Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT) efficacy trial: Community health worker support may increase hydroxyurea adherence of youth with sickle cell disease.

Despite disease-modifying effects of hydroxyurea on sickle cell disease (SCD), poor adherence among affected youth commonly impedes treatment impact. Following our prior feasibility trial, the "Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT)" multi-site randomized controlled efficacy trial aimed to increase hydroxyurea adherence for youth with SCD ages 10-18 years. Impaired adherence was identified primarily through flagging hydroxyurea-induced fetal hemoglobin (HbF) levels compared to prior highest treatment-related HbF. Eligible youth were enrolled as dyads with their primary caregivers for the 1-year trial. This novel semi-structured supportive, multidimensional dyad intervention led by community health workers (CHW), was augmented by daily tailored text message reminders, compared to standard care during a 6-month intervention phase, followed by a 6-month sustainability phase. Primary outcomes from the intervention phase were improved Month 6 HbF levels compared to enrollment and proportion of days covered (PDC) for hydroxyurea versus pre-trial year. The secondary outcome was sustainability of changes up to Month 12. The 2020-2021 peak coronavirus disease 2019 (COVID-19) pandemic disrupted enrollment and clinic-based procedures; CHW in-person visits shifted to virtual scheduled interactions. We enrolled 50 dyads, missing target enrollment. Compared to enrollment levels, both HbF level and PDC significantly - but not sustainably - improved within the intervention group (p = .03 and .01, respectively) with parallel increased mean corpuscular volume (MCV) (p = .05), but not within controls. No significant between-group differences were found at Months 6 or 12. These findings suggest that our community-based, multimodal support for youth-caregiver dyads had temporarily improved hydroxyurea usage. Durability of impact should be tested in a trial with longer duration of CHW-led and mobile health support.

Electronic Cigarette Use and Academic Performance Among Adolescents and Young Adults: A Scoping Review.

BACKGROUND: There are documented links between substance use and poor educational outcomes. However, less is known about electronic cigarette (e-cigarette) use in relation to academics. Therefore, this scoping review aimed to synthesize associations between e-cigarette use and academic performance among adolescents and young adults. METHODS: Seven electronic databases were searched. Original research articles were included if associations between e-cigarette use and academic performance among adolescents and young adults aged 11 to 25 years were examined. Extracted data included study and participant descriptors, measures of e-cigarette use and academic performance, key findings, and study limitations. Measures of academic performance were grouped as academic achievement, academic behaviors, or cognitive attitudes. RESULTS: Thirty-three studies met inclusion criteria. Most were cross-sectional (n = 28). Significant associations to e-cigarette use were identified across all categories: academic achievement (ie, school grades (n = 24)), academic behaviors (ie, school difficulties (n = 1), time spent on homework (n = 1), school suspension (n = 1), and truancy (n = 3)), and cognitive attitudes (ie, school stress (n = 1), school alienation (n = 1), and school engagement (n = 2)). Longitudinal associations were also identified in 5 prospective cohort studies: among adolescents, poor academic grades (n = 4), and truancy (n = 1) predicted future e-cigarette use, and e-cigarette use predicted future lower school grades (n = 1). CONCLUSIONS: E-cigarette use during adolescence and young adulthood is associated with poor academic achievement. There is some evidence that academic achievement may predict future e-cigarette use; less evidence supports the opposite direction. Study designs are needed to support a causal connection. Investigators should consider moving from studying associations and instead look for causal evidence.

Mental and Emotional Health of Caregivers of Youth with Sickle Cell Disease: A Systematic Review.

People of African descent and those identifying as Black and/or Latino experience a disproportionate burden of sickle cell disease (SCD), a chronic, serious blood condition. Caregivers of children with chronic medical conditions report worse mental health than others. Disease-associated stressors can affect caregivers of children with SCD. We conducted a systematic review to summarize the prevalence of mental health symptoms in caregivers of children with SCD and to see if symptoms were associated with the child's SCD. This review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. We searched PubMed, PsycINFO, and Embase, identifying 1,322 records of which 40 met criteria for inclusion in this review. Findings suggest caregivers experience mental health problems, and poorer mental health was associated with worse child SCD-related outcomes and treatment adherence. Efforts should be made to routinely screen SCD caregiver mental health and to refer accordingly.

