Schuett V E, Gurda R F, Brown E S
Am J Public Health. 1980 May;70(5):498-503. doi: 10.2105/ajph.70.5.498.
Marked diversity in policies and practices for discontinuation of the PKU diet in the U.S. was found in a nationwide survey. Seventy-two of the 78 identified clinical centers treating PKU provided data. No clinicians are currently considering diet discontinuation at ages earlier than their present policy or practice. A definite trend toward later discontinuation of diet was identified. A few clinicians have always recommended indefinite diet continuation while many clinics have experience with children ages 9--12 who have discontinued the diet. Clinics with seven or more children off diet in this age range are significantly more likely than smaller clinics to be considering a later age for diet discontinuation. There were 151 children approximately age 10 or older, who remain on a low phenylalanine diet. These children are followed by 29 clinics, but over one-half of them are followed by five clinics which have had long-standing policies of indefinite diet continuation. Factors associated with success in long-term management are a firm clinic policy supporting continued diet treatment; frequent, supportive contacts with the family; open discussion by staff with families and establishment of a trusting relationship; teaching children to accept responsibility for diet management from an early age.
在美国进行的一项全国性调查发现，苯丙酮尿症（PKU）饮食停用政策和实践存在显著差异。78家已确认的治疗PKU的临床中心中有72家提供了数据。目前没有临床医生考虑在比其现有政策或实践更早的年龄停用饮食。确定了饮食停用年龄有推迟的明确趋势。一些临床医生一直建议无限期持续饮食，而许多诊所对9至12岁已停用饮食的儿童有相关经验。在这个年龄范围内有7名或更多儿童停用饮食的诊所，比规模较小的诊所更有可能考虑推迟饮食停用年龄。有151名年龄约10岁及以上的儿童仍在食用低苯丙氨酸饮食。这些儿童由29家诊所跟踪随访，但其中一半以上由5家长期实行无限期持续饮食政策的诊所跟踪随访。与长期管理成功相关的因素包括：支持持续饮食治疗的明确诊所政策；与家庭频繁、支持性的联系；工作人员与家庭进行开放讨论并建立信任关系；从小教导儿童对饮食管理负责。
