Patient-centered Health Outcomes Research Articles

"We're Not Gonna Aid You in Shooting Up": Stigma's Relationship to Harm Reduction in People Who Inject Drugs.

Harm reduction, when applied to drug use, prioritizes improving patient-centered health outcomes and reducing drug-related harm. In order for harm reduction strategies to be adopted by people who inject drugs (PWID), they need to be promoted, accessible, and accepted in that population and the community-at-large. While PWID face stigma at multiple levels, less is known about how stigma influences uptake and acceptance of harm reduction services and strategies among PWID. We aim to characterize the stigmatizing experiences PWID have had related to harm reduction and the role of stigma in influencing their acceptance and adoption of harm reduction services and strategies. A qualitative study using in-person, semi-structured interviews. We recruited hospitalized participants, age 18 and over, with a history of injection drug use. We developed an interview guide asking about various aspects of stigma and participants' experiences with naloxone, syringe service programs, fentanyl test strips, HIV and hepatitis C testing, and any other harm reduction strategies. Key themes were generated using a thematic analysis. We reached thematic saturation at 16 participants. PWID reported multi-level stigma related to harm reduction from themselves, the public, the healthcare system, and the legal and carceral systems. Themes were grouped into four main categories: internalized, interpersonal, intervention, and structural stigma. Stigma across all of these domains negatively impacted the ability of PWID to access harm reduction resources. Positive, non-stigmatizing experiences from others, such as syringe service programs and peer navigators, countered historically negative experiences and promoted greater education and comfort about using harm reduction resources among PWID. To expand the reach of harm reduction services, it is critical to develop interventions that can reduce the stigma against PWID and harm reduction.

Generating Utilities for the Château-Santé Base: A Novel, Generic, and Patient-Centered Health-Outcome Measure

We have developed a new patient-centered, preference-based generic health-outcome measure, Château-Santé Base (CS-Base), which is based on a novel multiattribute preference response (MAPR) measurement framework. This study aimed to generate a first utility set for the CS-Base, making it suitable for use in health-economic evaluations. CS-Base comprises 12 health attributes: mobility, vision, hearing, cognition, mood, anxiety, pain, fatigue, social functioning, daily activities, self-esteem, and independence, each with 4 levels. Our methodology to generate utilities for the CS-Base was 2-fold. First, we derived coefficients from patient MAPR data to calculate CS-Base values. Subsequently, these were normalized to a 0.0 to 1.0 utility scale, in which 0.0 signifies dead. The dead position was estimated using general population data from a discrete choice experiment (discrete choice experiment+ dead), using a division-value strategy, which localize the position of states better or worse than dead. We analyzed MAPR data from 3222 patients and discrete choice experiment+ dead data from 1995 respondents. All MAPR coefficients were negative, logically ordered, and significantly different from the reference level. The dead position was denoted by a division value of-148.385. Utility values spanned from-0.071 to 1.0, and only 53 of 16 777 216 states were deemed worse than dead. This study introduced the first CS-Base utility set, underlining a 2-step utility derivation method. This method, blending societal and patient views, surpasses traditional preference-based approaches, yielding firmer results. However, improvement of the normalization procedure is expected. Estimating CS-Base utilities is an ongoing process that gains precision over time.

Enhancing Patient-Centered Care and Health Outcomes through Patient-Reported Outcome Measures

Patient-reported outcome measures (PROMs) have gained prominence as valuable tools for assessingpatient experiences and outcomes in healthcare. This article explores the role of PROMs in enhancingpatient-centered care, facilitating shared decision-making, and improving overall health outcomes. Theimplementation, benefits, challenges, and future prospects of PROMs are discussed

Digital Phenotyping for Monitoring and Disease Trajectory Prediction of Patients With Cancer: Protocol for a Prospective Observational Cohort Study.

