Webinars

Sickle Cell Disease (SCD) affects approximately 100,000 Americans causing acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body. That makes consistent and regular appointments vital for people living with SCD.

People living with SCD and their families and family caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. One key strategy NICHQ has learned from patients, caregivers, and providers in interviews and webinars is that addressing the barriers to appointment attendance works better when providers partner with community-based organizations to communicate with patients.

This webinar – the third in its series – focuses on developing a strong relationship between SCD clinics and the CBOs supporting people living with SCD.  Forging shared provider/CBO strategies provides improved messages and supports to patients and families who may be struggling with barriers that health care systems don’t realize.

Webinar Objectives:

• Identify three of the common reasons for missed appointments for people living with SCD and their families
• Learn how providers and SCD CBOs can work together to address appointment challenges for people living with SCD
• Identify resources to forge or strengthen relationship between CBO and clinic
• Learn resources for providers, CBOs, patients and caregivers to improve conversations to resolve appointment barriers.

Audience: 

• All SCD stakeholders: advocates and community-based organizations, health professionals, and service providers, people living with SCD and their families
• Webinar content also will be useful to providers and CBOs that support any patient or caregivers who face barriers to healthcare appointment attendance.

Sickle Cell Disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. This inherited blood disorder may cause acute pain episodes, infection, and other serious health problems that can damage every organ in the body.

Too often, people living with SCD and their families and caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. In disseminating the study results, NICHQ interviewed patients, caregivers, and providers – and found that systemic and individual bias and racism contributed to poor patient/provider relationships, which in turn undermined solutions to appointment attendance problems. 

While the relationship between patients or caregivers and their providers is not the main problem, improving that partnership is a big part of the solution. In this interactive session, our panelists will model conversations among providers, families, and advocates about reasons for and solutions to missed SCD healthcare appointments. Using webinar interaction tools and polls, webinar participants will examine, dissect, and discuss what works and what doesn’t in these conversations.

Webinar Objectives:

• Identify three of the common reasons for missed appointments for people living with SCD and their families
• Learn three conversation strategies to improve appointment attendance
• Identify one immediate and one longer-term action to improve healthcare relationships

Audience: 

• SCD stakeholders: advocates and community-based organizations, health professionals, and service providers, people living with SCD and their families
• Any caregiver, provider, or advocate in children’s healthcare who experiences frustration with missed appointments
• Others who want to improve their conversations, their patient/provider relationships, and their appointment attendance

Sickle cell disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. The inherited blood disorder may cause acute pain episodes, infection and other serious health problems that can affect every organ in the body.

To optimize health outcomes, national guidelines recommend routine follow-up appointments every six months, and more frequently for patients on specific therapies or experiencing complications. Yet, a 2019 national study showed that a majority of patients, both children and adults, reported missing a clinic appointment. This means that a majority of patients with SCD may miss out on therapies that have the potential to improve their health and quality of life.

To better understand what's behind the high rate of missed appointments, NICHQ conducted a series of interviews with patients and providers. Now, we're inviting all SCD stakeholders—health professionals, service providers, patients, and families—to view this webinar where we'll share our findings and facilitate a discussion on change strategies. 

Webinar objectives:

• Share key takeaways from the national study on appointment attendance among patients with SCD
• Share findings from the stakeholder interviews, including common reasons behind missed appointments and suggestions for increasing appointment attendance
• Facilitate an interactive discussion on systems-, hospital- and individual-level opportunities to increase appointment attendance

Learn about the impact of the 2014-2017 Sickle Cell Disease Treatment Demonstration Program Webinar (SCDTDP), which marked the first time in U.S. history that improvements in SCD care were tackled on a large, regional and national scale.