Laboratory of Clinical Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland.
Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, Maryland.
J Adolesc Health. 2017 Dec;61(6):716-721. doi: 10.1016/j.jadohealth.2017.06.017. Epub 2017 Sep 22.
Children with chronic illnesses are living longer, prompting health care provider attention to the transition from pediatric to adult care. Transition of care is successful when youth are independent in managing their health. The aims of this study were to identify the strengths and barriers to transition from pediatric to adult care and to determine strategies that could enhance the transition process.
A survey was administered via a structured interview to 33 young adult participants (19-27 years of age), living with chronic granulomatous disease all of whom transitioned from pediatric to adult care. The participants were predominately male (88%) and Caucasian (73%). Topics covered in the survey included understanding of disease and treatment, adherence, advance care planning, and barriers to transition. Data were analyzed using a conventional content analysis approach.
Seventy-six percent of the participants did not understand their disease process and only 50% understood their prophylactic medication regimen. Seventy-five percent of participants perceived their transition as uneventful. Ninety-four percent were independent in self-management skills such as making appointments and 90% in refilling prescriptions. More than half of the participants thought that the transition process needed improvement. Specific suggestions to create a practical approach to transition were offered.
Gaps in disease-related knowledge and transition planning were identified by adolescents and young adults living with chronic granulomatous disease. The findings suggest the need for enhancing the transition process utilizing interdisciplinary collaboration to develop a transition policy and program.
患有慢性病的儿童寿命延长，促使医疗保健提供者关注从儿科到成人护理的过渡。当年轻人能够独立管理自己的健康时，过渡护理才是成功的。本研究的目的是确定从儿科到成人护理过渡的优势和障碍，并确定可以增强过渡过程的策略。
通过结构访谈向 33 名年轻成年参与者（19-27 岁）进行了一项调查，这些参与者患有慢性肉芽肿病，均已从儿科过渡到成人护理。参与者主要为男性（88%）和白种人（73%）。调查涵盖的主题包括对疾病和治疗的理解、依从性、预先护理计划以及过渡障碍。使用常规内容分析方法对数据进行分析。
76%的参与者不了解自己的疾病过程，只有 50%的参与者了解自己的预防药物治疗方案。75%的参与者认为自己的过渡过程是顺利的。94%的参与者在预约和填写处方等自我管理技能方面独立，90%的参与者在填写处方方面独立。超过一半的参与者认为过渡过程需要改进。提出了一些具体的建议来创建一个实用的过渡方法。
患有慢性肉芽肿病的青少年和年轻人发现了与疾病相关的知识和过渡计划方面的差距。研究结果表明，需要利用跨学科合作来制定过渡政策和计划，以增强过渡过程。
