Mobile health use predicts self-efficacy and self-management in adolescents with sickle cell disease

Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD. Twenty-six AYA ages 13–21 years (54% female; 46% HbSS genotype; all African-American/Black) received six weekly group sessions (three in-person, three online). Participants were provided with the mobile app (iManage for SCD) to record progress on their self-management goals and log pain and mood symptoms. The Transition Readiness Assessment Questionnaire (TRAQ-5) assessed self-management skills and the Patient Activation Measure (PAM-13) assessed self-efficacy at baseline and post-treatment. Logging on to the app more frequently was associated higher mood ratings (r = .54, CI[.18, .77], p = .006) and lower pain ratings (r = −.48, CI[−.77, −.02], p = .04). Regression analyses demonstrated that after controlling for scores at baseline, the number of logins to the app predicted self-management skills (p = .05, η2 = .17) and possibly self-efficacy (p = .08, η2 = .13). Our study findings indicate that it can be challenging to maintain engagement in mHealth for AYA with SCD, but for those who do engage, there are significant benefits related to self-management, self-efficacy, and managing pain and mood

A Framework to Support Ubiquitous Healthcare Monitoring and Diagnostic for Sickle Cell Disease

Recent technology advances based on smart devices have improved the medical facilities and become increasingly popular in association with real-time health monitoring and remote/personals health-care. Healthcare organisations are still required to pay more attention for some improvements in terms of cost-effectiveness and maintaining efficiency, and avoid patients to take admission at hospital. Sickle cell disease (SCD) is one of the most challenges chronic obtrusive disease that facing healthcare, affects a large numbers of people from early childhood. Currently, the vast majority of hospitals and healthcare sectors are using manual approach that depends completely on patient input, which can be slowly analysed, time consuming and stressful. This work proposes an alert system that could send instant information to the doctors once detects serious condition from the collected data of the patient. In addition, this work offers a system that can analyse datasets automatically in order to reduce error rate. A machine-learning algorithm was applied to perform the classification process. Two experiments were conducted to classify SCD patients from normal patients using machine learning algorithm in which 99 % classification accuracy was achieved using the Instance-based learning algorithm

Perceptions of a self-management intervention for adolescents with sickle cell disease

Objective: Individuals with sickle cell disease (SCD) are at increased risk for complications from their disease during their adolescent and young adult (AYA) years. The risk of morbidity in AYAs with SCD can be decreased with improved self-management. Existing self-management interventions typically focus on one aspect of self-management (e.g., adherence) and do not address factors that activate patients (knowledge, motivation, self-efficacy, and social support) to self-manage. Sickle Cell Thrive (SCThrive) is a mixed in-person/online, technology-enhanced (use of a mobile app), group self-management intervention that targets patient activation. To determine the most clinically significant intervention components, a qualitative study was conducted. Method: Participants were 19 AYAs (Mage = 17.05) with SCD who participated in individual semistructured phone interviews after completing SCThrive. Interview content was coded using a grounded-theory approach to generate themes related to SCThrive’s feasibility, acceptability, and motivation for and impact on self-management. Results: SCThrive was reported to be highly feasible due to the mixed in-person/online format and acceptable because they learned skills to manage SCD in a group of AYAs with SCD. Action planning and pain/mood tracking appeared to be key factors in motivating AYAs for self-management. Participants reported continuing to use self-management skills post-SCThrive (self-efficacy) including applying them to other domains of their lives (e.g., educational/vocational). Conclusions: Study results provide data that can be leveraged to enhance the feasibility, acceptability, and impact of SCThrive and other self-management interventions. Findings can also inform clinical and mobile health interventions to increase self-management in this population

A Multidimensional Understanding of Pain Among Adolescents and Adults with Sickle Cell Disease: A Prospective, Predictive, Correlational Study

