Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
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Friday, October 12 • 4:30pm - 4:45pm
The Forgotten Vital Sign: Use of A Distress Thermometer with Children, Adolescents and Young Adults Diagnosed with Sickle Cell Disease

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Authors : Mrs. carla Jones- Atrium Health: Levine Children's Hospital, Mr. Kenneth Mitten- Levine Children's Hospital Charlotte, NC

Objective: Information from our pediatric sickle cell disease (SCD) clinic indicates that we have an average noncompliance rate for attendance of clinic appointments of 30%. Our objective was to determine barriers to clinic attendance and strategies to overcome these barriers to improve compliance for 1 month clinic appointments for pediatric patients (birth-21 years of age) with sickle cell disease (SCD) on hydroxyurea.
Method: Caregivers of Sickle Cell patients indicated via a survey 5 main barriers that prevented them from consistently attending their 1 month clinic follow ups. They were transportation, inflexibility of employers, personal family issues, inconsistent contact information (frequent phone number and address changes) and even forgetfulness (no barriers) as primary reasons for missed clinic appointments. Pareto chart analysis revealed patients scheduled for 1 month appointments were most likely to miss appointments. A multidisciplinary team was formed and created an aim statement, current and ideal process flow maps, and tested multiple change ideas with small tests of change. Changes tested include offering offsite lab visits, posting signage to assist with transportation, mailing letters after missed appointments, assisting with reminders in phones, reminder calls to patients with a history of missed appointments, and giving out patient expectation forms to new patients and at yearly appointments.
Results: Weekly show percentage of patients with SC disease on hydroxyurea attending their 4wk follow up appointment was evaluated using a p Shewhart chart. Upper control limit is 100%. Lower control limit is 40%. Mean percentage of target population attending scheduled appointments is 85%.
Implementing personal reminder phone calls to patients/families with a history of missing appointments was a successful strategy to improve show rate. along with Offering offsite lab visits and mailings of letters sharing the number of no show appointments with parents of children with only minimally did not significantly improved compliance rate for appointments. The letters did increase the number of families calling ahead to reschedule appointments.
Conclusions: Attending regular clinic appointments is an important component in positively impacting continuity of care and to maintain health for patients with SCD
By developing a well-defined process, effectively communicating expectations, and using data to guide next steps, this project demonstrates an effective approach to increasing clinic attendance in a vulnerable population.


Kenneth Mitten, MSW

Pediatric Sickle Cell Social Worker, Levine Childrens Hospitals
I am a Pediatric Sickle Cell Social Worker in the Pediatric Hematology, Oncology, and Transplant Program at Levine Children’s Hospital in Charlotte, NC. I specialize in treating the psychosocial needs of children, adolescents and young adults and families living with Sickle Cell... Read More →

Friday October 12, 2018 4:30pm - 4:45pm EDT
Constellation D