Rosenkranz Joachim, Reichwald-Klugger Evelyn, Oh Jun, Turzer Martin, Mehls Otto, Schaefer Franz
Division of Pediatric Nephrology, University Children's Hospital, Im Neuenheimer Feld 150, 69120 Heidelberg, Germany.
Pediatr Nephrol. 2005 Sep;20(9):1288-94. doi: 10.1007/s00467-005-1952-3. Epub 2005 Jun 8.
Little information is available on vocational rehabilitation and satisfaction with the quality of life in adult patients with early onset of end-stage renal disease (ESRD). A sample of 39 patients (mean age =26.7+/-6, range, 18 to 43 years, n =13 on dialysis, n =26 transplanted successfully) were required to report data on their vocational qualification and employment, and their degree of general and health-related satisfaction with life was surveyed. Data on psychosocial rehabilitation were collected by a structured questionnaire, whereas satisfaction with the quality of life was assessed with the standardized "Questionnaire on Satisfaction in Life (FLZ)." Fifty-eight percent of the patients had left school with certificates equivalent to high school graduation, 87% had completed vocational training and 67% were in paid employment. Forty-nine percent lived on their own or with a partner and 72% fully or partly earned their own living. The mean general and health-related satisfaction with life is significantly reduced compared to the general population. The patients were least satisfied in the areas 'partnership/sexuality' and 'family life/offspring' in general, as well as 'physical condition' and 'ability to relax' within health-orientated satisfaction. Final mean body height was 167.6+/-11.9 (SDS -1.54+/-1.59) for male and 153.77+/-8.29 for female patients (SDS -1.58+/-1.54). Thirty-six percent reported to be dissatisfied with their present body height compared to 4% of age-matched healthy controls. Positive perception of quality of life was significantly correlated to satisfaction with adult height ( r =0.41, P =0.008). Vocational rehabilitation of adult patients with early onset of ESRD achieves lower values than among the general population, however, more favorable percentages than among young adult patients or patients with adult onset of ESRD. The patients' self-evaluation of both their general and health-related quality of life proves to be clearly muted, which is a clear indication of the physical and psychological strain of living with a chronic disease.
关于终末期肾病(ESRD)早发成年患者的职业康复及生活质量满意度的信息较少。选取了39例患者(平均年龄=26.7±6岁,范围18至43岁,13例接受透析,26例成功接受移植),要求他们报告职业资格和就业数据,并对其总体及与健康相关的生活满意度进行调查。通过结构化问卷收集心理社会康复数据,而生活质量满意度则用标准化的“生活满意度问卷(FLZ)”进行评估。58%的患者离校时拥有相当于高中毕业证书的证书,87%完成了职业培训,67%有带薪工作。49%的患者独自生活或与伴侣一起生活,72%完全或部分自给自足。与普通人群相比,患者总体及与健康相关的生活满意度显著降低。患者总体上对“伴侣关系/性行为”和“家庭生活/子女”领域以及健康导向满意度中的“身体状况”和“放松能力”最不满意。男性患者最终平均身高为167.6±11.9(标准差评分-1.54±1.59),女性患者为153.77±8.29(标准差评分-1.58±1.54)。36%的患者报告对自己目前的身高不满意,而年龄匹配的健康对照者中这一比例为4%。生活质量的积极认知与对成人身高的满意度显著相关(r=0.41,P=0.008)。ESRD早发成年患者的职业康复水平低于普通人群,但比年轻成年患者或ESRD成年发病患者的比例更有利。患者对其总体及与健康相关的生活质量的自我评价明显较低,这清楚地表明了慢性病患者所承受的身心压力。