Improving quality of life and self-care for patients on hemodialysis using cognitive behavioral strategies: A randomized controlled pilot trial.

INTRODUCTION: Behavioral-education interventions have the potential to improve quality of life and self-care for patients on hemodialysis (HD) but have not been incorporated into routine clinical practice. The purpose of this pilot study was to determine the feasibility of delivering a simple behavioral-education intervention using cognitive behavioral strategies in patients receiving HD with poor quality of life. METHODS: In this mixed methods study, HD patients were randomly assigned to the study intervention (8 behavioral-education sessions delivered over 12 weeks) or a control group of dialysis education alone. Kidney disease quality of life (KDQOL)-36 scores, depressive symptoms and self-care behaviors were measured at weeks 0, 8, and 16. Following study completion, participants, social workers, and physicians provided their perspectives about the intervention via qualitative interviews. FINDINGS: Forty-five participants were randomized. Due, in part, to social worker attrition from the intervention arm, 34 participants (76%) completed at least 1 study session and were included in the analysis. The intervention led to modest, but non-significant, increase in KDQOL-physical component summary scores (+3.1±1.2 points) from week 0 to week 16. There were small, non-significant decreases in interdialytic weight gain and pre-dialysis phosphorus levels in the intervention group. Participants felt that chair-side delivery was practical and efficient, and that content related to the impact of dialysis on daily life was unique and important. Suggestions for adapting the intervention included narrowing its content and its delivery by additional providers that are not necessarily therapy trained. DISCUSSION: In this pilot study, we were able to deliver a simple behavioral-education intervention to improve both quality of life and self-care. Participants had a positive impression of the intervention, but we did not find significant improvements in quality of life or self-care. We will now adapt our intervention by narrowing its content and by using other providers that are focused solely on delivering the intervention.

Pediatric hematology providers' contraceptive practices for female adolescents and young adults with sickle cell disease: A national survey.

BACKGROUND: Adolescent and young adult (AYA) women with sickle cell disease (SCD) have increased pregnancy-related health risks and are prescribed potentially teratogenic medications, yet limited data are available regarding pediatric SCD provider contraceptive practices. We aimed to assess pediatric hematology providers' beliefs, practices, motivators, and barriers for providing contraceptive care to female AYAs with SCD. METHODS: Guided by the Health Belief Model (HBM), we developed a 25-question, web-based survey to assess practices. Survey links were distributed nationwide to pediatric SCD and/or general hematology providers through their publicly available emails and by request to directors of U.S.-accredited Pediatric Hematology-Oncology fellowship programs for distribution to their SCD providers. Data analysis included descriptive statistics, chi-square analysis, and logistic regression. RESULTS: Of 177 respondents, 160 surveys meeting inclusion criteria were analyzed. Most providers reported counseling (77.5%) and referring female AYA patients for contraception (90.8%), but fewer reported prescribing contraception (41.8%). Proportionally fewer trainees provided counseling compared with established providers (54% vs. 85%, p < .001), with a similar trend for prescribing (p = .05). Prescription practices did not differ significantly by provider beliefs regarding potential teratogenicity of hydroxyurea. Key motivators included patient request and disclosure of sexual activity. Key barriers included inadequate provider training, limited visit time, and perceived patient/parent interest. CONCLUSION: Provider contraceptive practices for female AYAs with SCD varied, especially by provider status. Health beliefs regarding teratogenic potential of hydroxyurea did not correlate with contraceptive practices. Clinical guidelines, provider training, and patient/parent decision-making tools may be tested to assess whether provider contraceptive practices could be improved.

Mental health assessment of youth with sickle cell disease and their primary caregivers during the COVID-19 pandemic.

