Britto Maria T, DeVellis Robert F, Hornung Richard W, DeFriese Gordon H, Atherton Harry D, Slap Gail B
Division of Adolescent Medicine, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229-3039, USA.
Pediatrics. 2004 Nov;114(5):1272-80. doi: 10.1542/peds.2003-1134-L.
Efforts to make health care for adolescents with chronic illnesses more patient-centered must be grounded in an understanding and clear measures of adolescents' preferences and priorities.
To develop a measure of health care preferences of adolescents with chronic illnesses and to determine demographic, developmental, and health factors associated with adolescents' preferences.
Mixed-method questionnaire development and survey.
Subspecialty clinics of a tertiary care children's hospital.
All adolescents (age: 11-19 years) with juvenile rheumatoid arthritis, sickle cell disease, inflammatory bowel disease, or cystic fibrosis of at least 2-year duration who were being treated at the participating center were eligible to participate, and 155 of 251 did so (62%). The participants had a mean age of 15.5 +/- 2.4 years, 45% were male, and 75% were white.
None.
Ratings of 65 items related to quality of care and 17 items related to physician-patient communication styles.
An 82-item questionnaire, devised from qualitative analysis of focus group results, contained 65 Likert scale items that adolescents considered important for health care quality and 17 forced-choice items related to adolescents' preferences for communication. Among the first 65 items, the group of questions related to physician trust and respect had the highest rating of 5.24 +/- 0.62 of 6, followed by patient power and control (mean rating: 4.72 +/- 0.77) and then caring and closeness in the patient-doctor relationship (mean rating: 4.19 +/- 0.91). For the communication items, the adolescents, on average, preferred communication directly to them rather than to their parents and were nearly neutral regarding physicians' inquiries about personal issues.
Participants rated aspects of interpersonal care (especially honesty, attention to pain, and items related to respect) as most important in their judgments of quality. As in most previous studies of adults, technical aspects of care were also rated highly, suggesting that adolescents understand and value both scientific and interpersonal aspects of care.
要使针对患有慢性病的青少年的医疗保健更以患者为中心，必须基于对青少年偏好和优先事项的理解及明确衡量标准。
制定一项针对患有慢性病的青少年的医疗保健偏好衡量标准，并确定与青少年偏好相关的人口统计学、发育和健康因素。
混合方法问卷开发与调查。
一家三级护理儿童医院的专科诊所。
所有在参与中心接受治疗、患有青少年类风湿性关节炎、镰状细胞病、炎症性肠病或囊性纤维化且病程至少2年的青少年（年龄：11 - 19岁）均有资格参与，251名中有155名参与（62%）。参与者的平均年龄为15.5 ± 2.4岁，45%为男性，75%为白人。
无。
对65项与护理质量相关的项目以及17项与医患沟通方式相关的项目进行评分。
通过对焦点小组结果的定性分析设计出一份82项问卷，其中包含65项青少年认为对医疗保健质量很重要的李克特量表项目以及17项与青少年沟通偏好相关的强制选择项目。在前65项中，与医生信任和尊重相关的问题组评分最高，为6分中的5.24 ± 0.62分，其次是患者权力和控制权（平均评分：4.72 ± 0.77），然后是医患关系中的关怀和亲密程度（平均评分：4.19 ± 0.91）。对于沟通项目，青少年平均更喜欢直接与他们沟通而非与他们的父母沟通，并且对于医生询问个人问题几乎持中立态度。
参与者在判断质量时将人际护理方面（尤其是诚实、对疼痛的关注以及与尊重相关的项目）评为最重要。与以往大多数针对成年人的研究一样，护理的技术方面评分也很高，这表明青少年理解并重视护理的科学和人际方面。
