Psychosocial neglect and the rise in psychosis among adults with sickle cell disease in Little Caribbean, NY

Background: There is a high prevalence of psychosocial neglect and rise in psychosis among sickle cell disease patients in NYC. There are studies that have shown the impact of psychosocial neglect which we’ve seen in the UK, Nigeria, and Jamaica. Psychosis is a mental disorder that impairs an individual’s sense of reality. Some symptoms of psychosis include and are not limited to hallucinations, delusions, incoherent speech, and agitation. Addressing social determinants of life such as education, employment, and family support is an integral part in the management of sickle cell disease. Whether acute or chronic, pain is a trademark of sickle cell disease. Pain is unpredictable and happens secondary to a vaso-occlusive crisis. In Brooklyn, NY, we often see how quantity and duration of pain crises are associated with decreased social functioning, physical activity, mobility, substance abuse, anxiety, depression, and now more than ever, psychosis. Overall, there is a very high correlation between psychosocial neglect, development of psychosis and poor prognosis in the management of sickle cell disease.

Methods: Ten participants (females 4, males 6) aged 18 years to 25 years old were were reviewed in a cross-sectional study along with our own experiences at NYPBMH. The evaluation of the prevalence of psychosocial neglect and observed patterns of psychosis that were under-recognized were evaluated and noted to negatively impact treatment plans, pain reduction, and mental health of patients. Questionnaires were used to collect sociodemographic and disease severity; psychosis was assessed within the first 24-48 hours of hospital admission as the pain burden would be the highest within that time frame.

Results: Males with sickle cell disease were more likely to develop substance abuse, anxiety, hostility, and psychosis compared to females. Males were reluctant to accepting the idea of how a mental health crisis leading to psychosis could often worsen their chronic pain and increase hospitalizations. Males were less likely to seek help or express their experiences of stigma and discrimination. Both males and females belonged in similar socioeconomic classes. Both males and females were not likely to follow up with appropriate out-patient specialties such as hematologists, primary care specialists, or psychiatrists.

Conclusions: This study concluded that there was a high prevalence of psychosocial neglect and the development of psychosis among adults with sickle cell between the ages of 18 years to 25 years in this NYC based study. Patients with a chronic, painful disease as we see in sickle cell disease have a higher risk of developing psychiatric conditions than the general population. Many studies have shown how depression correlates to a poor quality of life and higher usage of acute medical services. This study is the first to highlight psychosis as a major drive acknowledging how psychosocial neglect among sickle cell patients leads to a disproportionately high use of health care resources, highlights the public health disparities and the need for public health resources. More studies are needed to investigate how chronic opioid use, pain burden and psychiatric conditions impact one another.