Examining Caregiver Coping and Clinic Attendance in Pediatric Sickle Cell Disease

Corinne Evans

Authors:  Corinne Evans, Natalie Koskela-Staples, B.A., Elise Turner, M.S., David Fedele, Ph.D., & Vandy Black, M.D.

Faculty Mentor:  David Fedele

College:  College of Public Health and Health Professions


Introduction: Sickle Cell Disease (SCD), the most common genetic disorder in the U.S., primarily affects youth of African or Latino backgrounds.1 Regular clinic attendance promotes positive health outcomes in pediatric SCD.2 Caregivers of youth with SCD endorse high levels of stress which may disrupt clinic attendance.3 The current study examined whether caregiver coping with stress is associated with clinic attendance in pediatric SCD. Methods: Sixty-three caregivers and youth (Mage = 13.2, 60.3% male) completed the Responses to Stress Questionnaire – Sickle Cell Disease (RSQ-SCD). The RSQ-SCD assesses primary control engagement (PCE), secondary control engagement (SCE), and disengagement coping. We tabulated percent of pediatric hematology appointments attended over the past year via medical chart review. We conducted a regression to examine the relationship between caregiver coping styles and appointments attended. Results: Caregiver coping was characterized as 20.7% PCE, 27.9% SCE, and 12.7% disengagement. 61.1% of appointments were attended, 16.2% were canceled, and 12.2% were no-showed. Caregiver coping did not predict clinic attendance [F(4, 58)=2.114, p=0.091, R2∆=0.040]. Conclusions: Clinic attendance rates in this sample compare to samples in previous literature.3 In isolation, caregiver coping may not be a target for interventions focused on improving adherence to pediatric hematology appointments.

1. Center for Disease Control and Prevention. (2016). Sickle Cell Disease. Retrieved from https://www.cdc.gov/ncbddd/sicklecell/data.html.
2. Crosby, L.E., Modi, A.C., Lamanek, K.L., Guilfoyle, S.M., Kalinyak, K.A., & Mitchell, M.J. (2009). Perceived barriers to clinic appointments for adolescents with sickle cell disease. Journal of Pediatric Hematology and Oncology, 31, 571-576.
3. Cronin, R.M., Hankins, J.S., Byrd, J., Pernell, B.M., Kassim, A., Adams-Graves, P., Thompson, A.A., Kalinyak, K., DeBaun, M.R., & Treadwell, M. (2018). Modifying factors of the health belief model associated with missed clinic appointments among individuals with sickle cell disease. Hematology, 23(9), 683-691.

Poster Pitch

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19 Responses
  1. Jessica Reade

    Hi Corinne!

    This is a beautiful presentation! I particularly like how you focused on caregiver coping strategies, especially because there isn’t always attention given to caregivers!

    Great job!

    1. Corinne Evans

      Hi Jessica,

      Thanks for your feedback! I agree that not enough attention is given to caregiver coping, but hopefully that will continue to change in the future.

  2. Emily McHugh

    Corrine, your presentation was excellent! I also hope that caregiver coping will receive more attention in the future because caregivers play a vital role in the support system of the individual with the diagnosis. Awesome job bringing up such a necessary topic! Thank you!

  3. Brian Martinez

    Very important topic and great poster.

    Was your sample mostly male, female or pretty evenly split?

    Thank you for exposing me to a new topic!

    1. Corinne Evans

      Hi Brian,

      Thank you!

      The majority of caregivers in our sample were female (90.5%) and most were biological mothers of children with sickle cell (84.5%).

      Thanks for checking out my poster/presentation!

  4. Brian Martinez

    Very important topic and great poster.

    Was your sample mostly male, female or pretty evenly split?

    Thank you for exposing me to a new topic!

    1. Corinne Evans

      Hi Brian,

      Thank you for checking out my poster!

      The majority of caregivers in our sample were females (90.5%) and biological mothers of children with sickle cell (84.1%).

  5. Sashawn Lawrence

    Hello Corrine!
    You did an excellent job in both your video and poster. Since your results found that caregiver coping does not predict adherence, are there any other potential predictor(s) that you believe could be good at predicting adherence with sickle cell treatment?

    1. Corinne Evans

      Hi Sashawn,

      Thank you! That’s a great question. I think there could be many other sociodemographic and psychosocial variables that predict attendance in pediatric SCD. I would be interested in specifically looking at environmental variables like what type of community (e.g. urban, rural, low-SES, high-SES, etc) one lives in. I also think it would be interesting to explore the role of caregiver and/or child mental health (e.g. depression, anxiety, etc) in predicting attendance.