Department of Human Structure and Repair, Ghent University, Ghent, Belgium.
Department of Urology, AZ Sint-Jan Hospital, Brugge, Belgium.
Qual Life Res. 2024 Sep;33(9):2553-2562. doi: 10.1007/s11136-024-03712-1. Epub 2024 Jun 19.
Androgen deprivation therapy (ADT) is a cornerstone treatment for advanced and metastatic prostate cancer. Real-world and patient-reported insights into ADT's impact on health-related quality of life (HRQoL) and communication experiences in healthcare settings remain underexplored. This patient organisation-initiated online survey aimed to assess these aspects.
Between December 2022 and August 2023, the patient organisation Think Blue Vlaanderen and the AZ Sint-Jan Hospital (Bruges, Belgium) invited ADT-treated patients to participate in a prospective, online, cross-sectional, patient-reported outcome survey. Demographic, clinical, HRQoL (FACT and EPIC-26), communication sources and information modality data were collected. Descriptive statistics and comparative analyses were applied.
A total of 276/312 (88.5%) participating patients were on ADT at time of survey administration and completion, with the majority receiving a 3-monthly regimen. Sexual HRQoL was low and narrowly distributed (median (IQR): 16.7 (16.7-16.7)), with 84% of patients having erectile dysfunction (ED). Patients finding their ED problematic were more likely to seek pharmaceutical treatment. Hormonal HRQoL was widely distributed (median (IQR): 65 (45-85)), which improved with prolonged ADT duration. Physically active patients reported less lack of energy, but increased hot flashes. Within consistent FACT-G summary scores (median (IQR): 64.50 (54.75-77.00)), improved emotional wellbeing with prolonged ADT was noted. Multidisciplinary communication and multimodal information provision improved patient satisfaction.
Patient organisation-initiated surveys offer real-world and patient-reported insights. Patient-tailored HRQoL assessments and longitudinal follow-up, physical activity, and multidisciplinary and multimodal communication approaches are warranted to improve patient-centred care in patients receiving ADT.
雄激素剥夺疗法（ADT）是治疗晚期和转移性前列腺癌的基石。在真实世界和患者报告中，ADT 对健康相关生活质量（HRQoL）的影响以及在医疗保健环境中的沟通体验仍然没有得到充分的探索。本项由患者组织发起的在线调查旨在评估这些方面。
2022 年 12 月至 2023 年 8 月，患者组织 Think Blue Vlaanderen 和 AZ Sint-Jan 医院（布鲁日，比利时）邀请接受 ADT 治疗的患者参与前瞻性、在线、横断面、患者报告结局调查。收集了人口统计学、临床、HRQoL（FACT 和 EPIC-26）、沟通来源和信息模式数据。应用描述性统计和比较分析。
共有 276/312（88.5%）参与调查的患者在调查管理和完成时正在接受 ADT，其中大多数患者接受的是每 3 个月一次的方案。性 HRQoL 较低且分布狭窄（中位数（IQR）：16.7（16.7-16.7）），84%的患者有勃起功能障碍（ED）。认为 ED 有问题的患者更有可能寻求药物治疗。激素 HRQoL 分布广泛（中位数（IQR）：65（45-85）），随着 ADT 持续时间的延长而改善。积极运动的患者报告乏力减少，但潮热增加。在一致的 FACT-G 综合评分（中位数（IQR）：64.50（54.75-77.00））中，随着 ADT 的延长，情绪健康状况得到改善。多学科沟通和多模式信息提供提高了患者满意度。
患者组织发起的调查提供了真实世界和患者报告的见解。需要对患者进行 HRQoL 评估和纵向随访、开展体育活动以及采取多学科和多模式沟通方法，以改善接受 ADT 治疗的患者的以患者为中心的护理。
