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  • Save the Date: Webinar 10

    Come hear lessons learned and recommendations stemming from the National Institute for Children’s Health Quality (NICHQ)-led Sickle Cell Disease Treatment Demonstration Program. The national program focused on improving the quality and access to care for patients with sickle cell disease. Wednesday, January 24, 2018 | 1:00 – 2:00 pm ET … more

  • Webinar 9

    Neuropathic pain: Can stress and pain itself cause a sickle crisis? by Dr. Thomas Coates. Tuesday, November 14, 2017, from 10-11:30 am PDT. Dr. Coates is the section head of Hematology in the division of Hematology Oncology at Children’s Hospital Los Angeles, and the University of Southern California. … more

Upcoming Events

Welcome to SCCCI

Community Needs Assessment

Through dialog and determination we’ll find a way.

Why:

People with sickle cell disease may have trouble receiving good care in emergency rooms and with finding health care providers who can help them prevent medical problems. We want to find out from you, and from your providers, how to work together so that you can live your best life possible.

What:

We recruited 55 youth and adults with sickle cell disease and 55 providers who were interviewed about their experiences with and concerns about sickle cell disease care. 55 youth and adults with sickle cell disease and 29 providers also completed needs assessment surveys. We are reviewing the results from these interviews and surveys and this information with help us in deciding about needed changes related to sickle cell care in our region.

Who:

We are looking for 15 – 45 year olds with any diagnosis of sickle cell disease in Alameda, Contra Costa, Sacramento, San Francisco and Solano counties.

When:

Stay tuned for the results from the needs assessment that will be posted here. We will also schedule a community meeting to review the results.

Signup for our research

SCCCI: 5 years, 5 counties, 3 phases.

Sickle Cell Care Coordination Initiative

Who we are …

The Sickle Cell Care Coordination Initiative (SCCCI) seeks to improve care provided to youth and adults with sickle cell disease in Northern California. We are one of 8 programs in the U.S. funded by the National Heart, Lung and Blood Institute (NHLBI) to use implementation science to improve outcomes for individuals with sickle cell disease between the ages of 15 and 45 years.

The SCCCI brings together experts in sickle cell disease clinical care and clinical research, health services research, implementation and participatory research and emergency medicine. Our core team also includes individuals with sickle cell disease, their family members and dedicated community members.

Our aims are …
  1. increase the number of youth and adults with sickle cell disease who receive preventive care;
  2. support providers so they increase their adherence with evidence based guidelines for sickle cell disease care; and
  3. support youth and adults with sickle cell disease to access needed resources within their communities to improve their quality of life and quality of care. Our primary goal is to decrease the preventable morbidity and mortality that this population is vulnerable to.

The work of the SCCCI will take place in Alameda, Contra Costa, Sacramento, San Francisco and Solano counties.

Sickle Cell Disease Patient Doctor Dialog
Sickle Cell Disease Nurse Patient Research
Why Implementation Science?

NHLBI made a commitment to funding the Sickle Cell Disease Implementation Consortium in response to evidence that only a fraction of discovery science reaches patients in clinical practice. Americans receive, on average, only half of recommended preventive, acute and long-term quality health care. There is no better example of this issue than sickle cell disease, where evidence based guidelines are greatly underutilized. As a result, adults with sickle cell disease experience high mortality, severe pain, progressive decline in functional status and lack of access to knowledgeable care. The barriers to care, on the parts of both patients with sickle cell disease and their providers, are poorly understood, although some patients face distrust and discrimination when they do try to seek care. Implementation science takes a “systems approach” to improve health outcomes, engaging multiple sectors and multiple modalities to define and prioritize health outcomes and care issues, and to identify barriers to care. The Sickle Cell Disease Implementation Consortium is the first research program to use implementation science to identify and address barriers to quality care in sickle cell disease.

What is the plan?

We conducted a needs-based community assessment of barriers to care for youth and adults with sickle cell disease. Participants were patients with sickle cell disease, the providers who care for them, directors of services where they seek care, and interested community members who had ideas about the needs of patients with sickle cell disease and how to address them. We selected providers and people with sickle cell disease to provide us with this information via focus group or individual interviews. We also asked providers and people with sickle cell disease to complete a survey about the issues.

Information from the needs assessment is informing the next phases of the SCCCI. We are creating a registry of youth and adults within our five county area in order to track inpatient, outpatient and emergency use; complications; and such factors linked with health as access to housing, education and good medical care. We are designing interventions informed by the needs assessment focused on improving the quality of acute and 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 registry is the next crucial step for the Sickle Cell Care Coordination Initiative. We are collecting information on symptoms, treatments, and concerns about medical care for youth and adults with sickle cell disease. This information will help us to see where improvements can be made in the medical care system, and with regard to community support, for sickle cell disease.

Signup for our research
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Knowledge and Action

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