Waisbren S E, Rokni H, Bailey I, Rohr F, Brown T, Warner-Rogers J
Clinical Genetics Program, Children's Hospital, Boston, Massachusetts, USA.
J Inherit Metab Dis. 1997 Mar;20(1):21-7. doi: 10.1023/A:1005349204797.
A Maternal PKU camp provided education and social support for 25 young women with phenylketonuria (PKU). Questionnaires were administered and blood samples were collected on the first and last days of camp to evaluate the psychological and medical impact of the programme. Long-term outcome was assessed through telephone interviews 7-14 months later. Knowledge of maternal PKU and the maternal PKU diet increased significantly. There was a significant increase in campers' ratings of the degree to which others supported the use of birth control to prevent late-treated pregnancies, although campers' comfort with contraception did not change. Mean blood phenylalanine concentrations were significantly reduced by 37% during camp and by 20% at follow-up. Ninety-six per cent of campers remained in contact with other campers after the summer. At follow-up, one pregnancy was reported, in which metabolic control was achieved prior to conception. Overall, attitudes about treatment and perceptions about ability to cope with PKU did not change to a significant degree. It is suggested that camps may be most successful in changing both behaviour and attitudes if they actively involve the campers in food preparation, address the psychological meaning of food in our culture, and provide social support.
一个母性苯丙酮尿症营地为25名患有苯丙酮尿症（PKU）的年轻女性提供了教育和社会支持。在营地的第一天和最后一天发放问卷并采集血样，以评估该项目对心理和医学方面的影响。7至14个月后通过电话访谈评估长期结果。关于母性苯丙酮尿症和母性苯丙酮尿症饮食的知识显著增加。营员对他人支持使用节育措施以预防晚育妊娠程度的评分显著提高，尽管营员对避孕的接受程度没有改变。营地期间平均血苯丙氨酸浓度显著降低了37%，随访时降低了20%。96%的营员在夏天过后仍与其他营员保持联系。随访时报告了一例妊娠，妊娠前实现了代谢控制。总体而言，对治疗的态度和应对苯丙酮尿症能力的认知没有显著改变。有人认为，如果营地积极让营员参与食物准备、探讨食物在我们文化中的心理意义并提供社会支持，可能在改变行为和态度方面最为成功。
