Wytiaz Victoria, Wang Tianyi, Schuetze Scott, Francis-Levin Nina J, Chugh Rashmi
Division of Oncology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan, USA.
School of Medicine, University of Michigan, Ann Arbor, Michigan, USA.
Cancer Med. 2025 Aug;14(16):e71183. doi: 10.1002/cam4.71183.
Desmoid tumors are benign tumors without metastatic potential. While progression is rarely life-threatening, it is often life-affecting with significant morbidity. The rarity of desmoid tumors and the inability to accurately predict their natural history lead to challenges in developing treatment algorithms or formulaic discussions to address treatment options with patients.
To better understand this process, we performed a qualitative study of clinician documentation for patients with desmoid tumors to identify themes and areas for improvement.
An institutional database search was used to identify patients with desmoid tumors seen from 2018 to 2023. Documentation entries in the electronic health record (EHR) were reviewed, and passages pertaining to treatment were abstracted and explored using inductive thematic analysis.
Ninety-five patients were identified. Generated themes included (1) balancing uncertainty and ambiguity with hope, (2) empowerment through patient-initiated treatment discussions, (3) maintaining an active lifestyle and mitigating psychosocial distress, and (4) fostering longitudinal clinician-patient relationships and building trust.
The current analysis of documentation pertaining to treatment for patients with desmoid tumors provides insight into clinician-patient discussions and decisions in a real-world clinical setting. The emergent themes provide novel guidance and support for optimizing treatment discussions and decisions. More robust community peer support groups specific to patients with desmoid tumors and clinician "support groups" may provide a way for both patients and clinicians practicing in a disease state with uncertainty to share experiences and improve resilience. Developing treatment educational materials for patients and families and improving access to supportive psychosocial services may further enhance high-quality decision-making.
硬纤维瘤是无转移潜能的良性肿瘤。虽然其进展很少危及生命，但往往会对生活产生影响，导致严重的发病率。硬纤维瘤的罕见性以及无法准确预测其自然病程，给制定治疗方案或与患者进行公式化的治疗选择讨论带来了挑战。
为了更好地理解这一过程，我们对硬纤维瘤患者的临床医生记录进行了定性研究，以确定主题和改进领域。
通过机构数据库搜索，识别2018年至2023年期间就诊的硬纤维瘤患者。对电子健康记录（EHR）中的记录条目进行审查，提取与治疗相关的段落，并使用归纳主题分析法进行探讨。
共识别出95例患者。产生的主题包括：（1）在不确定性和模糊性与希望之间取得平衡；（2）通过患者发起的治疗讨论增强自主权；（3）保持积极的生活方式并减轻心理社会困扰；（4）培养长期的医患关系并建立信任。
目前对硬纤维瘤患者治疗记录的分析为现实临床环境中的医患讨论和决策提供了见解。新出现的主题为优化治疗讨论和决策提供了新颖的指导和支持。针对硬纤维瘤患者的更强大的社区同伴支持小组和临床医生“支持小组”，可能为在疾病状态不确定的情况下执业的患者和临床医生提供一种分享经验和提高恢复力的方式。为患者和家庭开发治疗教育材料并改善获得支持性心理社会服务的机会，可能会进一步提高高质量决策水平。
