Pain, Coping and Sleep in Children and Adolescents With Sickle Cell Disease J. Kelly Graves, PhD, RN Eufemia Jacob, PhD, RN

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1 Pain, Coping and Sleep in Children and Adolescents With Sickle Cell Disease J. Kelly Graves, PhD, RN Eufemia Jacob, PhD, RN Sigma Theta Tau International 24 th International Nursing Research Congress July 22, 2013

2 Purpose To describe pain, coping and sleep in children and adolescents with sickle cell disease (SCD). To examine relationships among pain, coping, and sleep To determine factors that affect pain, coping and sleep age, gender pain intensity pain frequency

3 Significance and Background cont Children with SCD are frequently found to experience sleep disturbances (Palermo, et al; 2005) Children and adolescents with SCD who use ineffective coping with pain may experience a poor night s sleep and report high levels of continued pain the following day (Valrie, et al., 2007).

4 Significance and Background cont. Lack of sleep and sleep problems lead to: impaired mental and physical functioning (Valrie, et al., 2007). decrease in a child s cognitive performance and may eventually trigger behavioral problems (Sadeh et al., 2002). a lower health related quality of life (HRQOL) and experience functional disability (Palermo & Kirk (2005).

5 METHODS Design Cross-sectional Data collected at baseline -- Wireless Pain Intervention Program (Jacob, et al., 2012) Setting Sickle Cell Disease Foundation of California Eligibility Criteria: Age 10 to 17 years SCD diagnosis Ability to speak, read, write, understand English No cognitive or neurological impairments Assent of child/consent of parents

6 Procedures Completed pain and sleep measures prior to the WIP program using a computer Pain Intensity -- Electronic Visual Analog Scale Pediatric Pain Coping Questionnaire Pittsburg Sleep Questionnaire (PSQI)

7 Data Analyses SPSS (version 20.0) Descriptive Statistics T-tests Pearson Correlations

8 RESULTS Demographics [N=66] Children 39 Mean 11.9 ± 1.1 years Range 10 to 12 years Adolescents 27 Mean 15.5 ± 0.9 years Range 13 to 17 years Gender Males 31 (47%) Females 35 (53%)

9 Type SCD & Pain Episodes [N=66] Hemoglobin (Hgb) Phenotype Hgb SS 31 (47%) Hgb SC 16 (24.2%) Unknown 19 (28.8%) Number of Acute Pain Episodes Requiring Hospitalization 0 21 (31.8%) 1 to 3 per year 30 (45.5%) > 3 per year 8 (12.1%) Unknown 7 (10.6%)

10 History of SCD Related Complications & Other Illnesses (N=66) Acute Chest Syndrome 32 (48.5%) Asthma 14 (21.2%) Iron Overload 9 (13.6%) Splenectomy 8 (12.1%) Stroke 5 ( 7.6%) Avascular Necrosis 4 ( 6.1%) Leg Ulcers 4 ( 6.1%) Priapism 3 ( 4.5%) Splenic Sequestration 3 ( 4.5%) Cholecystectomy 2 ( 3.0%) Pulmonary Hypertension 2 ( 0.3%) Other Illnesses (not stated) 15 (22.7%) Some patients reported more than 1 illness; therefore, the total exceeds 100%.

11 Pain Intensity on 0 to 10 e-vas

12 Pain Frequency & Pain Severity

13 Coping CHILDREN (10 to 12 years) ADOLESCENTS (13 to 17 years) Males (n=15) Females (n=14) Males (n=16) Females (n=21) APPROACH Information seeking 2.7 ± 0.8 Problem solving 3.4 ± 0.8 Seeking social support 2.8 ± 0.9 Positive self-statements 2.5 ± ± ± ± ± ± ± ± ± ± ± ± ± 1.1 PROBLEM-FOCUSED AVOIDANCE Behavioral distraction 2.5 ± 1.0 Cognitive distraction 2.2 ± ± ± ± ± ± ± 1.0 EMOTION-FOCUSED AVOIDANCE Externalizing 1.5 ± 0.6 Internalizing/catastrophizing 2.2 ± ± ± ± ± ± ± 0.9

