Kirikkale University School of Medicine, Department of Pediatric Metabolic Diseases and Nutrition, Kirikkale, Turkey.
Pan Afr Med J. 2022 Apr 14;41:308. doi: 10.11604/pamj.2022.41.308.25936. eCollection 2022.
the management of phenylketonuria (PKU) is complex. Practical skills and knowledge of individuals taking care of PKU patients are important for treatment compliance. This study investigated parents´ knowledge about PKU and its affecting factors. The study group consisted of 62 parents of PKU patients.
data were collected using a ready-made questionnaire on sociodemographic characteristics, PKU and dietary treatment. Total knowledge score (KS) was calculated by giving 5 points for each correct answer.
the study included 34 mothers and 28 fathers; 90.3% of patients were diagnosed during the newborn screening program, 6.5% between ages 1 and 2, and 3.2% at age 6 or after. Among all, 38.7% presented to their follow-up appointments with their mothers, 61.3% with both their parents and none with their father alone. Mothers answered all questions more accurately than fathers. Mothers´ and fathers´ mean KSs were 73.97 ± 12.72 and 53.04 ± 22.25, respectively. The highest KS was obtained among parents whose children were 13 years of age or older.
the presence of another family member, parents´ education level, working status and professional qualifications, previous training on PKU and family´s economic status were the affecting factors. Creating a PKU dietary plan requires knowledge and diligence. Patients and their parents should be periodically informed about the disease and dietary treatment in order to increase their level of knowledge.
苯丙酮尿症（PKU）的管理较为复杂。照顾 PKU 患者的个体的实际技能和知识对于治疗依从性很重要。本研究调查了父母对 PKU 的了解及其影响因素。研究组由 62 名 PKU 患者的父母组成。
使用关于社会人口统计学特征、PKU 和饮食治疗的现成问卷收集数据。通过为每个正确答案给出 5 分来计算总知识得分（KS）。
该研究包括 34 位母亲和 28 位父亲；90.3%的患者在新生儿筛查计划中被诊断，6.5%在 1 至 2 岁之间，3.2%在 6 岁或 6 岁以上。在所有患者中，38.7%与母亲一起就诊，61.3%与父母双方一起就诊，无一人与父亲单独就诊。母亲比父亲回答所有问题都更准确。母亲和父亲的平均 KS 分别为 73.97 ± 12.72 和 53.04 ± 22.25。孩子年龄在 13 岁或以上的父母的 KS 最高。
另一位家庭成员的存在、父母的教育水平、工作状况和专业资格、以前的 PKU 培训以及家庭的经济状况是影响因素。制定 PKU 饮食计划需要知识和勤奋。为了提高患者及其父母的知识水平，应定期向他们通报有关疾病和饮食治疗的信息。
