*Eufemia Jacob
UCLA School of Nursing
Oral Presentation – Research Track
Sunday, Sept 30, 2012: 11:03 AM – 11:23 AM – LK120

*Presenting Speaker

Learning to communicate and connect effectively with health care providers in a timely manner requires children and youth with sickle cell disease to have access to technology that is simple and easy to use.  Innovative approaches such as advances in wireless and smartphone technology have been shown to improve access to knowledgeable health care providers and improved health outcomes.

We developed the Wireless Pain Intervention Program for At Risk Youth with Sickle Cell Disease to 1) promote self-monitoring of pain and symptoms, 2) promote remote monitoring by a clinician of pain and symptoms that participants entered into a web-based e-diary accessible by using a smartphone, and 3) engage pediatric participants in dialogue that promote patient provider communications about pain and symptoms.

Participant were asked to complete pain and symptom measures using a smartphone to access a web-based e-Diary twice daily between April 2010 and December, 2010.  The e-Diary entries transmitted via a wireless service plan into a secure server were monitored remotely by an advanced practice registered nurse (APRN) with expertise in SCD.  Children and adolescents were eligible to participate if:  1) they were 10 to 17 years of age; 2) diagnosed with SCD; 3) able to speak, read, write, and understand English, and 4) able to use the computer and smartphone.

Participants (n=67) had mean age 13.0 ± 1.9 years; 54.3% were females.  Pain experienced at home was mild or moderate (mean 4.1 ± 2.2 on 0 to 10 visual analog scale); and were located at the front (20.3%) and back of chest (22.4%), abdomen (22.5%), and lower back (25.8%).  Symptoms reported were:  1) general symptoms such as tiredness/fatigue (34.7%), headache (20.8%), yellowing of the eyes (28.4%); 2) respiratory symptoms such as sniffling (32.9%), coughing (19.1%), changes in breathing (10.0%); and 3) musculoskeletal symptoms such as stiffness in joints (15.8%).  A significant negative correlation (r = -0.387, p=0.024) was found between pain and sleep.   Factors that predict the number of pain occurrences per week after controlling for time were:  1) number of previous history of SCD related events (eg, acute chest syndrome, splenectomy, stroke) reported (b=0.22 ± 0.10, p=0.04), 2) number of symptoms per week (b=0.09 ± 0.02, p<0.0001), and 3) number of negative thoughts per week (b=0.02 ± 0.01, p=0.01).

This is the first study in which children and adolescents with SCD used smartphones to report their symptoms and pain to an APRN who helped them to deal with and resolve their problems using a wireless system.   The participants self-monitored pain and symptoms and personally interacted with the APRN through text messages and direct phone calls using the smartphone.  The APRN monitored entries daily on the APRN web-interface where participant e-Diary entries may be seen and contacted participants (via text messages or phone calls) in the event that pain and other symptoms required attention, to maintain contact, and monitor their progress.   The APRN provided ongoing coaching, psychosocial support, educational interventions (including web-based resources), and referrals to providers (hematologist, pain specialists, primary care providers.

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