Parental Preparedness for Late Effects and Long-Term Quality of Life in Survivors of Childhood Cancer
Parental Preparedness for Late Effects and Long-Term Quality of Life in Survivors of Childhood Cancer
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DOI：
10.1002/cncr.30092
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发表时间：
2016-08-15
期刊：
影响因子：
6.2
通讯作者：
Mack, Jennifer W.
中科院分区：
文献类型：
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作者：
Greenzang, Katie A.;Cronin, Angel M.;Mack, Jennifer W.
背景：癌症患儿的父母希望了解治疗的晚期效应。在目前的研究中，作者评估了父母在孩子确诊后至少5年对晚期效应的准备。方法：在2004年4月至2005年9月期间，在Dana-Farber/波士顿儿童癌症和血液疾病中心对所有符合条件的癌症儿童父母进行了一项横断面调查，诊断后1年内，并在至少5年后进行了随访问卷调查。研究结果：大约66%的儿童父母仍然活着，并且能够联系到他们，他们完成了后续调查问卷（138名父母中的91名）。大约77%的受访者（91名受访者中的70名）是无病幸存者的父母，23%（91名受访者中的21名）是复发性疾病儿童的父母。大多数父母认为他们为孩子的肿瘤治疗做好了充分的准备（87%），但很少有人为孩子未来经历的限制（70%;使用McNemar检验P= 0.003）或癌症后的生活（62%; P
BACKGROUND: Parents of children with cancer desire information regarding the late effects of treatment. In the current study, the authors assessed parents' preparedness for late effects at least 5 years after their child's diagnosis. METHODS: A cross-sectional survey was conducted of all eligible parents of children with cancer between April 2004 and September 2005 at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within 1 year of diagnosis, and a follow-up questionnaire was administered at least 5 years later. RESULTS: Approximately 66% of parents of children who were still living, and who were able to be contacted, completed the follow-up questionnaire (91 of 138 parents). Approximately 77% of respondents (70 of 91 respondents) were parents of disease-free survivors and 23% (21 of 91 respondents) were parents of children with recurrent disease. The majority of parents believed they were well prepared for their child's oncology treatment (87%), but fewer felt prepared for future limitations experienced by their children (70%; P=.003 using the McNemar test) or for life after cancer (62%; P