Accumulating research highlights substantial psychosocial morbidity among individuals with sickle cell disease (SCD), underscoring the need for increased attention to appropriate screening and intervention for such concerns in SCD care.1,2
Along with issues including interpersonal challenges, substance use, stigmatization, and employment barriers, people with SCD are more likely to experience mental health disorders compared to individuals in the general population with similar demographics.1 For example, findings have shown that prevalence rates of anxiety and depression are 2 to 3 times higher among individuals with SCD compared to national averages.3
Despite the myriad challenges affecting this patient population, there is a dearth of psychosocial services in SCD care and a lack of adequate support for such services, according to a study presented at the ASH Annual Meeting 2025.4 The authors identified high-quality psychosocial care as an essential element in SCD management.
For an in-depth discussion regarding the state of psychosocial care for SCD patients and ongoing needs in this area, Hematology Advisor interviewed Marsha J. Treadwell, PhD, Professor in Residence in the department of pediatrics in the division of hematology at the University of California, San Francisco, and co-director of the UCSF Sickle Cell Center of Excellence.
Hematology Advisor: What are some of the most common psychosocial issues and associated risk factors affecting patients with SCD?
Dr Treadwell: Individuals, families, and communities affected by SCD are vulnerable to negative influences associated with the disease on their psychological health. Adding to the complexity, somatic symptoms such as fatigue and appetite and sleep disturbances may be associated with SCD itself.
Factors that exacerbate mental health symptoms are also impacted by SCD, so the relationship is often conceptualized as cyclical or bidirectional. More severe disease is often associated with more distress, while frequent pain is very often associated with emotional distress.5 Increased health care utilization can be stressful, particularly when opportunities to live daily life — ie, attend work, school, and special events — are missed.
A small number of individuals with SCD have experienced multiple traumas and experience the impacts of multiple social drivers of health, such as food and housing insecurities and poor access to basic education and health care.6
The experience of stigma also has a powerful negative influence on mental health and quality of life. Individuals with SCD may face allegations that they are drug-seeking when they are seeking relief from pain in acute health care settings.7
Risk factors that have been shown to increase vulnerability to SCD-related mental health challenges include negative thinking, such as catastrophizing and self-blame, and negative feelings such as guilt.8
Stressors operate cyclically to exacerbate complications of SCD, including pain, possibly driven by physiological arousal or dysregulation.9 There may be critical periods when experiences and exposures influence future physical and emotional health. Such a period in SCD is adolescence and young adulthood, with documented increases in morbidity, mortality, and acute health care utilization.10,11
Hematology Advisor: What is the current state of psychosocial care in SCD, and what are some of the most notable gaps in this area?
Dr Treadwell: Access to mental health support is challenging. Sickle cell comprehensive care programs are recognizing that an embedded mental health provider within teams is optimal, but this requires institutional support and the availability of such providers. About 70% of the SCD population are on Medicaid,12 which reimburses at a low rate for mental health services.
The embedded approach provides a foundation of health promotion and prevention by allowing for education and interventions to support well-being early, build trust, and provide opportunities for families to have successful interactions with a mental health provider, hopefully reducing stigma associated with accessing such services.
For example, our mental health providers at the UCSF Sickle Cell Center of Excellence provide psychoeducation and direct support about the many aspects of pain management including distraction, mindfulness, adequate sleep hygiene, hydration, and physical activity as tolerated across inpatient, outpatient, and community settings. As individuals experience more mental health symptoms, short-term, low-intensity services can be provided by the embedded mental health professionals or referrals made to the community. More severe symptoms require good connections with high-level community services.
Cognitive behavior therapy (CBT) has been shown to be more effective than other treatments, such as medication or placebo, for such conditions as depression, anxiety, insomnia, and pain for SCD as well as broader populations.13 CBT is a goal-oriented therapy that focuses on the interrelations between thoughts, feelings, and behaviors. Participants work with their therapist to identify unhelpful thoughts and behaviors and to consider how changing the way we think can shift how we feel and behave. Participation with support groups has been shown to be helpful.14
In the absence of adequate numbers of mental health providers in some communities such as rural ones, mental health interventions can be delivered remotely using apps, websites, and virtual reality. The Cognitive Behavioral Therapy and Real-Time Pain Management Intervention for Sickle Cell Via Mobile Applications (CaRISMA) trial (ClinicalTrials.gov Identifier: NCT04419168), which compared the effectiveness of 2 mobile phone delivered programs — CBT and psychoeducation — in reducing SCD pain symptoms, was just completed and analyses are underway.15
Digitally-based tools such as Calm and Headspace can increase access and real-time support, and these tools are cost-effective, but they are best utilized as adjuncts to working with a therapist. However, apps that include access to a human coach are recommended over chatbots, and privacy can be a concern.
