Rogers S N, Al-Nakisbandi H, Dahill A, Lowe D
Faculty of Health and Social Care, Edge Hill University, Ormskirk, L39 4QP; Liverpool Head and Neck Centre, Liverpool University Hospital Aintree, Liverpool, UK.
Liverpool Head and Neck Centre, Liverpool University Hospital Aintree, Liverpool, UK.
Br J Oral Maxillofac Surg. 2021 Jan;59(1):86-90. doi: 10.1016/j.bjoms.2020.08.048. Epub 2020 Aug 20.
Patient-reported outcomes (PRO) are an important component of treatment evaluation. Typically they are completed by patients on paper, but through advances in technology such as mobile phone apps and websites, there is a great opportunity for electronic completion. It can be challenging, particularly at a regional or national level, to maintain accurate core clinical records on head and neck cancer (HNC) (baseline, recurrence, second primary, and further treatment), and these will influence PROs and the reporting of outcomes. In addition, with data security and confidentiality there is merit in undertaking anonymous surveys, but in this approach, there is a reliance on patients' recall. The aim of this study therefore was to compare updated hospital records with details completed by patients. In January 2019, 395 HNC patients who had been treated in 2015 and 2016 were sent a survey. They were asked to recall the clinical variables of gender, age at diagnosis, tumour site, tumour stage, and primary treatment, and these were analysed for agreement with the hospital records. The kappa statistic (KP) was used to measure the strength of agreement for categorical variables. There were 146 responders and one patient correctly stated that they did not have cancer. Five indicated further disease rather than primary cancer. Agreement between the hospital record and patients' recall was excellent for gender (KP=0.97) and age group (KP=0.92), very good for treatment (KP=0.79), and good for site of cancer (KP=0.61), but poor for stage of cancer (KP=0.18). In general, patients gave accurate accounts of these details apart from tumour stage.
患者报告结局（PRO）是治疗评估的重要组成部分。通常，患者通过纸质方式完成相关报告，但随着手机应用程序和网站等技术的进步，电子方式完成报告的机会很大。在区域或国家层面，维护头颈部癌（HNC）准确的核心临床记录（基线、复发、第二原发性肿瘤和进一步治疗情况）可能具有挑战性，而这些记录会影响PRO及结局报告。此外，出于数据安全和保密的考虑，进行匿名调查有其优点，但这种方法依赖患者的回忆。因此，本研究的目的是比较更新后的医院记录与患者填写的详细信息。2019年1月，向395名在2015年和2016年接受治疗的HNC患者发送了一份调查问卷。他们被要求回忆性别、诊断时年龄、肿瘤部位、肿瘤分期和初始治疗等临床变量，并对这些信息与医院记录进行一致性分析。kappa统计量（KP）用于衡量分类变量的一致性强度。共有146名受访者，其中一名患者正确表示自己没有患癌症。五名患者表示有其他疾病而非原发性癌症。医院记录与患者回忆之间在性别（KP = 0.97）和年龄组（KP = 0.92）方面一致性极佳，在治疗方面（KP = 0.79）非常好，在癌症部位方面（KP = 0.61）良好，但在癌症分期方面（KP = 0.18）较差。总体而言，除肿瘤分期外，患者对这些细节的描述较为准确。