Youth with sickle cell disease (SCD) and their caregivers are susceptible to stress and depression, perhaps exacerbated by pandemic-associated health and economic concerns. Most of the 50 youth-caregiver dyads enrolled in the multisite trial, Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment (HABIT), took an online survey of self-reported mental health symptoms and food insecurity during the 2020 COVID-19 pandemic. Compared to largely pre-pandemic results, prevalence of mental health symptoms in dyad members appeared to have shifted: fewer youth and more caregivers were affected during the pandemic; many of both groups lacked optimism. Pandemic/post-pandemic screening of youth with SCD for mental health symptoms and food insecurity appears warranted.

From Reflection to Action: Combining Machine Learning with Expert Knowledge for Nutrition Goal Recommendations.

Self-tracking can help personalize self-management interventions for chronic conditions like type 2 diabetes (T2D), but reflecting on personal data requires motivation and literacy. Machine learning (ML) methods can identify patterns, but a key challenge is making actionable suggestions based on personal health data. We introduce GlucoGoalie, which combines ML with an expert system to translate ML output into personalized nutrition goal suggestions for individuals with T2D. In a controlled experiment, participants with T2D found that goal suggestions were understandable and actionable. A 4-week in-the-wild deployment study showed that receiving goal suggestions augmented participants' self-discovery, choosing goals highlighted the multifaceted nature of personal preferences, and the experience of following goals demonstrated the importance of feedback and context. However, we identified tensions between abstract goals and concrete eating experiences and found static text too ambiguous for complex concepts. We discuss implications for ML-based interventions and the need for systems that offer more interactivity, feedback, and negotiation.

Automated vs. Human Health Coaching: Exploring Participant and Practitioner Experiences.

Health coaching can be an effective intervention to support self-management of chronic conditions like diabetes, but there are not enough coaching practitioners to reach the growing population in need of support. Conversational technology, like chatbots, presents an opportunity to extend health coaching support to broader and more diverse populations. However, some have suggested that the human element is essential to health coaching and cannot be replicated with technology. In this research, we examine automated health coaching using a theory-grounded, wizard-of-oz chatbot, in comparison with text-based virtual coaching from human practitioners who start with the same protocol as the chatbot but have the freedom to embellish and adjust as needed. We found that even a scripted chatbot can create a coach-like experience for participants. While human coaches displayed advantages expressing empathy and using probing questions to tailor their support, they also encountered tremendous barriers and frustrations adapting to text-based virtual coaching. The chatbot coach had advantages in being persistent, as well as more consistently giving choices and options to foster client autonomy. We discuss implications for the design of virtual health coaching interventions.

A new approach to integrating patient-generated data with expert knowledge for personalized goal setting: A pilot study.

INTRODUCTION: Self-monitoring technologies produce patient-generated data that could be leveraged to personalize nutritional goal setting to improve population health; however, most computational approaches are limited when applied to individual-level personalization with sparse and irregular self-monitoring data. We applied informatics methods from expert suggestion systems to a challenging clinical problem: generating personalized nutrition goals from patient-generated diet and blood glucose data. MATERIALS AND METHODS: We applied qualitative process coding and decision tree modeling to understand how registered dietitians translate patient-generated data into recommendations for dietary self-management of diabetes (i.e., knowledge model). We encoded this process in a set of functions that take diet and blood glucose data as an input and output diet recommendations (i.e., inference engine). Dietitians assessed face validity. Using four patient datasets, we compared our inference engine's output to clinical narratives and gold standards developed by expert clinicians. RESULTS: To dietitians, the knowledge model represented how recommendations from patient data are made. Inference engine recommendations were 63 % consistent with the gold standard (range = 42 %-75 %) and 74 % consistent with narrative clinical observations (range = 63 %-83 %). DISCUSSION: Qualitative modeling and automating how dietitians reason over patient data resulted in a knowledge model representing clinical knowledge. However, our knowledge model was less consistent with gold standard than narrative clinical recommendations, raising questions about how best to evaluate approaches that integrate patient-generated data with expert knowledge. CONCLUSION: New informatics approaches that integrate data-driven methods with expert decision making for personalized goal setting, such as the knowledge base and inference engine presented here, demonstrate the potential to extend the reach of patient-generated data by synthesizing it with clinical knowledge. However, important questions remain about the strengths and weaknesses of computer algorithms developed to discern signal from patient-generated data compared to human experts.

