Empowering Minds, Easing Pain: The Role of Talk Therapy in Sickle Cell Disease
Authors: Alan Sheinei , Fusisi Rania , Holley Donisha , Marti Sebasitan Mendez , Williams Emelia , Zik Chad , Ershler William B 
Published: June 2024

Presentation Date: 6/9/2024

Presentation Start Time: 3:15:00 PM

Background

Chronic pain and frequent hospitalizations contribute to the psychological burden experienced in sickle cell disease (SCD). In fact, there is a higher prevalence of mental health disorders, including anxiety and depression (up to 30%) amongst individuals with SCD compared to the general population. Mental health disorders can adversely affect medication adherence, healthcare utilization patterns, and the ability to cope with pain. As a result, individuals with SCD and co-existing mental health conditions may experience exacerbated symptoms and prolonged hospital stays, leading to a poorer overall prognosis. To date, there is a paucity in comprehensive and well conducted studies highlighting the role of talk therapy in SCD. Therefore, we are reporting our first-year experience in offering talk therapy to SCD patients in an effort to lobby for the integration of talk therapy into the multidisciplinary care. This is especially critical as we embark on a journey of gene therapy and the important role of psychotherapy.

Methods

We started a partnership with a talk therapy organization and provided valuable insights into sickle cell disease prior to patient enrollment. Patients who were seen in the clinic frequently and with high chronic pain, increased acute care utilization or suspected anxiety and depression were selected. Each patient received comprehensive education on the role of talk therapy. Prior to intake, our social worker assisted patients in completing intake paperwork and scheduling. Patients were offered subsidized 60-minute sessions for at least six sessions. It is important to note that we picked six sessions as we were not certain that patients would commit and attend regularly. Depression screening questionnaire, PHQ-9 was conducted prior to and after completion of talk therapy. We also reviewed each patient’s hospitalization and opioid requirements in the last 12 months as compared to the last three months of talk therapy enrollment via patient prescription monitoring program and electronic health record.

Results

Patients that were identified for talk therapy consisted of males and females with genotypes of Hb SS and SC, ages 20-50 years old. Based on funds, a total of 11 patients were referred. Of these 11 patients, nine have remained actively engaged, providing a retention rate of 82%. On average, the time between referral to initial visit was three days. As shown in Figure 1, average PHQ9 upon entry was 12 (moderate depression) and at the three-month mark, average PHQ 9 improved to 9 (mild depression range). Globally, patients enrolled in talk therapy had better utilization of opioids for chronic pain (Figure 2) and less hospitalizations compared to prior to talk therapy (Figure 3).

Conclusions

While our observation is in its infancy, it strongly underscores the importance of recognizing and addressing mental health disorders in SCD through the provision of talk therapy. Initially, there was a prevailing misconception, even within our team, that SCD patients might exhibit reluctance towards talk therapy, attributing it to the profound impact of the disease and perceived lack of resources. Contrary to this assumption, our findings demonstrate that, when presented with the opportunity and support, SCD patients display a high level of receptivity to talk therapy, proving to be a crucial element in their overall care. This holds particular significance given the elevated prevalence of anxiety and depression in SCD patients. Although the literature suggests a prevalence of up to 30%, both we and other members of the SCD community believe this number to be significantly higher and influence disease management.

While this observation is in its infancy, it is evident that talk therapy leads to improved outcomes, including preventing the escalation of opioids and improving admissions. It provides patients with a platform to feel heard and equips them with tools to manage their disease. One notable instance during talk therapy involved a patient experiencing a tragic life event, who reported that being already enrolled in talk therapy significantly improved pain management compared to past situations where lengthy admission for pain crisis management would have been necessary.

By delving into the role of talk therapy as part of ongoing comprehensive care, SCD providers can formulate more personalized and efficacious interventions to enhance the holistic well-being of SCD patients. Future research endeavors should prioritize longitudinal studies and intervention trials to further validate the effectiveness of subsidized talk therapy within this population.

PHQ9 Scores Pre and Post Talk Therapy

Total Inpatient Hospital Days in Patients Enrolled in Talk Therapy