Horick Nora K, Manful Adoma, Lowery Jan, Domchek Susan, Moorman Patricia, Griffin Constance, Visvanathan Kala, Isaacs Claudine, Kinney Anita Y, Finkelstein Dianne M
Massachusetts General Hospital Biostatistics Center, 50 Staniford St. Suite 560, Boston, MA, 02114, USA.
School of Public Health Department of Epidemiology, University of Colorado Denver, Denver, CO, USA.
J Cancer Surviv. 2017 Feb;11(1):158-165. doi: 10.1007/s11764-016-0573-0. Epub 2016 Oct 19.
Registries provide a unique tool for tracking quality of life in rare cancer survivors, whose survivorship experience is less known than for common cancers. This paper reports on these outcomes in 321 patients enrolled in the Rare Cancer Genetics Registry diagnosed with rare gastrointestinal, genitourinary, gynecologic, sarcoma, head/neck, or hematologic cancers.
Four outcomes were assessed, reflecting registrants' self-reported physical and mental health, psychological distress, and loneliness. Combining all patients into a single analysis, regression was used to evaluate the association between outcomes and socio-demographic and clinical factors.
Median time since diagnosis was 3 years (range 0-9); 69 % were no longer in treatment. Poorer physical health was reported in registrants who were older at diagnosis, unmarried, and still in treatment. Poorer mental status was associated with younger diagnosis age and unmarried status. Psychological distress varied by cancer type and was higher among currently treated and unmarried registrants. Greater loneliness was reported in registrants with gynecological cancers, and those who were less educated or unmarried. The physical and mental health profile of rare cancer survivors is similar to what is reported for common cancers.
Unmarried participants reported poorer outcomes on all measures of quality of life. Furthermore, physical and mental health were not significantly different by cancer type after adjustment for diagnosis age, whether currently in treatment and marital status. Thus, the combined analysis performed here is a useful way to analyze outcomes in less common diseases. Our findings could be valuable in guiding evaluation and intervention for issues impacting quality of life.
Rare cancer survivors, particularly those without spousal support, should be monitored for challenges to the physical as well as psychological aspects of quality of life.
登记处提供了一个独特的工具,用于跟踪罕见癌症幸存者的生活质量,他们的生存经历比常见癌症患者鲜为人知。本文报告了321名登记参加罕见癌症遗传学登记处的患者的这些结果,这些患者被诊断患有罕见的胃肠道、泌尿生殖系统、妇科、肉瘤、头颈部或血液系统癌症。
评估了四个结果,反映登记者自我报告的身心健康、心理困扰和孤独感。将所有患者合并进行单一分析,使用回归分析来评估结果与社会人口统计学和临床因素之间的关联。
自诊断以来的中位时间为3年(范围0 - 9年);69%的患者不再接受治疗。诊断时年龄较大、未婚且仍在接受治疗的登记者报告身体健康较差。精神状态较差与诊断年龄较小和未婚状态有关。心理困扰因癌症类型而异,在目前接受治疗和未婚的登记者中更高。妇科癌症患者、受教育程度较低或未婚的登记者报告的孤独感更强。罕见癌症幸存者的身心健康状况与常见癌症患者的报告相似。
未婚参与者在所有生活质量指标上报告的结果较差。此外,在调整诊断年龄、是否目前正在接受治疗和婚姻状况后,不同癌症类型的身心健康没有显著差异。因此,本文进行的综合分析是分析罕见疾病结果的一种有用方法。我们的研究结果对于指导影响生活质量问题的评估和干预可能具有重要价值。
罕见癌症幸存者,尤其是那些没有配偶支持的幸存者,应监测其生活质量在身体和心理方面面临的挑战。