Community Needs Assessment
Thank you for being a part of the Needs Assessment!
In 2017-18, we surveyed and interviewed 58 people with sickle cell disease ages 15 – 48 years and 56 of their healthcare
providers and community leaders, all from Alameda, Contra Costa, Sacramento, San Francisco and Solano counties.
Our goal was to understand more about healthcare barriers for adolescents and adults with sickle cell disease, so that we
can work on making real and long lasting improvements.
Our goal to recruit 300 individuals with sickle cell disease residing in Northern California was achieved. We successfully enrolled 312 patients, and the entire registry has 2429 individuals throughout the country.
What we found . . .
84% of adolescents and adults surveyed said that they just tried to take care of their severe pain at home, rather than going to the emergency room at all.
Some Challenges Discussed:
- Pain, fatigue, emotional burden of sickle cell disease
- Bad experiences with the healthcare system
- Being accused of drug seeking
- Long waits in emergency departments
- Being questioned about pain level
- Feeling emergency providers do not really care
- Trouble finding knowledgeable or experienced providers for care
- Transportation, insurance, support systems
- Struggle finding places to go where they can learn how to stay well and to manage pain so that it does not interfere so
much with their daily life.
- Adolescents and adults were most comfortable with their sickle cell providers.
- Adolescents and adults with more confidence in their ability to manage their sickle cell disease had lower pain ratings.
- They want to take care of people with sickle cell disease.
- But they need access to guidelines for care and care coordinators who can help individuals with sickle cell disease deal
with insurance and transportation issues.
- Sickle cell and primary care providers were concerned that the behavioral and mental health needs of individuals with SCD
were not being met.
- Regular meetings and better paths of communication between sickle cell providers, primary care providers, emergency
department providers, and adolescents and adults with sickle cell disease in Northern California
- Educational opportunities for providers in the area, that includes patient presentations that can give the providers first
hand accounts of patients’ healthcare experiences and the impacts of those experiences on their lives
- Meetings with administrators and policy makers to strategically improve sickle cell care coordination
What you can do . . .
- Stay tuned for studies that will be rolled out in Northern California and around the U.S. to
1) improve emergency department care and
2) support providers and individuals with sickle cell disease in using
- Please be a part of our Registry, that tracks the health and healthcare of adolescents and adults with sickle cell disease
from around the U.S. The Registry will allow us to know how effective our strategies are.
We are designing interventions informed by the needs assessment that are focused on improving emergency department care, access to preventive care, and patient self-management. By working with the other sites within the Sickle Cell Disease Implementation Consortium, we will be able to track our intervention outcomes across one of the largest U.S. cohorts of youth and adults with sickle cell disease to date. The interventions will be set to launch in 2019.
For more information about the SCCCI, contact:
Marsha Treadwell, PhD firstname.lastname@example.org, (510) 428-3356
Olivia Chen email@example.com, (510) 428-3885 x2759
- Sickle Cell Community Advisory Council
Contact Name: Wanda Williams
Phone: (510) 888-4568
- Sickle Cell Anemia Awareness of San Francisco Foundation
Contact Name: NeDina Brocks-Capla
Phone: (415) 720-4458
- Sickle Cell Community Health Network
Contact Name: Mary Evans
Phone: (510) 717-6504
- Sickle Cell 101
Contact Name: Cassandra Trimnell
Phone: (415) 881-7101