Supporting dissertation work through a nursing PhD program federal grant writing workshop.

BACKGROUND: Nurse researchers need skills to secure external funding; therefore, we created a grant writing workshop for PhD students focused on the F31 Individual Fellowship and R36 Dissertation Grant. PURPOSE: Describe a nursing PhD program federal grant writing workshop and present participant impressions and outcomes. METHODS: We designed a three half-day workshop covering essential aspects of grant writing combined with mentor participation and follow-up. We assessed participant satisfaction in evaluations, subsequent grant submissions, project implementation, and time from PhD program entry to completion. FINDINGS: Evaluations were overwhelmingly positive. Seventeen of 29 (58.6%) participants submitted 21 applications; five (23.8%) were funded. The majority (75.0%) conducted the proposed dissertation project regardless of funding. Writing and submitting a grant did not increase time to program completion. DISCUSSION: The workshop efficiently supports PhD students' dissertation research. Timing and mentor participation are key for success. We recommend schools of nursing implement PhD program grant writing workshops.

Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

INTRODUCTION: Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and their parents. METHOD: Following forward and backward translation, Spanish-speaking child-parent dyads linguistically validated the translated instruments. Disease-specific and generic QOL perception of 28 child-parent dyads who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were analyzed by descriptive statistics, Mann-Whitney U test, absolute score differences, and minimal clinically important differences (MCID). RESULTS: The translated questionnaire required no further language changes. QOL scores were higher for Latino children and parents compared with non-Latinos, with score differences exceeding MCIDs for total scores and the majority of subscale scores. CONCLUSION: Spanish language PedsQL SCD instruments allow measurement of QOL in Spanish-speaking Latino children with SCD and their parents. Score differences for Latinos mostly exceeded MCIDs, suggesting that these differences are clinically meaningful. Confirmation of these findings is warranted.

How has DSM-5 Affected Autism Diagnosis? A 5-Year Follow-Up Systematic Literature Review and Meta-analysis.

We conducted a 5-year follow-up systematic review and meta-analysis to determine change in frequency of autism spectrum disorder (ASD) diagnosis since diagnostic and statistical manual 5 (DSM-5) publication and explore the impact of Social Communication Disorder (SCD). For 33 included studies, use of DSM-5 criteria suggests decreases in diagnosis for ASD [20.8% (16.0-26.7), p < 0.001], DSM-IV-TR Autistic Disorder [10.1% (6.2-16.0), p < 0.001], and Asperger's [23.3% (12.9-38.5), p = 0.001]; pervasive developmental disorder-not otherwise specified decrease was not significant [46.1% (34.6-58.0), p = 0.52]. Less than one-third [28.8% (13.9-50.5), p = 0.06] of individuals diagnosed with DSM-IV-TR but not DSM-5 ASD would qualify for SCD. Findings suggest smaller decreases in ASD diagnoses compared to earlier reviews. Future research is needed as concerns remain for impaired individuals without a diagnosis.

Factors Associated With Medication Engagement Among Older Adults With Diabetes: Systematic Review and Meta-Analysis.

