PI’s: Clark Brown & May Wang
Sickle Cell Disease (SCD) is the most prevalent hereditary disease, particularly among African descendants. Even with the advancements in modern medicine, SCD persists as one of the major world health problems recognized by international health agencies. Over three quarters of SCD sufferers are in Africa, where local medical insufficiencies make research into the disease difficult1. SCD is characterized by chronic hemolytic anemia and vaso-occlusion, leading to irreversible organ damage as early as 9 months of age. Vaso-occlusive pain crisis (VOC) is the most common reason for hospitalization, comprised of acute painful episodes in multiple body sites, such as abdominal and bone. In the U.S. alone, VOC (“crisis”) in SCD patients is responsible for more than 75,000 hospitalizations per year with an average hospital stay of approximately 4-6 days. SCD patients who suffer a larger number of painful crises often require frequent hospital readmission2, 3, and are at increased risk of early mortality4. A North American study estimated that 10 to 19 year-old SCD teenagers have 8 times of death probability higher than the population of the same age and race5.
Effective SCD management requires frequent medical monitoring, including tracking treatment adherence in context of the severity of a patient’s crisis. Previous studies support that adherence to prescribed medications is directly linked to health outcome6-8. Unfortunately, conventional monitoring systems are often ineffective due to incomplete data recording, reporting bias and lack of context with clinical status. Prior studies have demonstrated that parent and child recall often overestimate medication compliance, when compared with more objective methods such as electronic monitoring or bioassay. Thornburg et al found that treatment adherence as measured by parental report was 82% compared with 49% measured on the basis of pharmacy refill records9. Conventional monitoring systems are typically paper-based or web- based diaries. Paper-based diaries require patients to carry forms or notebooks, which are impractical, and prone to sporadic use by older adolescent patients10-12. Most studies using pain diaries report completion rates of 64-76%. One study by Lewandowski et al randomized 30% of their participants to report via an electronic diary instead of paper11. Although completion response difference between these two groups was not the main focus of the study, children using electronic diaries completed 6.89 days on average as compared to 4.97 days in the paper diary reporting group11. Cell phone use exceeds computer access for the US population 21 and younger, particularly for minority youth populations13. We expect that enabling entry into a personal diary through a simple cell phone interface will further improve response rates.
Electronic monitoring systems have the advantage of automating several of the details required for accurate interpretation of treatment adherence. Moreover, electronic monitoring systems have the capacity for automated reminders and query of clinical symptoms. The integration of patient self-report with electronic tracking of medication use has the potential to allow prompt adjustment of therapy by medical providers. In addition, collecting new data about out-patient milestones might lead to solutions that prevent frequent hospital readmissions. These milestones include return to regular diet, exercise, and school attendance. Studies have demonstrated that mobile phone text messaging (SMS-text) can be an effective tool in clinical and health behavior interventions14-18, such as medication adherence19-22, clinical management23-26, and health-related behavior modification27-30. We are not aware of any published study investigating SMS-text in the SCD population. Our proposed research, SickleREMOTE (Sickle Cell REporting and MOnitoring for TElemedicine), will explore whether data collection via SMS-text will improve medication compliance, support effective just-in-time disease assessment, enhance patient- caregiver interactions, and reduce hospital readmission.
The specific aims of SickleREMOTE are to (1) develop a two-way SMS-text system of treatment cues and adherence recording, (2) implement a unified, patient-friendly SMS-text format of validated pain and quality of life assessment tools for SCD, (3) assess the accuracy of data capture by SMS-text with published studies using conventional patient-report tools, and (4) evaluate the feasibility and acceptability to patients and caregivers of SMS-text as a disease management tool.
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