Department of Medicine and Health, University of Manchester, Manchester, UK; Department of Surgery, The Christie NHS Foundation Trust, Manchester, UK.
Department of Surgery, The Christie NHS Foundation Trust, Manchester, UK.
Clin Genitourin Cancer. 2024 Oct;22(5):102168. doi: 10.1016/j.clgc.2024.102168. Epub 2024 Jul 20.
Penile cancer (PeCa) is a rare cancer with surgical options that affect patients' quality-of-life. Patient-reported outcome measures (PROMs) are uncommonly utilized in this cohort despite their several patient-centered benefits and there are recommendations to further digitalize PROMs. This prospective, population-based study aimed to report the development and feasibility of a novel electronic patient-reported outcome measures (ePROMs) questionnaire for patients with PeCa.
A novel ePROMs questionnaire was developed and sent to patients 3 days before outpatient clinic appointments. The questionnaire included up to 30 items on patient symptomology and quality-of-life, including a self-reported quality-of-life score (rated 0 being worst and 100 being best). Data were collected for patients followed up between August 2021 and May 2022. The primary feasibility outcomes, adherence and engagement, were measured by response and drop-out rates. Differences in responders and nonresponders were also ascertained. Secondary outcomes explored the clinical utility of the questionnaire. Responders were subcategorized into 3 groups: circumcision (Ci), partial penectomy (PP) or total penectomy (TP) and differences were analyzed. This study was approved by the local Trust Governance Panel, including for ethical considerations.
220 adult males were sent ePROMs questionnaires, and 141 (64%) responded initially. The mean dropout rate of subsequent questionnaires was 56%. The maximum number of questionnaires sent to and completed by a patient was 8 (n = 1). Nonresponders were older (P < .0001), with poorer performance status (P < .0001) and lower body mass index (P = .0288). TP patients reported the lowest median quality-of-life score 68.50 (8-99), followed by the Ci group (72.0, 37-94) and the PP group (76.0, 10-99).
Patients initially engaged and adhered to the ePROMs questionnaire but struggled to maintain this over time. Clinical data gathered by the questionnaire may be utilized to inform patient care. The questionnaire requires additional validation, research, and education.
阴茎癌（PeCa）是一种罕见的癌症，其治疗选择会影响患者的生活质量。尽管患者报告的结局测量（PROMs）具有多项以患者为中心的益处，但在该患者群体中并未得到广泛应用，并且有建议进一步实现 PROMs 的数字化。本前瞻性、基于人群的研究旨在报告一种新型电子患者报告结局测量（ePROMs）问卷在 PeCa 患者中的开发和可行性。
开发了一种新型的电子 PROMs 问卷，并在门诊预约前 3 天发送给患者。该问卷包含多达 30 个关于患者症状和生活质量的项目，包括自我报告的生活质量评分（评分 0 为最差，评分 100 为最佳）。本研究的数据收集对象为 2021 年 8 月至 2022 年 5 月期间接受随访的患者。主要可行性结局（依从性和参与度）通过应答率和失访率进行测量。还确定了应答者和非应答者之间的差异。次要结局探讨了问卷的临床实用性。将应答者分为 3 组：行包皮环切术（Ci）、行部分阴茎切除术（PP）或行全阴茎切除术（TP），并对这 3 组进行分析。本研究得到了当地信托管理小组的批准，包括伦理考虑。
共向 220 名成年男性发送了电子 PROMs 问卷，其中 141 名（64%）患者最初做出了应答。随后，问卷调查的平均失访率为 56%。一名患者最多可接收和完成 8 次问卷调查（n=1）。非应答者年龄更大（P<0.0001），功能状态更差（P<0.0001），体重指数更低（P=0.0288）。TP 患者报告的最低中位生活质量评分为 68.50（8-99），其次是 Ci 组（72.0，37-94）和 PP 组（76.0，10-99）。
患者最初参与并坚持使用电子 PROMs 问卷，但随着时间的推移，他们难以维持这种状态。问卷收集的临床数据可用于为患者护理提供信息。该问卷需要进一步验证、研究和教育。
