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Suzanne Ameringer, PhD, RN R. K. Elswick, Jr. PhD Wally Smith, MD Virginia Commonwealth University

Correlations between Biological and Behavioral Factors and Fatigue in Sickle Cell Disease in Adolescents and Young Adults. Suzanne Ameringer, PhD, RN R. K. Elswick, Jr. PhD Wally Smith, MD Virginia Commonwealth University. Council for the Advancement of Nursing Science

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Suzanne Ameringer, PhD, RN R. K. Elswick, Jr. PhD Wally Smith, MD Virginia Commonwealth University

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  1. Correlations between Biological and Behavioral Factors and Fatigue in Sickle Cell Disease in Adolescents and Young Adults Suzanne Ameringer, PhD, RN R. K. Elswick, Jr. PhD Wally Smith, MD Virginia Commonwealth University Council for the Advancement of Nursing Science 2012 State of the Science Congress on Nursing Science Washington, DC

  2. Sickle Cell Disease • Genetic hemolytic disorders characterized by: • Chronic profound hemolytic anemia • Vaso-occlusion • Inflammatory reactions • Worldwide: 300,000 infants born with SCD annually (WHO, 2010) • US: 1 in 500 AA, 1 in 36,000 HA (NHLBI) • Life expectancy- early middle age

  3. Fatigue in SCD • Fatigue affects quality of life (cognitive function, well-being, daily activities) (Falk, 2007; Kralik, 2005, Ream, 1997; Smith, 2010) • Illness characteristics that may lead to or increase SCD fatigue: • Anemia, inflammation, pain, anxiety, depressive symptoms, stress • Research on SCD fatigue sparse • Tired, lack energy (While, 2004) • Vitality lower compared to healthy individuals (McClish, 2005) • Adolescents and young adults (AYA) with SCD particularly vulnerable as begin to pursue life goals

  4. Potential Correlates of SCD fatigue • Anemia(Cella, 2002; Yeh, 2008) • Pain(Ballas, 2006; McClish, 2005) • Anxiety and depressive symptoms(Cathebras, 1992; Whitsett, 2008) • Stress(Aaronson, 2003; Kerr, 2008) • Sleep quality (Lavidor, 2003; Owen, 1999)

  5. Inflammation • Sickled RBCs disrupt and stimulate the vascular endothelium causing inflammation. • Potential inflammatory cytokines involved with fatigue • Interleukin (IL) – 1 • Affects hippocampal activity (integral to sleep regulation)(Luk, 1999) • Tumor necrosis factor(TNF) – α • Alters slow-wave activity associated with non-rapid eye movement sleep (Yoshida, 2004) • IL - 1 and Tumor necrosis factor(TNF) – αassociated with: • Decreased muscle strength (Visser, 2002) • Decreased exercise capacity (Carmichael, 2006) • IL - 6 • Interferes with stage of REM sleep (Spath-Schwalbe, 1998)

  6. Purpose • Examine the relationships between biological and behavioral factors and fatigue in adolescents and young adults with SCD

  7. Conceptual Model of SCD Fatigue Biological and Behavioral Variables Inflammation, oxygenation, pain, anxiety, depressive symptoms, sleep quality, stress Personal and Disease-related Cofactors Age, gender, disease severity, crisis status Strategies to Manage Fatigue Sickle Cell Disease Quality of Life Neuroendocrine & Immunological Mediators Fatigue

  8. Methods • Design: Cross-sectional, descriptive • Sample: • Inclusion criteria: • Ages 15-30 years with SCD • Exclusion criteria: • Participant’s (and/or minor’s parent’s) inability to read and write in English • Women who were pregnant • Procedure: • Recruited from VCUHS pediatric and adult hematology clinics and units

  9. Sample Characteristics (N = 60)

  10. Mean (SE) Fatigue Measures: Total Scores

  11. Correlations between Fatigue Measures and Cytokines

  12. Fatigue and Hemoglobin Scatterplot with Linear Regression Line BFI MFSI-SF PROMIS

  13. Correlations between Fatigue andBehavioral Variables * p < 0.05,**p < 0.01, ***p≤0.001

  14. Mean (SE) Fatigue Scores by Sex

  15. Mean (SE) Fatigue Scores by Disease Severity

  16. Summary • All fatigue measures were significantly associated with stress, anxiety, sleep, depressive symptoms, pain • Fatigue scores were not significantly associated with cytokines (inflammation), hemoglobin (except PROMIS), or age • Fatigue scores did not differ by sex(except PROMIS) or disease severity

  17. Limitations • Cross-sectional • Sample – convenience, one institution • No age-matched controls • Small sample size

  18. Conclusions • Various correlates of fatigue suggest common etiologies may be at play • Distinguishing etiologies may be difficult • Fatigue may be a measure of health -May be important to screen for other conditions • Longitudinal studies needed to examine the trajectory of fatigue • Need interventions to better manage or reduce fatigue

  19. Acknowledgements • NINR (P30 NR011403, Center of Excellence for Biobehavioral Approaches to Symptom Management (Grap, PI). • Mary Jo Grap • Nancy McCain • Debra Lyon • Rita Pickler • Shari Cordon • Yui Matsuda • Julie Stillman • Erica Gregory • Virginia Smith • India Sisler • Jennifer Newlin • Patients and families at the VCU pediatric and adult clinics

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