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Purpose Our investigative team is integrating mobile health technologies into pediatric blood and marrow transplant (PBMT) care. We aim to evaluate whether patient-generated health data can be used to monitor health status and enhance symptom management. While there are numerous health-related apps, none address the symptoms or care needs specific to PBMT patients. This article describes development of the Technology Recording to better Understand Pediatric Blood and Marrow Transplant (TRU-PBMT) mobile application. Design and Methods A one-time survey was distributed to PBMT clinicians, caregivers, and outpatients to elicit feedback and suggestions for the app's design. Results Feedback from clinicians (n = 23), caregivers (n = 5), and PBMT outpatients (n = 4) indicated the app would be acceptable and useable with this group of patients between eight and eighteen years of age. Suggestions from respondents included: making the app language and graphics more child-friendly; adding symptoms such as fatigue, mucositis, bleeding; and a visual stool chart. Conclusion Patient, caregiver, and clinician feedback was valuable in creation of the TRU-PBMT app. We designed a pediatric friendly, PBMT-symptom-specific app, which we will test in future studies. Implications for Practice This app facilitates patient-generated health data collection and informs health care plans.

Sickle cell disease (SCD) presents a significant physical and psychological burden for persons with this chronic disease; however, little is known about how individuals with SCD--adult patients in particular--cope with disease-related stressors. The aim of this study was to identify and characterize factors that may influence the styles of coping among adults with SCD.The study sample included 46 adult patients with SCD-20 men and 26 women--with an average age of 32.04 years (range, 18-59). Patients completed a computer-based questionnaire that included measures of sociodemographics and the COPE, a measure of coping styles. End organ damage disease severity scores and frequency of hospitalizations were obtained from patients' medical records.Education was negatively associated with use of denial (r = -0.35; p = .017) and positively associated with use of planning (r = .29, p = .045). However, age, type of SCD, end organ damage, and frequency of hospitalizations were not associated with patient coping. There were significant gender differences in coping, with women reporting greater use of venting, positive reframing, and religion as coping strategies than men (all p.05). Women also tended to use more planning, emotional support, and acceptance than men (all p.10). These associations were not moderated by age, type of SCD, disease severity, or hospitalizations. Further, these gender differences were not better explained by differences in SCD experience.These findings suggest that in patients reporting similar experiences with SCD, coping differs by education and gender. Moreover, these differences in coping cannot be explained by clinical factors such as end organ damage and health care utilization. Sickle cell disease (SCD) presents a significant physical and psychological burden for persons with this chronic disease; however, little is known about how individuals with SCD--adult patients in particular--cope with disease-related stressors. The aim of this study was to identify and characterize factors that may influence the styles of coping among adults with SCD.

Objective: To determine the relationship of opioid analgesia to quality of life in adults with sickle cell. Design: Data were collected by patient interviews and review of medical records. The Medical Outcome Study 36-item Short Form (SF36) was used to determine quality of life. Setting: Duke Comprehensive Sickle Cell Center. Patients: 185 out-patients with various genotypes of sickle cell disease. Main Outcome Measure: Quality of life as measured by the SF36. Results: Quality of life outcomes were not lower in individuals with the classically more severe homozygous SS when compared to the heterozygous SC. SF36 scores were significantly lower in individuals who were on opioids alone or on opioids and hydroxyurea concurrently, as compared to those who were either on no medications or on hydroxyurea alone. Disease severity scores were not significantly different between groups. When controlling for hydroxyurea use, the negative association between opioid use and SF36 scores remained unchanged. Conclusions: Sickle cell patients using opioids daily had significantly poorer quality of life than those who were not on opioids. Disease severity scores were not significantly different in the two patient groups. Prospective studies are needed to define the relationship of opioid use to quality of life in sickle cell disease and opioid interaction with hydroxyurea.