Sickle Cell Disease (SCD) is a disorder that disrupts the lives of thousands of Americans and causes recurring pain. Multidimensional factors including centralized pain, pain catastrophizing, and centrally-mediated symptoms, or the S.P.A.C.E. symptom cluster (i.e., sleep impairment, widespread pain, depression, anxiety, cognitive function, and fatigue) influence pain perception. Having comprehensive knowledge of the SCD-associated pain characteristics could lead to more effective pain management approaches. However, little SCD research has evaluated the incidence and severity of these multidimensional factors. The purpose of this longitudinal study was to: 1) describe the incidence and severity of several pain influencing factors including pain catastrophizing, centralized pain, and S.P.A.C.E. symptoms (sleep impairment, multifocal pain, depression, anxiety, cognitive function, fatigue) in adolescents and young adults with SCD, 2) evaluate the predictive relationships among S.P.A.C.E. symptoms, opioid consumption, and pain interference, 3) examine the predictive relationships among pain catastrophizing, centralized pain, opioid consumption, and pain interference, and 4) characterize the co-occurrence of baseline S.P.A.C.E. symptoms, pain interference, opioid consumption, pain intensity, and Pain Area and Intensity Number Summation [P.A.I.N.S. (a metric that combines pain intensity and widespread pain)]. Forty-eight adolescents and adults with SCD were recruited from Pediatric and Adult Sickle Cell Clinics. Participants completed baseline measures of pain catastrophizing, centralized pain, S.P.A.C.E. symptoms, pain intensity, and P.A.I.N.S. After the completion of baseline measures, participants completed weekly opioid consumption and pain interference surveys. Two-part models were used to analyze the predictive relationships among the multidimensional factors, weekly pain interference, and average daily opioid consumption. Multiple Spearman correlations were calculated to characterize the co-occurrence of baseline S.P.A.C.E. symptom severity scores, pain interference, average daily opioid consumption, pain intensity, and P.A.I.N.S. Baseline depression, anxiety, and pain catastrophizing severity were low. One-fourth of participants were positive for centralized pain. Widespread pain (β=0.16; p < 0.05) and centralized pain (β=0.13; p < 0.05) were the only factors that significantly predicted increased opioid consumption. Pain catastrophizing had a significant negative relationship with opioid consumption (β=-0.03; p < 0.05). Within the pain interference models, fatigue (β=0.04; p < 0.05) and centralized pain (β=0.06; p < 0.05) were the only factors that significantly predicted more pain interference over time. Many S.P.A.C.E. symptoms (i.e., sleep impairment, anxiety, depression, cognitive function, and fatigue) were moderately and significantly correlated with one another. Pain interference was moderately and significantly correlated with all but one S.P.A.C.E. symptom (depression). Widespread pain was the only S.P.A.C.E. symptom that was significantly associated with average daily opioid consumption, pain intensity, and P.A.I.N.S. Our findings demonstrate significant predictive relationships between centralized pain, opioid consumption, and pain. The results of this study should be interpreted with caution due to suboptimal data completion rates, small sample size, and low symptom severity. Routine assessment of centralized pain may facilitate the implementation of individualized pain management approaches, which may subsequently reduce pain and opioid use and improve function and quality of life among patients with SCD.PHDNursingUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/163053/1/claremd_1.pd

Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease

Sickle cell disease (SCD) refers to a group of inherited blood disorders with considerable morbidity that causes severe pain, reduces life expectancy, and requires significant self-management. Acute painful episodes are the hallmark of SCD, but persistent daily pain is also highly prevalent in this population. Characterising the impact and experience of SCD-related morbidity (i.e., sleep disruption, frequent emergency department visits, cognitive dysfunction) on health-related quality of life (HRQOL) requires multiple assessment methods to best capture the underlying mechanisms. To gain a greater understanding of the effect of common symptom categories on HRQOL and to determine potential pain coping targets, the present study investigated whether demographic, socioeconomic, sleepiness, pain burden, frequency of emergency department (ED) visits, and cognition predicted HRQOL in a paediatric sample of patients with SCD. Our study was a secondary analysis of baseline assessment data of children with SCD aged 8-15 years (n = 30) in the Prevention of Morbidity in Sickle Cell Anaemia Phase 2b (POMSb2) randomised controlled clinical trial of auto-adjusting continuous positive airways pressure. Patients completed cognitive testing (IQ, Processing Speed Index, Delis-Kaplan Executive Function Scale (DKEFS) Tower, Conner's Continuous Performance Test), sleepiness (Epworth Sleepiness Scale), and HRQOL (PedsQL Sickle Cell Module) at baseline. Patients reported pain burden (Sickle Cell Pain Burden Inventory-Youth) each month over 8 visits. Caregivers provided demographic information and reported their child's executive function (Behavioural Rating Inventory of Executive Function) at baseline. Data from our analysis demonstrated that demographic factors (i.e., age, gender, level of neighbourhood deprivation) and treatment variables (i.e., hydroxyurea use) did not independently predict HRQOL, and laboratory values (i.e., haemoglobin, haematocrit, mean oxygen saturation) were not significantly correlated with HRQOL (ps > 0.05). However, sleepiness, pain burden, ED visits, and executive dysfunction independently predicted HRQOL (R 2 = 0.66) with large effects (η2 = 0.16 to 0.32). These findings identify specific, measurable symptom categories that may serve as targets to improve HRQOL that are responsive to change. This knowledge will be useful for multimodal interventions for paediatric patients with SCD that include sleep management, pain coping strategies, and executive function training

