P1479: A BASELINE AUDIT OF THE USE A VALIDATED PSYCHOMETRIC TOOL (ASCQ-ME) TO ASSESS THE UNMET PSYCHOLOGICAL NEEDS OF A 2021 COHORT OF PATIENTS LIVING WITH SICKLE CELL

Abstract

Background: Adults living with inherited red cell disorders face myriad social and emotional challenges. While the literature highlights higher incidence rates of depression and anxiety in those with sickle cell disease (SCD) compared to the general population, granular data on the specific emotional experience of these people is missing, resulting in boundaries to accessing mental health care. New disease modifying drugs can now preferentially increase haemoglobin with relatively small impact on crisis frequency or reduce crisis frequency with minimum impact on haemoglobin. Current management of patients still focuses on pain crisis and crisis prevention. At the time of this study, in the UK, hydroxycarbamide and exchange transfusion were the only available disease modifying therapies. Aims: This study aimed to quantify psycho-social functioning and more accurately identify multifactorial level of need in patients living with SCD. Methods: The present study used a validated, detailed, psychometric test, the Adult Sickle Cell Questionnaire Measure (ASCQ-Me), to identify need in a population of adults living with SCD in Cambridge. Self-report ASCQ-Me data was collected from patients (N=59) first on how SCD has affected 5 domains of psych-social impact (emotional, pain, sleep, social, stiffness), and second about the frequency and severity of sickle crisis. Demographic data was recorded based on sickle genotype, age, sex, disease modification, whether patients had fatigue, and whether patients requested counselling at the time of annual review. Results: Patients who reported fatigue had significantly lower scores across all 5 domains of psychological impact than patients that did not report fatigue. However, there was no difference in Hb or HbF levels. When patients were split by disease modification (hydroxycarbamide, exchange transfusion, or no modification) there seemed to be a trend towards worsening psychological impact in all 5 domains for patients in the exchange group, with better outcomes from patients on hydroxycarbamide. There was no significant difference in psychological impact scores when patients were split by sex or sickle genotype. In particular, there was a trend towards higher frequency, but reduced intensity of pain crisis in patients with SC disease, but this did not reach significance. Patients who stated that they would like to be referred for psychological counselling also showed significantly worse scores across all 5 domains of psychological impact. Image:Summary/Conclusion: There is an unmet need in providing psychological support for patients with complex diseases like sickle cell. Our finding that the subjective feeling of fatigue is associated with a multidimensional lower performance in the ASCQ-Me, in addition to disease modifying therapy, psychological support will remain very important and should not be attributed to anaemia alone.