Experience of Respect and Pain Management among Adult Patients with Sickle Cell Disease during Vaso-Occlusive Crisis.

BACKGROUND. Adults with sickle cell disease (SCD) have reported adversarial relationships with health professionals in qualitative studies, but there are no quantitative data. We sought to examine experiences of respect among patients with SCD seeking acute care for vaso-occlusive crisis (VOC), and to relate these experiences to quality of pain management.

METHODS. We surveyed 54 adult patients upon discharge from the Emergency Department (ED) at an urban academic medical center. We measured patient experience of respect using items from the Interpersonal Processes of Care Instrument and summed responses to form a ‘respect’ scale from 0–100 (alpha 0.89). We measured pain management quality by asking patients whether doctors and nurses brought them their pain medicines as soon as they needed them and changed their pain medicines if they were not working (‘all’ and ‘most’ of the time were considered favorable responses while ‘some’ or ‘none’ of the time were considered unfavorable).

RESULTS. Patients generally reported low levels of respect and poor pain management. A small proportion of patients reported (‘all of the time’) that doctors and nurses seemed to care about them as a person (19%), listened carefully to what they had to say (17%), and took their concerns seriously (13%). A substantial proportion reported (‘all, ‘most’ or ‘some of the time’) that their doctors and nurses had a negative attitude towards them (63%), made them feel inferior (74%), made them feel as if they weren’t welcome (65%) and behaved rudely towards them (50%). Only 34% of patients reported timely receipt of pain medication and 48% reported that ineffective medication was changed. Patient experience of respect and pain management quality were not significantly related to patient age, sex, or employment status; however patients seen more frequently in the ED reported less respect (mean respect scores 74.1, 62.7, and 54.6 for patients seen <5 times/year, 5–15 times/year, and >15 times per year respectively, p=0.04). Patients who experienced lower respect also reported poorer pain management quality. Compared to patients who reported timely receipt of and changes in ineffective medication, patients who reported delays in receipt and no change in ineffective medication had lower respect scores (mean 71.9 vs. 53.9, p=0.001 for timely vs. delayed; 65.6 vs. 53.7 for change vs. no change).

CONCLUSION. Interventions are needed to improve the experiences of adult patients with SCD who present to the ED with VOC. Further research is needed to determine the causes of poor experiences of respect and pain management, and to determine their further consequences.