• Daniel Weisberg, Gabriela Balf-Soran, William Becker, Shan-Estelle Brown, and William Sledge.
• Department of Psychiatry, Yale University School of Medicine, New Haven, Connecticut, USA.
• J Hosp Med. 2013 Jan 1;8(1):42-6.

BackgroundA 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.ObjectiveTo 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.DesignQualitative study involving in-depth, open-ended interviews using a standardized interview guide.SettingA single urban academic medical center.ParticipantsEight 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.ResultsA 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.ConclusionsOur 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.Copyright © 2012 Society of Hospital Medicine.

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