Sickle cell disease patients with and without extremely high hospital use: pain, opioids, and coping.

CONTEXT: Patients with sickle cell disease (SCD) and extremely high hospital use (EHHU) encounter significant challenges in pain management because of opioid medication use for pain and providers' concerns about addiction. OBJECTIVES: To characterize engagement with the health care system surrounding opioid pain management among SCD patients with EHHU by comparing their experiences with low-hospital-using (LHU) patients and their medical providers' perspectives. METHODS: One-on-one, semistructured qualitative interviews with patients and medical providers were audiotaped and transcribed. Participants were eight SCD patients with EHHU; matched by age, gender, and hemoglobinopathy type with eight SCD patients with low hospital use; and five providers identified by patients with EHHU as important to their care. A multidisciplinary team conducted chart review, created narrative summaries from the interviews, and used qualitative software to code transcripts based on themes. RESULTS: High-hospital-using patients and LHU patients had similar descriptions of their experience of pain and pain management with opioids. Patients and medical providers shared concerns about addiction. LHU patients described themselves as allies using specific interpersonal and symptom-related strategies, whereas high-hospital-using patients took a defensive and reactive stance toward their providers, who were similarly defensive about their care. CONCLUSION: The prescription of opioid medications for SCD pain management exacerbates issues of distrust in the patient-provider relationship. Such issues dominate patient care in patients with EHHU. Patients with EHHU and providers may learn from the proactive nature of LHU patients' engagement with the health care system as further research and interventions are designed for EHHU.

"I'm talking about pain": sickle cell disease patients with extremely high hospital use.

BACKGROUND: 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. OBJECTIVE: 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. DESIGN: Qualitative study involving in-depth, open-ended interviews using a standardized interview guide. SETTING: A single urban academic medical center. PARTICIPANTS: 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. RESULTS: 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. CONCLUSIONS: 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.