理学家、营养师、放疗技师、护士、牙医、心理学家和患者家属。该项目的开发遵循了从2020年2月到2021年6月的结构化时间表。该项目包括四个互补的工作坊，分别涉及口腔生理改变、误吸风险的安全与自我监测、实用的自我护理技能以及心理社会康复。该项目于2020年12月获得官方授权，并于2021年6月开始实施，每年稳定开展12个工作坊，每个工作坊容纳5至8名患者。这一举措满足了此前未被满足的国家需求，因为此前不存在专门针对头颈癌患者唾液改变及其口腔后果的类似TPE项目。患者家属在所有开发阶段的大力参与确保了临床相关性和以患者为中心的护理。该项目作为专业治疗教育的典范，可以提高患者的自我管理技能，增强治疗依从性，并最终通过有针对性的患者教育干预优化生活质量。