Purpose The purpose of this systematic review and meta-analysis is to explore the factors associated with medication engagement among older adults (≥60 years) with diabetes. Methods Five databases (PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Scopus) were systematically searched to identify studies examining the association between factors and medication engagement among older diabetes patients. A study met inclusion for meta-analysis if the prevalence of medication engagement or factor was reported in ≥2 studies and the frequency or strength of association was either reported or able to be computed. Quality appraisal was performed with the Downs and Black tool. Results Of 538 retrieved studies, 33 (20 cohort and 13 cross-sectional) were included for systematic review; of these, 22 met criteria for meta-analysis. Findings from meta-analysis show that women (odds ratio [OR], 0.92; 95% CI, 0.86-0.97), those with depression (OR, 0.73; 95% CI, 0.62-0.87), and those with higher out-of-pocket spending for prescription drugs (OR, 0.87; 95% CI, 0.80-0.94) were less likely to take diabetes medication when compared with men, those without depression, and those with lower out-of-pocket costs, respectively. Older age (OR, 1.13; 95% CI, 1.00-1.27) was associated with better engagement to diabetes medication. Conclusions Of 4 identified factors, 2 are modifiable. Recent policy efforts to decrease the cost burden of prescribed medication for older adults, such as Medicare Part D, may remove this barrier to medication engagement. Routine screening for depression among older adults with diabetes should be included as part of usual care to facilitate an integrated treatment approach.

Personal discovery in diabetes self-management: Discovering cause and effect using self-monitoring data.

OBJECTIVE: To outline new design directions for informatics solutions that facilitate personal discovery with self-monitoring data. We investigate this question in the context of chronic disease self-management with the focus on type 2 diabetes. MATERIALS AND METHODS: We conducted an observational qualitative study of discovery with personal data among adults attending a diabetes self-management education (DSME) program that utilized a discovery-based curriculum. The study included observations of class sessions, and interviews and focus groups with the educator and attendees of the program (n = 14). RESULTS: The main discovery in diabetes self-management evolved around discovering patterns of association between characteristics of individuals' activities and changes in their blood glucose levels that the participants referred to as "cause and effect". This discovery empowered individuals to actively engage in self-management and provided a desired flexibility in selection of personalized self-management strategies. We show that discovery of cause and effect involves four essential phases: (1) feature selection, (2) hypothesis generation, (3) feature evaluation, and (4) goal specification. Further, we identify opportunities to support discovery at each stage with informatics and data visualization solutions by providing assistance with: (1) active manipulation of collected data (e.g., grouping, filtering and side-by-side inspection), (2) hypotheses formulation (e.g., using natural language statements or constructing visual queries), (3) inference evaluation (e.g., through aggregation and visual comparison, and statistical analysis of associations), and (4) translation of discoveries into actionable goals (e.g., tailored selection from computable knowledge sources of effective diabetes self-management behaviors). DISCUSSION: The study suggests that discovery of cause and effect in diabetes can be a powerful approach to helping individuals to improve their self-management strategies, and that self-monitoring data can serve as a driving engine for personal discovery that may lead to sustainable behavior changes. CONCLUSIONS: Enabling personal discovery is a promising new approach to enhancing chronic disease self-management with informatics interventions.

The Impact of Medicare Part D on the Proportion of Out-of-Pocket Prescription Drug Costs Among Older Adults With Diabetes.

OBJECTIVE: The purpose of this study was to evaluate the impact of Medicare Part D on reducing the financial burden of prescription drugs in older adults with diabetes. RESEARCH DESIGN AND METHODS: Using Medical Expenditure Panel Survey data (2000-2011), interrupted time series and difference-in-difference analyses were used to examine out-of-pocket costs for prescription drugs in 4,664 Medicare beneficiaries (≥65 years of age) compared with 2,938 younger, non-Medicare adults (50-60 years) with diabetes and to estimate the causal effects of Medicare Part D. RESULTS: Part D enrollment of Medicare beneficiaries with diabetes gradually increased from 45.7% (2006) to 52.4% (2011). Compared with years 2000-2005, out-of-pocket pharmacy costs decreased by 13.5% (SE 2.1) for all Medicare beneficiaries with diabetes following Part D implementation; on average, Part D beneficiaries had 5.3% (0.8) lower costs compared with those without Part D. Compared with a younger group with diabetes, out-of-pocket pharmacy costs decreased by 19.4% (1.7) for Medicare beneficiaries after Part D. Part D beneficiaries with diabetes who experienced the coverage gap decreased from 60.1% (2006) to 40.9% (2011) over this period. CONCLUSIONS: These findings demonstrate that although Medicare Part D has been effective in reducing the out-of-pocket cost burden of prescription drugs, approximately two out of five Part D beneficiaries with diabetes experienced the coverage gap in 2011. Future research is needed to examine the impact of Affordable Care Act provisions to close the coverage gap on the cost burden of prescription drugs for Medicare beneficiaries with diabetes.

