Department of Psychiatry, Yale University School of Medicine, New Haven, Connecticut, USA.
J Hosp Med. 2013 Jan;8(1):42-6. doi: 10.1002/jhm.1987. Epub 2012 Nov 20.
A small minority of sickle cell disease patients accounts for the majority of inpatient hospital days. Admitted as often as several times a month, over successive years, this cohort of patients has not been studied in depth despite their disproportionate contribution to inpatient hospital costs in sickle cell disease.
To characterize the subjective experience of extremely high hospital use in patients with sickle cell disease, and generate hypotheses about the antecedents and consequences of this phenomenon.
Qualitative study involving in-depth, open-ended interviews using a standardized interview guide.
A single urban academic medical center.
Eight individuals, of varying age and gender, identified as the sickle cell disease patients who are among the highest hospital use patients over a 3-year period.
A common narrative emerged from the interview transcripts. Participants were exposed to the hospital environment and intravenous (IV) opioids at a young age, and this exposure was associated with extremely high hospital use in adulthood, evident in descriptions of multiple dimensions of their lives: pain and opioid medication use, interpersonal relationships, and personal development.
Our results suggest a systematic, self-reinforcing process of isolation from mainstream society, support structures, and caregivers, based on increasing hospitalization, growing dependency on opioid medications, as well as missed developmental milestones. Further study and interventions should be geared towards breaking this spiraling cycle with long-term strategies in disease management and social integration.
少数镰状细胞病患者占住院患者的绝大多数。这些患者每月住院好几次，连续几年，尽管他们在镰状细胞病的住院费用中所占比例过高，但他们并没有得到深入研究。
描述镰状细胞病患者超高住院使用率的主观体验，并提出关于这种现象的发生原因和后果的假设。
采用标准化访谈指南进行深入的开放式定性研究。
单一城市学术医疗中心。
8 名参与者，年龄和性别各不相同，他们在 3 年期间被确定为住院使用率最高的镰状细胞病患者。
从访谈记录中出现了一个共同的叙述。参与者在年轻时就接触到医院环境和静脉内（IV）阿片类药物，这与成年后极高的住院使用率有关，表现在他们生活的多个方面：疼痛和阿片类药物的使用、人际关系和个人发展。
我们的结果表明，基于住院次数的增加、对阿片类药物的依赖性增加以及错过发展里程碑，存在一种系统的、自我强化的与主流社会、支持结构和照顾者隔离的过程。进一步的研究和干预措施应该针对打破这种螺旋式循环，制定长期的疾病管理和社会融合策略。
