As a certified oncology social worker, I have had the opportunity to attend numerous conferences focused on education related to the psychosocial needs of patients with cancer. Working in small programs, however, the hematology population has also typically been included in my job responsibilities.

I have always been told by my [non-social work] managers that my oncology patients are my primary concern, and I automatically see them to complete a distress screen and address psychosocial needs. Hematology patients are seen when they request to see a social worker, and many of these patients do not understand that our services are available to them. A recent switch in employment has led me to be the primary social worker for a small inpatient and outpatient pediatric sickle cell program (in addition to my oncology duties). Working with this population has truly opened my eyes to the significant needs of patients with blood disorders.

In October 2017, I had the pleasure of attending the National Sickle Cell Disease Association of America (SCDAA) Convention in Atlanta, GA, which was truly one of the best educational experiences in my professional career. I hope this small review of that conference will encourage my fellow oncology social workers to continue to explore a variety of educational opportunities outside of the traditional oncology social work roles.

The annual SCDAA conference in October was an immersive experience, integrating educational sessions that would benefit patients, families, physicians, nurses, social workers and other healthcare professionals alike. The opening speaker used “slam” poetry to give a first-hand account of living with sickle cell disease. This presentation was truly an emotional account from a young survivor who views sickle cell disease as an abusive relationship that she will no longer let take over her life. She moved the audience, including myself, to tears. I genuinely feel that this account has opened my eyes (and heart) to the personalized struggle each of our sickle cell patients’ experiences.

Some of the educational highlights included discussion on the psychological treatment of chronic pain, including the use of cognitive behavioral therapy, acceptance and commitment therapy, and meditation programs to decrease pain and emotional suffering and increase quality of life for our patients with chronic sickle cell disease. What excited me most about these topics was that they were presented in conjunction with both psychosocial providers and physicians. The patients in attendance were very positive about the option to use these [nonmedical] methods to aid in coping with pain. In addition, there was the suggested use of new Apps—SickleBuddy, SIKL, sickleWell, some of which are involved in clinical trials testing—whose aim is to increase adherence to medications in the sickle cell population. In the months post conference, I have been lucky enough to implement some of these ideas in my adolescent population and have received positive feedback from the clients who were willing to try these different coping mechanisms.

One of the most eye-opening seminars focused on quality of life outcomes and measurements. Discussions regarding the importance of comprehensive distress screening in this population were extremely helpful to our team in determining how to assess these needs during a clinic setting. Measures that are validated for the sickle cell population include the Patient Reported Outcome Measure (PROM) and the Adult Sickle Cell Quality of Life Measure (ASCQ-Me). Research using these measures shows consistent results for poor quality of life outcomes in the sickle cell population. In addition, it is understood from these measures that the relative burden of sickle cell disease is more severe than an oncology diagnosis or cystic fibrosis. Research funding for treatments and cures for sickle cell disease is significantly less than both of these health conditions.  

While research is lacking for this particular hematology disorder, it was encouraging to see the strides that have been made in recent years in regard to advocacy efforts, implementing new standards of care and learning about new research. While attending grad school for social work, we were required to attend yearly immersion experiences to better familiarize ourselves with the struggles of a specific population. The SCDAA convention was a similar type of immersion experience. I left the conference with a better understanding of some of the emotional and professional struggles of the sickle cell population and their caregivers. I am happy to accept the hematology part of my job and hope that by expanding my knowledge base in this area I can truly make a difference to my patients.

So—with the New Year upon us, I challenge my fellow oncology social workers to continue to step outside their comfort zones by welcoming new opportunities to learn about hematology disorders so we may feel more comfortable supporting these patients in their time of need.