Decreased fetal hemoglobin over time among youth with sickle cell disease on hydroxyurea is associated with higher urgent hospital use.

BACKGROUND: Hydroxyurea (HU) induces dose-dependent increased fetal hemoglobin (HbF) for sickle cell disease (SCD). Large deviation from historical personal best (PBest) HbF, a clinic-based version of maximum dose, may identify a subset with suboptimal HU adherence over time. PROCEDURE: Retrospective clinical data from youth ages 10-18 years prescribed HU at two centers were extracted from medical records at three time points: pre-HU initiation, PBest and a recent assessment. Decrease from PBest HbF of 20% or more at recent assessment despite stable dosing was designated as high deviation from PBest. Acute hospital use was compared between 1-year periods, pre-HU and ±6 months for PBest and recent assessment. Groups were compared using descriptive and bivariate nonparametric statistics. RESULTS: Seventy-five youth, mean HU duration 5.9 years, met eligibility criteria. Mean ages of HU initiation, PBest and recent assessment were 8.0, 10.9 and 13.9 years, respectively. Despite stable dosing, average HbF of 19.5% at PBest overall declined by 31.8% at recent assessment. PBest HbF declined by 11.7 and 40.1% in two groups, the latter comprised 70.7% of the sample, had lower pre-HU and recent HbF and higher dosing. They experienced more urgent hospital use during the year framing recent assessment than during PBest; these findings were supported by sensitivity analysis. CONCLUSIONS: Decline from PBest HbF is a novel approach to assess HU effectiveness, is common among youth and may represent suboptimal adherence. Larger prospective studies using additional adherence measures are needed to confirm our approach of tracking HbF deviation over time and to define an appropriate cutoff.

Data-driven health management: reasoning about personally generated data in diabetes with information technologies.

OBJECTIVE: To investigate how individuals with diabetes and diabetes educators reason about data collected through self-monitoring and to draw implications for the design of data-driven self-management technologies. MATERIALS AND METHODS: Ten individuals with diabetes (six type 1 and four type 2) and 2 experienced diabetes educators were presented with a set of self-monitoring data captured by an individual with type 2 diabetes. The set included digital images of meals and their textual descriptions, and blood glucose (BG) readings captured before and after these meals. The participants were asked to review a set of meals and associated BG readings, explain differences in postprandial BG levels for these meals, and predict postprandial BG levels for the same individual for a different set of meals. Researchers compared conclusions and predictions reached by the participants with those arrived at by quantitative analysis of the collected data. RESULTS: The participants used both macronutrient composition of meals, most notably the inclusion of carbohydrates, and names of dishes and ingredients to reason about changes in postprandial BG levels. Both individuals with diabetes and diabetes educators reported difficulties in generating predictions of postprandial BG; their predictions varied in their correlations with the actual captured readings from r = 0.008 to r = 0.75. CONCLUSION: Overall, the study showed that identifying trends in the data collected with self-monitoring is a complex process, and that conclusions reached by both individuals with diabetes and diabetes educators are not always reliable. This suggests the need for new ways to facilitate individuals' reasoning with informatics interventions.

Structured scaffolding for reflection and problem solving in diabetes self-management: qualitative study of mobile diabetes detective.

