This project addresses the broad challenge area (06): Enabling Technologies and the specific challenge topic (06-MD-101) Development of Telehealth Tools to Promote Health and Connect At-Risk Youth to the Health System via Low-Cost, Mobile, and Wireless Technologies. Sickle cell disease (SCD) is an inherited disorder that affects red blood cells, by causing them to form a sickle shape, blocking blood flow, and causing a tremendous amount of pain in times of physiological or psychosocial stress. Youths with SCD are at risk for pseudoaddiction. This phenomenon occurs when pain is poorly controlled, and their attempts to obtain medications are perceived by clinicians as drug seeking. Because SCD predominantly affects ethnic minorities, many believe that large proportions of youths with SCD are addicted, when in fact their pain is physiologically based. Most youths manage painful episodes at home and delay seeking treatments until pain becomes intolerable. The delay in treatment for pain leads to poor coping, interference with function, and sleep disturbance. Eventually, these youths are at risk for poor academic achievement, decrease in quality of life, and other negative outcomes that may interfere with overall health. Effective coping in youths with SCD pain will require different strategies that would encourage them to connect with the health care system in a timely manner. Advances in telehealth and internet technology are innovative approaches that may improve access to knowledgeable health care providers, and improve pain management through wireless communications. The handheld wireless technology and web-based applications may potentially minimize barriers that limit access to timely pain relief. We propose to test the effectiveness of an innovative wireless pain intervention program in sickle cell disease that utilizes 1) a cell phone/PDA with a program (e-Ouch) that has questions about pain;2) a web link that will connect to resources including educational materials, a psychologist, and nurse practitioner, and 3) a peer social support network using cell phone/PDA. We will compare two groups of youths with SCD and randomly assign them to: 1) standard care, 2) standard care + wireless pain intervention program. Measurements will occur at baseline, then at 3 and 6 months following intervention. The youths (8 to 17 years old) in the standard care group will be asked to complete the paper diary three times a day on the days that they are having pain. The psychologist/youth counselor will explain the content in a booklet """"""""Coping with Pain: Strategies that Help"""""""" during the orientation session. The 14-page booklet is a short summary of strategies that help cope with pain (deep breathing, muscle relaxation, information on pain and the five senses, imagery), distraction techniques, positive self-statements and positive thinking, trigger analyses and self-monitoring, behavioral contracts, information on the emotion-pain connection, information on when counseling is needed, and resource/reading list. The youths in the intervention group will be instructed to use the cell phone/PDA to 1) answer questions on the e-Ouch(c) electronic diary three times a day on the days they are having pain, 2) link with the resources in the study web site, 3) connect with the psychologist/youth counselor who will be able to provide support and information about strategies for coping as needed, 4) connect with the nurse practitioner as needed who will be able to make an assessment, monitor, prescribe, and/or refer to other health care provider (pediatric pain specialist, hematologist), and 5) use the cell phone/PDA to connect with other youths with SCD, particularly the friendship network that will be connected via cell phone/PDA. We hypothesize that youths with SCD who participate in the wireless pain intervention program (WPIP) will have 1) increase pain coping;2) decrease pain interference with daily activities;3) improve sleep;4) increase quality of life;and 5) decrease health care use related to pain. Future studies will more specifically examine the cost effectiveness of the WPIP and whether this pain intervention program will generalize to other childhood disorders that require pain management. The study will examine the effectiveness of the Wireless Pain Intervention Program. The program will consist of 1) a cell phone/PDAs with a program (e-Ouch) that has questions about pain;2) a web link that will connect to resources including educational materials, a psychologist, and nurse practitioner, and 3) a peer social support network using cell phone/PDAs.

Public Health Relevance

The study will examine the effectiveness of the Wireless Pain Intervention Program. The program will consist of 1) a cell phone/PDAs with a program (e-Ouch) that has questions about pain;2) a web link that will connect to resources including educational materials, a psychologist, and nurse practitioner, and 3) a peer social support network using cell phone/PDAs.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
NIH Challenge Grants and Partnerships Program (RC1)
Project #
1RC1HL100301-01
Application #
7821521
Study Section
Special Emphasis Panel (ZRG1-RPHB-A (58))
Program Officer
Werner, Ellen
Project Start
2009-09-30
Project End
2011-08-31
Budget Start
2009-09-30
Budget End
2010-08-31
Support Year
1
Fiscal Year
2009
Total Cost
$500,000
Indirect Cost
Name
University of California Los Angeles
Department
Type
Schools of Nursing
DUNS #
092530369
City
Los Angeles
State
CA
Country
United States
Zip Code
90095
Jacob, Eufemia; Chan, Victoria Wong; Hodge, Christopher et al. (2015) Sensory and Thermal Quantitative Testing in Children With Sickle Cell Disease. J Pediatr Hematol Oncol 37:185-9
Howard, Jo; Inusa, Baba; Liossi, Christina et al. (2015) Prevention of Morbidity in sickle cell disease--qualitative outcomes, pain and quality of life in a randomised cross-over pilot trial of overnight supplementary oxygen and auto-adjusting continuous positive airways pressure (POMS2a): study protocol for a Trials 16:376
Tsao, Jennie C I; Jacob, Eufemia; Seidman, Laura C et al. (2014) Psychological aspects and hospitalization for pain crises in youth with sickle-cell disease. J Health Psychol 19:407-16
Graves, Joyce Kelly; Jacob, Eufemia (2014) Pain, coping, and sleep in children and adolescents with sickle cell disease. J Child Adolesc Psychiatr Nurs 27:109-20
Jacob, Eufemia; Mack, A Kyle; Savedra, Marilyn et al. (2014) Adolescent pediatric pain tool for multidimensional measurement of pain in children and adolescents. Pain Manag Nurs 15:694-706
Jacob, Eufemia; Pavlish, Carol; Duran, Joana et al. (2013) Facilitating pediatric patient-provider communications using wireless technology in children and adolescents with sickle cell disease. J Pediatr Health Care 27:284-92
Jacob, Eufemia; Duran, Joana; Stinson, Jennifer et al. (2013) Remote monitoring of pain and symptoms using wireless technology in children and adolescents with sickle cell disease. J Am Assoc Nurse Pract 25:42-54
Jacob, Eufemia; Stinson, Jennifer; Duran, Joana et al. (2012) Usability testing of a Smartphone for accessing a web-based e-diary for self-monitoring of pain and symptoms in sickle cell disease. J Pediatr Hematol Oncol 34:326-35