Abstract：
OBJECTIVE: We sought to explore the experiences and perceptions of the quality of life of adolescents with pediatric-onset multiple sclerosis and assess their readiness for academic, employment and/or health care-related transitions.
BACKGROUND: Adolescents with pediatric-onset multiple sclerosis face unique challenges in managing a chronic illness while navigating future scholastic, social and occupational goals. We conducted a qualitative study with in-depth, semi-structured interviews from July 2017 to March 2019. Adolescents with pediatric-onset multiple sclerosis were recruited from a pediatric neurology subspeciality practice until reaching data saturation. A total of 17 interviews were completed via telephone with participants ages 15 through 26.
RESULTS: Through content analysis of the interviews, we identified five major themes: (1) receiving a new diagnosis; (2) adapting to life with pediatric-onset multiple sclerosis; (3) evaluating education/career transition preparedness; (4) adjusting within family life and establishing support systems; and (5) assessing current medical services and preparedness for adult medical care.
CONCLUSIONS: Autonomy in health care management, adequate control of physical symptoms and sufficient family support impacted perceptions of quality of life. Implementing a dedicated transition visit, including the parent(s) of those with pediatric-onset multiple sclerosis, early in adolescence may provide an avenue for appropriate anticipatory guidance regarding available services, independent medical management and continuity of care.
BACKGROUND: Adolescents with pediatric-onset multiple sclerosis face unique challenges in managing a chronic illness while navigating future scholastic, social and occupational goals. We conducted a qualitative study with in-depth, semi-structured interviews from July 2017 to March 2019. Adolescents with pediatric-onset multiple sclerosis were recruited from a pediatric neurology subspeciality practice until reaching data saturation. A total of 17 interviews were completed via telephone with participants ages 15 through 26.
RESULTS: Through content analysis of the interviews, we identified five major themes: (1) receiving a new diagnosis; (2) adapting to life with pediatric-onset multiple sclerosis; (3) evaluating education/career transition preparedness; (4) adjusting within family life and establishing support systems; and (5) assessing current medical services and preparedness for adult medical care.
CONCLUSIONS: Autonomy in health care management, adequate control of physical symptoms and sufficient family support impacted perceptions of quality of life. Implementing a dedicated transition visit, including the parent(s) of those with pediatric-onset multiple sclerosis, early in adolescence may provide an avenue for appropriate anticipatory guidance regarding available services, independent medical management and continuity of care.
摘要：
目的：我们试图探索儿童多发性硬化症青少年生活质量的经验和看法，并评估他们的学术准备，就业和/或医疗保健相关的过渡。
背景：患有小儿多发性硬化症的青少年在管理慢性疾病的同时面临着独特的挑战，社会和职业目标。我们进行了深入的定性研究，2017年7月至2019年3月的半结构化访谈。从儿科神经病学亚专业实践中招募患有小儿多发性硬化症的青少年，直到达到数据饱和。通过电话与15至26岁的参与者进行了总共17次访谈。
结果：通过访谈的内容分析，我们确定了5个主要主题:(1)接受新诊断;(2)适应儿科发病型多发性硬化症患者的生活;(3)评估教育/职业过渡准备;(4)调整家庭生活和建立支持系统;(5)评估目前的医疗服务和成人医疗护理准备.
结论：医疗保健管理中的自治，身体症状的适当控制和足够的家庭支持会影响人们对生活质量的看法。实施专门的过渡访问,包括儿童多发性硬化症患者的父母，青春期早期可能为有关可用服务的适当预期指导提供途径，独立的医疗管理和护理的连续性。
背景：患有小儿多发性硬化症的青少年在管理慢性疾病的同时面临着独特的挑战，社会和职业目标。我们进行了深入的定性研究，2017年7月至2019年3月的半结构化访谈。从儿科神经病学亚专业实践中招募患有小儿多发性硬化症的青少年，直到达到数据饱和。通过电话与15至26岁的参与者进行了总共17次访谈。
结果：通过访谈的内容分析，我们确定了5个主要主题:(1)接受新诊断;(2)适应儿科发病型多发性硬化症患者的生活;(3)评估教育/职业过渡准备;(4)调整家庭生活和建立支持系统;(5)评估目前的医疗服务和成人医疗护理准备.
结论：医疗保健管理中的自治，身体症状的适当控制和足够的家庭支持会影响人们对生活质量的看法。实施专门的过渡访问,包括儿童多发性硬化症患者的父母，青春期早期可能为有关可用服务的适当预期指导提供途径，独立的医疗管理和护理的连续性。
