Gumidyala Amitha P, Plevinsky Jill M, Poulopoulos Natasha, Kahn Stacy A, Walkiewicz Dorota, Greenley Rachel N
*Psychology Division, VA Palo Alto Health Care System, Palo Alto, California; †Department of Psychology, Rosalind Franklin University of Medicine and Science, North Chicago, Illinois; ‡Department of Pediatrics, Section of Pediatric Gastroenterology, Hepatology, and Nutrition, The University of Chicago, Chicago, Illinois; and §Department of Pediatric Gastroenterology, UW Health, American Family Children's Hospital, Madison, Wisconsin.
Inflamm Bowel Dis. 2017 Jan;23(1):89-96. doi: 10.1097/MIB.0000000000000974.
Although adequate disease-related knowledge is recognized as an important component of transition readiness, little empirical attention has been directed toward understanding the levels of disease knowledge of adolescents and young adults (AYAs) with inflammatory bowel diseases (IBDs) or factors associated with higher levels of knowledge. This study described disease knowledge in a sample of AYAs with IBDs and examined individual, family, and patient-provider relationship factors associated with higher knowledge.
Seventy-five AYAs (ages 16-20) and their parents participated. AYAs and parents reported on demographics, parent autonomy granting behaviors, health care satisfaction, patient-provider transition-related communication, and disease knowledge. AYAs self-reported on disease self-efficacy. Disease information was abstracted from the medical record.
On average, AYAs answered 8.20 (SD = 1.75) of 12 knowledge questions correctly. Over 85% of AYAs correctly identified their type of IBD, number and type of IBD-related surgeries, and name of their current IBD medical provider. In contrast, knowledge about frequency of medication refills, effects of drugs and alcohol on IBD, and number to call to schedule medical appointments was suboptimal (i.e., 50% or fewer provided a correct response). Older AYA age, greater AYA health care satisfaction, higher AYA self-efficacy, and more frequent patient-provider transition-related communication were each associated with higher IBD-related knowledge.
To promote disease knowledge, providers should foster AYA self-efficacy by encouraging age-appropriate involvement in IBD management and make discussion of transition-related issues a priority during clinical appointments. Moreover, fostering collaborative and positive relationships with patients will improve satisfaction and may also enhance knowledge.
尽管充分的疾病相关知识被认为是准备好过渡到成年期的一个重要组成部分，但很少有实证研究关注炎症性肠病（IBD）青少年和青年（AYA）的疾病知识水平或与更高知识水平相关的因素。本研究描述了患有IBD的AYA样本中的疾病知识，并研究了与更高知识水平相关的个人、家庭及医患关系因素。
75名年龄在16至20岁之间的AYA及其父母参与了研究。AYA和父母报告了人口统计学信息、父母给予自主权的行为、医疗保健满意度、与医患过渡相关的沟通以及疾病知识。AYA自我报告了疾病自我效能感。疾病信息从病历中提取。
平均而言，AYA在12个知识问题中正确回答了8.20个（标准差 = 1.75）。超过85%的AYA正确识别了他们的IBD类型、IBD相关手术的数量和类型以及他们当前IBD医疗服务提供者的姓名。相比之下，关于药物 refill频率、药物和酒精对IBD的影响以及预约医疗的联系电话等方面的知识并不理想（即50%或更少的人回答正确）。年龄较大的AYA、更高的AYA医疗保健满意度、更高的AYA自我效能感以及更频繁的与医患过渡相关的沟通均与更高的IBD相关知识相关。
为了促进疾病知识，医疗服务提供者应通过鼓励适合年龄的IBD管理参与来增强AYA的自我效能感，并在临床预约期间将与过渡相关问题的讨论作为优先事项。此外，与患者建立协作和积极的关系将提高满意度，也可能增强知识。