Monitoring and Improving User Compliance and Data Quality For Long and Repetitive Self-Reporting MHealth Surveys

abstract: For the past decade, mobile health applications are seeing greater acceptance due to their potential to remotely monitor and increase patient engagement, particularly for chronic disease. Sickle Cell Disease is an inherited chronic disorder of red blood cells requiring careful pain management. A significant number of mHealth applications have been developed in the market to help clinicians collect and monitor information of SCD patients. Surveys are the most common way to self-report patient conditions. These are non-engaging and suffer from poor compliance. The quality of data gathered from survey instruments while using technology can be questioned as patients may be motivated to complete a task but not motivated to do it well. A compromise in quality and quantity of the collected patient data hinders the clinicians' effort to be able to monitor patient's health on a regular basis and derive effective treatment measures. This research study has two goals. The first is to monitor user compliance and data quality in mHealth apps with long and repetitive surveys delivered. The second is to identify possible motivational interventions to help improve compliance and data quality. As a form of intervention, will introduce intrinsic and extrinsic motivational factors within the application and test it on a small target population. I will validate the impact of these motivational factors by performing a comparative analysis on the test results to determine improvements in user performance. This study is relevant, as it will help analyze user behavior in long and repetitive self-reporting tasks and derive measures to improve user performance. The results will assist software engineers working with doctors in designing and developing improved self-reporting mHealth applications for collecting better quality data and enhance user compliance.Dissertation/ThesisMasters Thesis Computer Science 201

An Electronic Daily Diary Study of Sleep Quality, Pain, and Emotion Regulation in Children with Juvenile Idiopathic Arthritis

Children with juvenile idiopathic arthritis (JIA) experience frequent, fluctuating pain, not fully explained by medical factors. Previous research identifies sleep as an important predictor of pain and daytime functioning. This study extended inquiry on the role of sleep in daily pain by employing electronic daily diaries (e-diaries) that allowed children to report symptoms and behavior in the natural environment 3 times each day. In addition to replicating previous findings that daily and typical sleep quality predict pain intensity (t(2456) = -3.20, p =.001; t(51) = -3.64, p < .001), this study built on research on emotions in the pain-sleep association by testing the role of emotion recovery. The momentary association between sleep quality and pain intensity was moderated by positive emotion recovery. Consistent with current pediatric pain models, sleep and pain were also examined as predictors of functional outcomes (i.e., across aspects of physical, social, and school functioning). Pain intensity mediated the association between daily and typical sleep quality and functional limitations. Findings support ongoing, mechanistic research on pain and sleep in children with JIA and a clinical need to assess sleep and incorporate psychosocial interventions targeting sleep and promoting positive emotions into the care of children with JIA.Doctor of Philosoph

iPad Application for Pain Assessment in Youths with Developmental Disabilities and Complex Communication Needs

Aims: Development of a new pain assessment for youths with communication challenges. The Guard-Putzer Pain Assessment Domains (gPAD) for the iPad was designed and tested as a more universally accessible way for youths, ages 7-to-12 years, with a developmental disability (DD) to express their private pain experiences through self-report. Methods: A two-phase process developed the design for an app, created an interactive prototype, and tested its face validity and user interface. This work included a review of current assessments and pain apps as well as completed a survey to obtain descriptive data on clinical practicality of the gPAD. Fifteen occupational therapists reviewed the gPAD assessment design and reported their experience. Results: Thirteen respondents agreed to the statement that they would use the gPAD for this populatio. School-based practitioners seemed to identify the most significant need for such a new app. Conclusions: Advancement of this app could mainstream the assessment of pain in youths with DD