ASCAT 2024 | The unmet needs of patients with SCD from a psychosocial perspective

There definitely are unmet needs in terms of psychosocial support for individuals with sickle cell disease and their families. During the COVID-19 pandemic, the recognition of the need for mental health services really came to the forefront, although there’s always been a need for mental health services but it just became very obvious during that period when so many were under stress or isolated or experiencing major traumas in their lives.

In the case of sickle cell disease, the disease itself is traumatizing in the sense that people experience severe pain from early on, they experience medical procedures, and young people may experience the loss of their friends to early preventable deaths. So there are tremendous needs from a psychosocial standpoint. Every comprehensive sickle cell center should have a social worker on staff and so that is really the first line in terms of addressing some of those psychosocial needs. But sometimes there are many concrete needs that people need as well, so that there are social drivers of health that can impact the coping with the disease and the disease itself and its manifestations. So social drivers are access to adequate finances, housing, food, education. And sometimes a social worker may be spending time on those concrete needs. So there’s a need for psychologists or mental health specialists who can actually provide the therapeutic support that’s really needed.

So again, there is a tremendous need from a psychosocial standpoint because of the many stressors associated with sickle cell disease. And not to mention that, again, in many cases it can be very stigmatizing, as well as patients may face discrimination and bias when they’re seeking relief from their pain. So i look forward to the day when there are psychologists or other mental health specialists that are embedded into every sickle cell team so that from the beginning when the parent brings a child in they understand that there may be particular things that you need to learn to cope with and so the therapist is a part of the team to help you learn coping strategies and should you have some event that is particularly stressful then they can be there as well to provide support and work with you in terms of particular therapeutic strategies such as cognitive behavioral therapy or problem solving therapy, teach mindfulness strategies and so on. So again there is a tremendous unmet need, it’s good that there’s a recognition of that and now we just need to bring more specialists in mental health onto the teams so that families and individuals affected by sickle cell disease can access those services.