Abstract
Background
The Build, Educate, Advance, Transition, in Sickle cell disease (BEATS) music therapy program was developed to address health challenges faced by adolescents/young adults (AYA) with sickle cell disease (SCD) during the transition to adult medical care.
Objective
The purpose of this study was to investigate the effects of BEATS on self-efficacy, trust, knowledge about SCD, and adherence in adolescents/young adults (AYA) with SCD.
Subjects
Thirty AYA with SCD, 18–23 years old, recruited from an adult SCD clinic agreed to participate in four BEATS sessions over 1 year.
Methods
Self-efficacy, trust and SCD knowledge were measured prospectively at baseline and months 3, 6, 9, and 12. Adherence to clinic appointments and healthcare utilization were measured retrospectively from medical records. A repeated measures linear mixed-effect model with compound symmetry covariance structure was used to fit the data.
Results
BEATS participants demonstrated a significant improvement in SCD knowledge (p = 0.0002) compared to baseline, an increase in acute care clinic, but not emergency department, utilization (p = 0.0056), and a non-significant improvement in clinic attendance (p = 0.1933). Participants’ subjective evaluations revealed a positive response to BEATS. There were no significant changes in self-efficacy, trust, hospital admissions, or blood transfusion adherence.
Conclusion
Culturally tailored, developmentally appropriate music therapy transition interventions can concretely improve SCD knowledge and may improve transition for AYA with SCD.
Appendix A
Seidman Sickle Cell Knowledge Quiz
Signature:____________________________________________
Study ID#: __________ Date: ______________
1. What type of sickle cell disease do you have?
a. HbSS
b. HbSC
c. HbSbeta thalassemia
d. Not Sure
2. Adults with sickle cell disease with these symptoms should be seen by a doctor right away:
a. Fever above 100.5°F
b. Numbness in one side of the body
c. Severe coughing and wheezing
d. A terrible headache
e. All of the above
3. White blood cells:
a. Carry oxygen throughout the body
b. Fight infection
c. Cause sickle cell crisis
d. None of the above
4. Why should you know about your sickle cell disease?
a. To talk to other people about sickle cell disease
b. Understand your doctor’s advice
c. Understand more about your body
d. Speak with your doctor about sickle cell complications
e. All of the above
5. Sickle cell trait can become sickle cell disease.
a. True
b. False
6. Sickle cell disease is transmitted by:
a. Touching someone who has sickle cell disease
b. Genes from parents to their child
c. Drinking contaminated water
d. A blood transfusion
Seidman Sickle Cell Knowledge Quiz
Signature:____________________________________________
7. People with sickle cell disease cannot attend college because they might get sick while in college.
a. True
b. False
8. Normal red blood cells DO NOT:
a. Carry oxygen and flow easily throughout the body
b. Appear soft and flexible
c. Live 120 days
d. Cause a pain crisis
9. Sickle-shaped red blood cells are:
a. Shaped like crescents or a banana
b. Sticky and hard
c. Inflexible
d. Live 10–20 days
e. All of the above
10. Which of the following DOES NOT cause red blood cells to become sickle shaped?
a. Stress
b. Fever
c. Hydration
d. Cold exposure
e. Dehydration
f. Low oxygen
g. Slow blood flow
11. Good health care for adults living with sickle cell disease involves
a. Rest
b. Healthy fluids and food
c. Medications and medical care
d. Social support
e. All of the above
12. How much water should you drink a day?
a. 2 to 3 cups
b. 1 gallon
c. 8 to 10 glasses
d. 8 ounces
Acknowledgments
This work was supported by the Kulas Foundation, Cleveland, OH (grant number K14026M). All individuals that provided a significant contribution to this project are either listed among the authors or acknowledged below. The authors would like to thank Mark Schluchter, PhD for assisting with study design, Jeanmarie C. Rose, MPA for administering study measures, Ellen Neumeister for assisting with collecting the utilization data, and the wonderful staff of the Adult Sickle Cell Disease Clinic for their support. The authors would also like to thank all of the patients that participated in this study.
Funding Sources: Supported by the Kulas Foundation, Cleveland, OH (grant number K14026M).
Conflicts of interest: There are no real, perceived, or potential conflicts of interest among any of the authors. The Kulas Foundation had no role in the 1) study design; 2) collection, analysis and interpretation of data; 3) the writing of the report; or 4) the decision to submit the manuscript for publication. Samuel N. Rodgers-Melnick, MT-BC wrote the first draft of this manuscript, and no form of payment was provided to anyone for the production of this manuscript.
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Supplementary Material
The online version of this article offers supplementary material (DOI: https://doi.org/10.1515/ijamh-2017-0004).
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