Health care preferences and priorities of adolescents with chronic illnesses
Health care preferences and priorities of adolescents with chronic illnesses
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DOI：
10.1542/peds.2003-1134-l
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发表时间：
2004-11-01
期刊：
影响因子：
8
通讯作者：
Slap, GB
中科院分区：
文献类型：
--
作者：
Britto, MT;DeVellis, RF;Slap, GB
背景。努力使患有慢性病的青少年的医疗保健更加以患者为中心，必须以了解青少年的偏好和优先事项为基础并采取明确的措施。目标。制定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、发育和健康因素。设计。混合方法问卷的开发和调查。设置。三级儿童医院的亚专科诊所。参与者。所有患有幼年类风湿性关节炎、镰状细胞病、炎症性肠病或囊性纤维化至少 2 年并在参与中心接受治疗的青少年（年龄：11-19 岁）都有资格参加，251 人中有 155 人（62%）这样做。参与者的平均年龄为 15.5 +/- 2.4 岁，其中 45% 为男性，75% 为白人。干预。无。主要成果指标。与护理质量相关的 65 个项目和与医患沟通方式相关的 17 个项目的评级。结果。根据焦点小组结果的定性分析设计了一份包含 82 个项目的调查问卷，其中包含 65 个青少年认为对医疗保健质量重要的李克特量表项目和 17 个与青少年沟通偏好相关的强制选择项目。在前 65 个项目中，与医生信任和尊重相关的问题组评分最高，为 5.24 +/- 0.62（共 6 分），其次是患者权力和控制（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自己沟通而不是与父母沟通，并且对于医生询问个人问题几乎持中立态度。结论。参与者将人际关怀的各个方面（尤其是诚实、对痛苦的关注以及与尊重相关的项目）评为在质量判断中最重要的方面。与之前大多数针对成年人的研究一样，护理的技术方面也得到了很高的评价，这表明青少年理解并重视护理的科学和人际方面。
Background. 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.Objective. 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.Design. Mixed-method questionnaire development and survey.Setting. Subspecialty clinics of a tertiary care children's hospital.Participants. 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.Intervention. None.Main Outcome Measures. Ratings of 65 items related to quality of care and 17 items related to physician-patient communication styles.Results. 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.Conclusions. 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.