OBJECTIVE: To investigate subjective experiences and patterns of engagement with a novel electronic tool for facilitating reflection and problem solving for individuals with type 2 diabetes, Mobile Diabetes Detective (MoDD). METHODS: In this qualitative study, researchers conducted semi-structured interviews with individuals from economically disadvantaged communities and ethnic minorities who are participating in a randomized controlled trial of MoDD. The transcripts of the interviews were analyzed using inductive thematic analysis; usage logs were analyzed to determine how actively the study participants used MoDD. RESULTS: Fifteen participants in the MoDD randomized controlled trial were recruited for the qualitative interviews. Usage log analysis showed that, on average, during the 4 weeks of the study, the study participants logged into MoDD twice per week, reported 120 blood glucose readings, and set two behavioral goals. The qualitative interviews suggested that individuals used MoDD to follow the steps of the problem-solving process, from identifying problematic blood glucose patterns, to exploring behavioral triggers contributing to these patterns, to selecting alternative behaviors, to implementing these behaviors while monitoring for improvements in glycemic control. DISCUSSION: This qualitative study suggested that informatics interventions for reflection and problem solving can provide structured scaffolding for facilitating these processes by guiding users through the different steps of the problem-solving process and by providing them with context-sensitive evidence and practice-based knowledge related to diabetes self-management on each of those steps. CONCLUSION: This qualitative study suggested that MoDD was perceived as a useful tool in engaging individuals in self-monitoring, reflection, and problem solving.

Participatory approach to the development of a knowledge base for problem-solving in diabetes self-management.

OBJECTIVE: To develop an expandable knowledge base of reusable knowledge related to self-management of diabetes that can be used as a foundation for patient-centric decision support tools. MATERIALS AND METHODS: The structure and components of the knowledge base were created in participatory design with academic diabetes educators using knowledge acquisition methods. The knowledge base was validated using scenario-based approach with practicing diabetes educators and individuals with diabetes recruited from Community Health Centers (CHCs) serving economically disadvantaged communities and ethnic minorities in New York. RESULTS: The knowledge base includes eight glycemic control problems, over 150 behaviors known to contribute to these problems coupled with contextual explanations, and over 200 specific action-oriented self-management goals for correcting problematic behaviors, with corresponding motivational messages. The validation of the knowledge base suggested high level of completeness and accuracy, and identified improvements in cultural appropriateness. These were addressed in new iterations of the knowledge base. DISCUSSION: The resulting knowledge base is theoretically grounded, incorporates practical and evidence-based knowledge used by diabetes educators in practice settings, and allows for personally meaningful choices by individuals with diabetes. Participatory design approach helped researchers to capture implicit knowledge of practicing diabetes educators and make it explicit and reusable. CONCLUSION: The knowledge base proposed here is an important step towards development of new generation patient-centric decision support tools for facilitating chronic disease self-management. While this knowledge base specifically targets diabetes, its overall structure and composition can be generalized to other chronic conditions.

Adopting the sensemaking perspective for chronic disease self-management.

BACKGROUND: Self-monitoring is an integral component of many chronic diseases; however few theoretical frameworks address how individuals understand self-monitoring data and use it to guide self-management. PURPOSE: To articulate a theoretical framework of sensemaking in diabetes self-management that integrates existing scholarship with empirical data. METHODS: The proposed framework is grounded in theories of sensemaking adopted from organizational behavior, education, and human-computer interaction. To empirically validate the framework the researchers reviewed and analyzed reports on qualitative studies of diabetes self-management practices published in peer-reviewed journals from 2000 to 2015. RESULTS: The proposed framework distinguishes between sensemaking and habitual modes of self-management and identifies three essential sensemaking activities: perception of new information related to health and wellness, development of inferences that inform selection of actions, and carrying out daily activities in response to new information. The analysis of qualitative findings from 50 published reports provided ample empirical evidence for the proposed framework; however, it also identified a number of barriers to engaging in sensemaking in diabetes self-management. CONCLUSIONS: The proposed framework suggests new directions for research in diabetes self-management and for design of new informatics interventions for data-driven self-management.