McMullen Carmit K, Kwan Marilyn L, Colwell Janice C, Munneke Julie R, Davis James V, Firemark Alison, Brooks Neon, Grant Marcia, Gilbert Scott M, Altschuler Andrea
Center for Health Research, Kaiser Permanente, Portland, OR, USA.
Division of Research, Kaiser Permanente, Oakland, CA, USA.
Bladder Cancer. 2019 Jan 31;5(1):51-61. doi: 10.3233/BLC-180202.
Bladder cancer patients who undergo cystectomy and urinary diversion face functional and quality-of-life challenges. Little is known about these patients' experiences during decision-making, surgery, and recovery, or how they vary by treatment setting.
To learn about patients' experiences with treatment choice, surgical care, and recovery across health settings. Understanding patient experiences is essential to closing care gaps and developing patient-reported measures.
We conducted focus groups with cystectomy patients and family caregivers at a large comprehensive health care system (N = 32 patients) and an NCI-designated comprehensive cancer center (N = 25 patients and 5 caregivers). Using standard qualitative methods, we identified themes that are not well-represented in existing research.
Across both systems, patients described variable experiences in decision-making about their cystectomy and urinary diversion. Some felt overwhelmed by information; others felt poorly informed. Many found self-care equipment challenging; many felt they knew little about what to expect regarding chemotherapy, recovery, and transitioning home. At times, health care personnel could not help manage patients' ostomies or catheterization equipment. Our study also contributes a grounded theoretical framework for describing meaningful domains of patient experience with cystectomy and urinary diversion. We identified a common trajectory that includes decision-making, surgery and post-operative recovery, mastery of self-care, and reintegration.
Patients with radical cystectomy and urinary diversion report a wide variety of experiences not captured by quantitative measures. These findings demonstrate that many cystectomy patients could benefit from additional post-operative support. We offer a framework to measure patient-centered domains in future research.
接受膀胱切除术和尿流改道的膀胱癌患者面临功能和生活质量方面的挑战。对于这些患者在决策、手术和康复过程中的经历，以及这些经历如何因治疗环境而异，我们了解甚少。
了解患者在不同医疗环境下对于治疗选择、手术护理和康复的经历。了解患者的经历对于缩小护理差距和制定患者报告的测量指标至关重要。
我们在一个大型综合医疗系统（32名患者）和一个美国国立癌症研究所指定的综合癌症中心（25名患者和5名护理人员）对膀胱切除术患者及其家庭护理人员进行了焦点小组访谈。我们采用标准的定性方法，确定现有研究中未充分体现的主题。
在这两个系统中，患者描述了在膀胱切除术和尿流改道决策过程中的不同经历。一些人被信息淹没；另一些人则觉得信息不足。许多人发现自我护理设备具有挑战性；许多人觉得他们对化疗、康复和回家过渡的预期知之甚少。有时，医护人员无法帮助管理患者的造口或导尿设备。我们的研究还为描述膀胱切除术和尿流改道患者经历的有意义领域贡献了一个扎根理论框架。我们确定了一个共同的轨迹，包括决策、手术和术后康复、自我护理掌握以及重新融入。
接受根治性膀胱切除术和尿流改道的患者报告了许多定量测量未涵盖的经历。这些发现表明，许多膀胱切除术患者可以从额外的术后支持中受益。我们提供了一个框架，以便在未来的研究中衡量以患者为中心的领域。
