Cancer Rehabilitation and Survivorship Program, Princess Margaret Cancer Centre, Toronto, Canada.
Department of Surgery, Division of Urology, University Health Network and University of Toronto, Toronto, Canada.
Support Care Cancer. 2019 Oct;27(10):3877-3885. doi: 10.1007/s00520-019-4649-z. Epub 2019 Feb 14.
To date, little research has examined the quality of life and cancer-associated needs of bladder cancer patients. The objective of the current study was to assess the quality of life (QoL), informational needs, and supportive care needs (SCN) in a large sample of muscle invasive (MIBC) and non-muscle invasive (NMIBC) bladder cancer survivors across the treatment trajectory (newly diagnosed and undergoing treatment, post-treatment follow-up, and treatment for advanced/recurrent disease).
Questionnaires were distributed to a convenience sample of patients registered with Bladder Cancer Canada, the Princess Margaret Cancer Centre, or The Ottawa Hospital. Eligibility criteria included being > 18 years of age, English-speaking, and diagnosed with bladder cancer. The questionnaire included an adapted tool to measure informational needs, and validated measures for QoL (Bladder Utility Symptom Scale, BUSS) and SCN (Cancer Survivors' Unmet Needs Measure, CaSUN). QoL scores and unmet needs were calculated and compared between disease groups and cancer trajectory groups.
Of the 1126 surveys distributed, 586 were completed (response = 52%). Mean age was 67.3 ± 10.2 years, and 401 participants (68.7%) were male. The mean QoL score (BUSS) for the sample was 78.1 ± 17.9 (median 81.7). Respondents with MIBC had significantly lower QoL scores compared to NMIBC. Further, scores differed across the cancer phase groups with the follow-up surveillance group having significantly higher QoL scores compared to the newly diagnosed and advance/recurrent disease groups. The ten most highly ranked informational needs were from the medical, physical, and practical domains. Eighty-eight percent (95% CI 85-91%) of respondents reported at least one SCN, with a median of 12. Over half of the participants (54%, 95% CI 49-59%) had at least one unmet need and 15% had ≥ 10 unmet needs. Newly diagnosed participants had the highest number of unmet needs.
We found that the number of unmet supportive care needs and quality of life differed across cancer trajectory and disease groups. Future efforts should focus on the development and evaluation of tailored resources and programs to address the needs of people diagnosed and treated for BC.
迄今为止，很少有研究调查膀胱癌患者的生活质量和与癌症相关的需求。本研究的目的是评估大量肌层浸润性（MIBC）和非肌层浸润性（NMIBC）膀胱癌幸存者在整个治疗轨迹（新诊断和接受治疗、治疗后随访以及治疗晚期/复发性疾病）中的生活质量（QoL）、信息需求和支持性护理需求（SCN）。
调查问卷分发给在膀胱癌加拿大、玛格丽特公主癌症中心或渥太华医院登记的便利样本患者。入选标准包括年龄>18 岁、英语流利、诊断为膀胱癌。问卷包括一个用于测量信息需求的改良工具，以及用于 QoL（膀胱功能症状量表，BUSS）和 SCN（癌症幸存者未满足需求量表，CaSUN）的验证测量。计算并比较了疾病组和癌症轨迹组之间的 QoL 评分和未满足的需求。
在分发的 1126 份调查中，有 586 份完成（应答率=52%）。平均年龄为 67.3±10.2 岁，401 名参与者（68.7%）为男性。样本的平均 QoL 评分（BUSS）为 78.1±17.9（中位数 81.7）。MIBC 患者的 QoL 评分明显低于 NMIBC 患者。此外，各癌症阶段组的评分不同，随访监测组的 QoL 评分明显高于新诊断组和晚期/复发病例组。排名前十的信息需求来自医疗、身体和实际领域。88%（95%CI 85-91%）的受访者报告至少有一项 SCN，中位数为 12 项。超过一半的参与者（54%，95%CI 49-59%）至少有一项未满足的需求，15%的参与者有≥10 项未满足的需求。新诊断的参与者有最多数量的未满足的需求。
我们发现，在癌症轨迹和疾病组之间，支持性护理未满足需求的数量和生活质量存在差异。未来的工作应侧重于开发和评估针对诊断和治疗 BC 人群的需求的定制资源和计划。
