Morel P, Almond P S, Matas A J, Gillingham K J, Chau C, Brown A, Kashtan C E, Mauer S M, Chavers B, Nevins T E
Department of Surgery and Pediatrics, University of Minnesota Hospital and Clinic, Minneapolis 55455.
Transplantation. 1991 Jul;52(1):47-53. doi: 10.1097/00007890-199107000-00010.
Transplantation is the treatment of choice for children with end-stage renal disease. However, the long-term quality of life and socioprofessional outcome for those with successful transplants have not previously been reported. We studied these factors in patients transplanted when less than 18 years old who currently have greater than or equal to 10 years of graft function. A total of 57 questionnaires were sent out; 57 (100%) responded [24 female and 33 male patients; average (+/- SD) age at tx = 10 +/- 5 years (0.9-17.7); average f/u = 15.6 +/- 3 years (10-26); current age = 26 +/- 5 years (12-38); 26 had greater than 1 transplant]. Of the 57 respondents, 9 are less than 18 (all are in school); 48 are greater than or equal to 18 (7 in school, 37 employed, 4 unemployed); 12 are married, 1 engaged, and 2 divorced; and 9 have children. While in school, 43 (75%) had participated in sports, 37 (65%) in other extracurricular activities; 7 (12%) were A and 33 (58%) B students; 15 (26%) received awards or scholarships. For those working, the range of occupations is broad (average work week = 41 +/- 5 hr). Health-related absence from work has been nonexistent for 93%. Health is rated as good to excellent by 91% and fair by 9%. The future is regarded as hopeful or promising by 80%. Similarly, 89% are satisfied with life in general; 95% said health never or seldom interferes with family life; 95% feel health and drug side effects are of no or minor concern in sexual relationships. Only 3% feel health is a problem in maintaining a sexual relationship (41% are not sexually active). Only 4% stated that health often interferes with social life; 98% meet with friends on a regular basis; 76% are satisfied with personal relationships and 8% dissatisfied; 91% are satisfied with their ability to perform at work or school and 5% dissatisfied. Of note, 32% are dissatisfied with body appearance. Major concerns are short stature and brittle bones. Major suggestions include education/support groups to deal with teasing at school and peer problems. We conclude that transplanted children with long-term graft function have a favorable social and professional outcome. Overall, quality of life seems excellent.
肾移植是终末期肾病患儿的首选治疗方法。然而，此前尚未报道过肾移植成功患儿的长期生活质量和社会职业结局。我们对18岁以下接受移植且目前移植肾功能≥10年的患者的这些因素进行了研究。共发出57份问卷；57份（100%）得到回复[24例女性和33例男性患者；移植时平均（±标准差）年龄为10±5岁（0.9 - 17.7岁）；平均随访时间为15.6±3年（10 - 26年）；当前年龄为26±5岁（12 - 38岁）；26例接受过1次以上移植]。在57名受访者中，9名年龄小于18岁（均在上学）；48名年龄≥18岁（7名在上学，37名就业，4名失业）；12名已婚，1名订婚，2名离婚；9名有孩子。在上学期间，43名（75%）参加过体育运动，37名（65%）参加过其他课外活动；7名（12%）为A等生，33名（58%）为B等生；15名（26%）获得过奖项或奖学金。对于就业者，职业范围广泛（平均每周工作时长 = 41±5小时）。93%的人无因病缺勤情况。91%的人将健康状况评为良好至优秀，9%的人评为中等。80%的人认为未来充满希望或前景光明。同样，89%的人总体上对生活满意；95%的人表示健康从未或很少影响家庭生活；95%的人认为健康和药物副作用对性关系没有影响或影响很小。只有3%的人认为健康是维持性关系的问题（41%的人性生活不活跃）。只有4%的人表示健康经常影响社交生活；98%的人定期与朋友见面；76%的人对人际关系满意，8%的人不满意；91%的人对自己在工作或学校的表现能力满意，5%的人不满意。值得注意的是，32%的人对自己的外貌不满意。主要担忧是身材矮小和骨质疏松。主要建议包括设立教育/支持小组以应对在学校受到的嘲笑和同龄人问题。我们得出结论，具有长期移植肾功能的移植儿童具有良好的社会和职业结局。总体而言，生活质量似乎非常好。
