Abstract：
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
目的：雄激素剥夺治疗（ADT）是晚期和转移性前列腺癌的基础治疗方法。真实世界和患者报告的对ADT对健康相关生活质量（HRQoL）的影响的见解以及在医疗机构中的沟通经验仍未得到充分探索。这项由患者组织发起的在线调查旨在评估这些方面。
方法：在2022年12月至2023年8月之间，患者组织ThinkBlueVlaanderen和AZSint-Jan医院（布鲁日，比利时）邀请接受ADT治疗的患者参加前瞻性，在线,横截面,患者报告的结果调查。人口统计,临床,HRQoL（事实和EPIC-26），收集了通信来源和信息模态数据。采用描述性统计和比较分析。
结果：共有276/312名（88.5%）参与患者在调查管理和完成时接受ADT，大多数人接受3个月的治疗方案。性HRQoL较低且分布狭窄（中位数（IQR）：16.7（16.7-16.7）），84%的患者患有勃起功能障碍(ED)。发现ED有问题的患者更有可能寻求药物治疗。荷尔蒙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。身体活跃的患者报告缺乏能量，但增加了潮热。在一致的FACT-G汇总分数内（中位数（IQR）：64.50（54.75-77.00）），注意到随着ADT延长，情绪健康得到改善。多学科沟通和多模式信息提供提高了患者满意度。
结论：患者组织发起的调查提供了真实世界和患者报告的见解。患者量身定制的HRQoL评估和纵向随访，身体活动,多学科和多模式沟通方法对于改善接受ADT的患者以患者为中心的护理是必要的。
方法：在2022年12月至2023年8月之间，患者组织ThinkBlueVlaanderen和AZSint-Jan医院（布鲁日，比利时）邀请接受ADT治疗的患者参加前瞻性，在线,横截面,患者报告的结果调查。人口统计,临床,HRQoL（事实和EPIC-26），收集了通信来源和信息模态数据。采用描述性统计和比较分析。
结果：共有276/312名（88.5%）参与患者在调查管理和完成时接受ADT，大多数人接受3个月的治疗方案。性HRQoL较低且分布狭窄（中位数（IQR）：16.7（16.7-16.7）），84%的患者患有勃起功能障碍(ED)。发现ED有问题的患者更有可能寻求药物治疗。荷尔蒙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。身体活跃的患者报告缺乏能量，但增加了潮热。在一致的FACT-G汇总分数内（中位数（IQR）：64.50（54.75-77.00）），注意到随着ADT延长，情绪健康得到改善。多学科沟通和多模式信息提供提高了患者满意度。
结论：患者组织发起的调查提供了真实世界和患者报告的见解。患者量身定制的HRQoL评估和纵向随访，身体活动,多学科和多模式沟通方法对于改善接受ADT的患者以患者为中心的护理是必要的。