14 Examples of Coping Problem Solving (girls in both age groups & boys) Focus on pain issue & try to solve it. Positive self-statements (children - girls): Tell self: be strong, it s not so bad, it ll get better Cognitive Distraction (adolescent boys): Ignore the pain, try to forget, problem avoidance Behavioral distraction (adolescent boys): Do something fun, active, play

15 SLEEP Sleep Quality Very Good 31 (47.0%) Fairly Good 25 (37.9%) Fairly Bad 8 (12.1%) Very Bad 2 ( 3.0%) Sleep Latency 15 minutes 24 (36.4%) 16 to 30 minutes 23 (34.8%) 31 to 60 minutes 16 (24.2%) > 60 minutes 3 ( 4.5%) Sleep Duration > 7 hours 57 (86.4%) 6-7 hours 7 (10.6%) 5 hours 2 ( 3.0%)

16 SLEEP Sleep Efficiency >85% 47 (71.2%) 75-84% 11 (16.7%) 65-74% 4 ( 6.1%) <65% 4 ( 6.1%) Sleep Disturbance Not During past month 4 ( 6.1%) Less than once a week 38 (57.6%) Once or twice/week 22 (33.3%) Three or more times/week 2 ( 3.0%) Use of Sleeping Medication Not during past month 40 (60.6%) Less than 1x/week 7 (10.6%) 1x or 2x/week 7 (10.6%) 3 or more times/week 12 (18.2%)

17 Sleep Day Dysfunction Due to Sleepiness Never 34 (51.5%) 1 or 2x/month 19 (28.8%) 1 or 2x/week 10 (15.2%) 3 or more times/week 3 ( 4.5%) Global PSQI* 5.4 ±3.3 *Indicates poor sleep or sleep disturbances if >5

18 Most Common Sleep Disturbance Waking at middle of night/morning 19 (26.8%) Feeling too cold 15 (21.1%) Feeling too hot 14 (19.7%) Using the bathroom 14 (19.7%)

19 GLOBAL PSQI Pain Severity & Sleep Pain Frequency & Sleep

20 SUMMARY Adolescents and children with SCD frequently experience pain that affects their sleep and the way they cope with pain. The majority of participants had mild or moderate pain and some had sleep disturbances. Age, gender, frequency and severity of pain episodes did not have significant effects on pain, pain coping and sleep.

21 IMPLICATIONS FOR NURSING Screen, detect early, and implement interventions to alleviate pain and improve sleep. Referrals for problems with pain and sleep. Evaluate of effects of pharmaceutical interventions that alleviate pain, but may have effects on sleep. Psychosocial interventions to facilitate pain coping

22 References Jacob, E., Pavlish, C. Duran, J., Stinson, J., Lew, M.A., & Zeiltzer, L. (2012) Facilitating pediatric patient-provider communications using wireless technology in children and adolescents with sickle cell disease. Journal of Pediatric Health Care, 23. Palermo, T.M. & Kiska, R. Subjective sleep disturbances in adolescents with chronic pain (2005). Relationship to daily functioning and quality of life. The Journal of Pain 6(3). Sadeh, A., Gruber, R., Raviv, A.(2002) Sleep, neurobehavioral functioning and behavior problems in school-age children. Child Development 73(2). Valrie, C.R., Gil, K.M., Redding-Lallinger,R., Daeschner, C., (2007a). Brief Report: Daily mood as a mediator or moderator of the pain-sleep relationship in children with sickle cell disease. Journal of Pediatric Psychology,32(7).

23 Acknowledgements National Institute of Health National Heart, Blood, & Lung Institute ARRA Challenge GRANT#

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