There is often still stigma associated with seeking mental health care, so meeting individuals with SCD and their families where they are —for example, by using digitally based tools — is critical. Also notable are campaigns, such as those by the Sickle Cell Disease Association of America, that use trusted voices to promote the importance of mental health interventions. In addition, Cayenne Wellness Center offers remote access to therapists who have been educated about the particular mental health needs of warriors with SCD.
There is an urgent need to improve the transition from pediatric to adult care and from adolescence and adulthood for the SCD population. Mortality rises following adult care transfer, which is too often not to sickle cell specialists or to subspecialists with adequate interest in caring for the sickle cell population. Use of emergency and inpatient resources increases and may exacerbate disease complications, particularly in the absence of transfer within 6 months from pediatric to adult programs. Systems of inequities intensify, including structural and interpersonally-mediated racism and stigmatization.16
Hematology Advisor: What are key recommendations for clinicians regarding screening, treatment, and referral for psychosocial issues in patients with SCD?
Dr Treadwell: Annual screening for mental health disorders is recommended in the general population beginning at age 8 years for anxiety and age 12 years for depression, and these recommendations should be adhered to for the SCD population as well.17,18 Screening and assessment should use validated tools. Many measures from the Patient-Reported Outcomes Measurement Information System (PROMIS) are built into the electronic health record, as are such legacy measures as the Patient Health Questionnaire (PHQ) 2 or 9.19
Neuro-cognitive impairments have the potential for significant impact on mental health for individuals with SCD. They should be screened for such impairments and receive in-depth neuropsychological evaluations as needed, and interventions addressing any impairments should be identified and followed up on. The National Alliance of Sickle Cell Centers (NASCC) has convened a Neurocognitive Workgroup that will be publishing consensus guidelines on neurocognitive surveillance, screening, and assessment in SCD.20
Access to neuropsychological screening and evaluation is even more limited than mental health services across sickle cell comprehensive care centers, so it is important to rely on partnerships with schools, institutions of higher learning, and departments of vocational rehabilitation for follow-up as needed.
Hematology Advisor: What further measures are needed to improve psychosocial care for patients with SCD?
Dr Treadwell: Addressing mental health challenges and fostering psychological resilience in SCD could be addressed with a Special Initiative, similar to the World Health Organization (WHO) Special Initiative for Mental Health.21
The current landscape, in which access to disease-modifying and curative therapies is a focus, provides us with an opportunity to integrate mental health services into comprehensive sickle cell care as more attention and resources become available for the population. We can leverage recommendations that come out of NASCC in demanding true comprehensive care for our population with SCD. Advocacy is central to our work.
We all need a mindset of building resilience, recognizing that there will always be challenges to test and strengthen protective factors. This is known as stress-related growth.22 However, supporting individuals and families affected by SCD with mental health resources is not enough. Rather than relying on them to build resilience, we need to address systemic issues that continue to perpetuate inequities in funding and access to comprehensive care.
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I would like to see more sickle cell comprehensive care teams become trauma-informed, given how repeatedly traumatizing the health care system has been for too many individuals with SCD.
As sickle cell providers, it begins with us to recognize and address our own biases that could potentially traumatize our warriors and families. Our work needs to address the personal and interpersonal as well as institutional biases. The provision of mental health services for patients with SCD and their families must be responsive to culture and context.
I would like to see more sickle cell comprehensive care teams become trauma-informed, given how repeatedly traumatizing the health care system has been for too many individuals with SCD. Trauma-informed care involves a patient-centered framework that recognizes the widespread impact of trauma, identifies signs and symptoms, and responds by integrating trauma knowledge into policies and practices.23 The goal is to avoid re-traumatization and promote healing, safety, and engagement for everyone, not just those with a known trauma history.
In general, our comprehensive care teams need to be intentional about reinforcing the centrality of psychological well-being to sickle cell outcomes from the first visit.
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