Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey.

Greatest Challenges of Rectal Cancer Survivors: Results of a Population-Based Survey.
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DOI:
10.1097/dcr.0000000000000695
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发表时间:
2016-11
影响因子:
3.9
通讯作者:
Krouse RS
Krouse RS
中科院分区:
医学2区
文献类型:
--
作者:
McMullen CK;Bulkley JE;Altschuler A;Wendel CS;Grant M;Hornbrook MC;Sun V;Krouse RS

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明确癌症幸存者的优先事项对于满足癌症幸存者亚群体的特定需求至关重要。描述长期直肠癌幸存者与治疗相关的最大挑战。观察性研究与横断面调查。 Kaiser Permanente、北加州和西北健康计划的成员。一项调查邮寄给接受过吻合术、临时造口术或永久造口术的长期(诊断后≥5年)直肠癌幸存者。关于与癌症手术相关的最大挑战的开放式问题。我们使用扎根理论方法对响应进行分类,并采用双重编码以确保可靠性。 Bonferroni 调整的 X2 值用于评估每个响应类别中提到挑战的亚组比例的差异。调查完成率为61%(577/953); 76% (440/577) 的参与者回答了最具挑战性的问题。受访者面临的最大挑战是肠道/造口管理(44%)、负面心理社会影响(37%)、治疗的后期影响(21%)、合并症和衰老(13%)、术后恢复(5%)和负面医疗保健经历(5%)。接受临时造口或吻合术的幸存者比接受永久造口术的幸存者更有可能报告后期影响(分别为p<0.0001和p=0.01)。与永久性造口术的幸存者相比,接受吻合术的幸存者报告负面心理社会影响的可能性较小(p = 0.0001)。我们的结果表明,无论造口状况如何,所有直肠癌幸存者都需要肠道/造口管理、心理社会服务和生存后期影响监测以及支持性护理服务。吻合术长期幸存者的观点揭示了治疗决策过程中可能无法预见的挑战。普遍性受到缺乏民族和种族多样性、未投保(不符合医疗保险资格的人群)和非英语参与者的限制。由于该调查是跨部门的,并且包括诊断后不同时间的受访者,因此我们无法充分解决随着时间的推移最大挑战的变化。
Eliciting cancer survivors’ priorities is essential to address the specific needs of cancer survivor subgroups. To describe long-term rectal cancer survivors’ greatest challenges related to treatment. Observational study with cross-sectional survey. Members of Kaiser Permanente, Northern California and Northwest health plans. A survey was mailed to long-term (≥5 years post diagnosis) rectal cancer survivors who had an anastomosis, temporary ostomy, or permanent ostomy. An open-ended question about the greatest challenge related to cancer surgery. We categorized responses using a grounded theory approach with double coding for reliability. Bonferroni-adjusted X2 values were used to assess differences in the proportions of subgroups who mentioned challenges within each response category. The survey completion rate was 61% (577/953); 76% (440/577) of participants responded to the greatest challenge question. Respondents’ greatest challenges were bowel/ostomy management (reported by 44%), negative psychosocial effects (37%), late effects of treatment (21%), comorbidities and aging (13%), postoperative recovery (5%), and negative health care experiences (5%). Survivors with temporary ostomy or anastomosis were more likely than survivors with permanent ostomy to report late effects (p<0.0001 and p=0.01, respectively). Survivors with anastomosis were less likely than survivors with permanent ostomy to report negative psychosocial impacts (p=0.0001). Our results reveal the need for bowel/ostomy management, psychosocial services and surveillance for late effects in survivorship and supportive care services for all rectal cancer survivors, regardless of ostomy status. The perspective of long-term survivors with anastomosis reveals challenges that may not be anticipated during treatment decision-making. Generalizability is restricted by the lack of ethnically and racially diverse, uninsured (non-Medicare-eligible population), and non-English-speaking participants. Because the survey was cross-sectional and included respondents at different times since diagnosis, we could not adequately address changes in the greatest challenges over time.