Timely recognition of cancer progression and treatment complications is important for treatment guidance. Digital phenotyping is a promising method for precise and remote monitoring of patients in their natural environments by using passively generated data from sensors of personal wearable devices. Further studies are needed to better understand the potential clinical benefits of digital phenotyping approaches to optimize care of patients with cancer. We aim to evaluate whether passively generated data from smartphone sensors are feasible for remote monitoring of patients with cancer to predict their disease trajectories and patient-centered health outcomes. We will recruit 200 patients undergoing treatment for cancer. Patients will be followed up for 6 months. Passively generated data by sensors of personal smartphone devices (eg, accelerometer, gyroscope, GPS) will be continuously collected using the developed LAIMA smartphone app during follow-up. We will evaluate (1) mobility data by using an accelerometer (mean time of active period, mean time of exertional physical activity, distance covered per day, duration of inactive period), GPS (places of interest visited daily, hospital visits), and gyroscope sensors and (2) sociability indices (frequency of duration of phone calls, frequency and length of text messages, and internet browsing time). Every 2 weeks, patients will be asked to complete questionnaires pertaining to quality of life (European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire [EORTC QLQ-C30]), depression symptoms (Patient Health Questionnaire-9 [PHQ-9]), and anxiety symptoms (General Anxiety Disorder-7 [GAD-7]) that will be deployed via the LAIMA app. Clinic visits will take place at 1-3 months and 3-6 months of the study. Patients will be evaluated for disease progression, cancer and treatment complications, and functional status (Eastern Cooperative Oncology Group) by the study oncologist and will complete the questionnaire for evaluating quality of life (EORTC QLQ-C30), depression symptoms (PHQ-9), and anxiety symptoms (GAD-7). We will examine the associations among digital, clinical, and patient-reported health outcomes to develop prediction models with clinically meaningful outcomes. As of July 2023, we have reached the planned recruitment target, and patients are undergoing follow-up. Data collection is expected to be completed by September 2023. The final results should be available within 6 months after study completion. This study will provide in-depth insight into temporally and spatially precise trajectories of patients with cancer that will provide a novel digital health approach and will inform the design of future interventional clinical trials in oncology. Our findings will allow a better understanding of the potential clinical value of passively generated smartphone sensor data (digital phenotyping) for continuous and real-time monitoring of patients with cancer for treatment side effects, cancer complications, functional status, and patient-reported outcomes as well as prediction of disease progression or trajectories. PRR1-10.2196/49096.

Transitional Care in Patients with Heart Failure: A Concept Analysis Using Rogers' Evolutionary Approach.

The purpose of this study was to clarify the concept of transitional care in patients with heart failure. Transitional care is increasingly being applied in patients with heart failure, but the concept of transitional care in heart failure patients is not uniform and confused with other definitions, which limits further research and practice on transitional care for these patients. Rodgers' evolutionary concept analysis. A comprehensive literature search was conducted using the PUBMED, EMBASE, EBSCO, Chinese Biological Medicine (CBM), CNKI, and WANFANG databases (up to January 26, 2023). We used Rodgers' evolutionary concept analysis method to identify related concepts, attributes, antecedents, and consequences of transitional care in patients with heart failure. A total of 33 articles were included. The following attributes belonging to transitional care in patients with heart failure were extracted from the literature: self-care, multidisciplinary collaboration, and information transmission. The antecedents were patients' health status, the health literacy of patients and caregivers, the role functions of the main implementer and social and medical resources. Consequences were separated into two categories: patient-centered health outcomes (all-cause mortality, health-related quality of life, discharge preparedness, self-care behaviors, satisfaction of patients) and healthcare utilization outcomes (hospital readmission, length of hospital stay, emergency department visits). This study found that transitional care in heart failure patients is a systemic care process during a vulnerable period that improves patient self-management and coordination between hospital resources and social support systems for continuous management to promote smooth patient transitions between different locations. This concept analysis will inform healthcare providers in designing evidence-based interventions and quality improvement strategies to ensure that transition processes lead to desired outcomes. In addition, this study will also be helpful for developing specific assessment tools to identify patients with HF who need transitional care.

Population-Based Applications and Analytics Using Patient-Reported Outcome Measures.

The intersection of big data and artificial intelligence (AI) has resulted in advances in numerous areas, including machine learning, computer vision, and natural language processing. Although there are many potentially transformative applications of AI in health care, including precision medicine, this industry has been slow to adopt these technologies. At the same time, the operations of health care have historically been system-directed and physician-directed rather than patient-centered. The application of AI to patient-reported outcome measures (PROMs), which provide insight into patient-centered health outcomes, could steer research and healthcare delivery toward decisions that optimize outcomes important to patients. Historically, PROMs have only been collected within research registries. However, the increasing availability of PROMs within electronic health records has led to their inclusion in big data ecosystems, where they can inform or be informed by other data elements. The use of big data to analyze PROMs can help establish norms, evaluate data distribution, and determine proportions of patients achieving change or threshold standards. This information can be used for benchmarking, risk adjustment, predictive modeling, and ultimately improving the health of individuals and populations.

Syndemic conditions and quality of life in the PISCIS Cohort of people living with HIV in Catalonia and the Balearic Islands: a cross sectional study

BackgroundPeople living with HIV (PLWH) face structural and psychosocial factors that affect health-related quality of life (HRQoL). We aimed to evaluate how syndemic conditions affected HRQoL in PLWH.MethodsA cross-sectional survey was conducted among 861 PLWH, to determine whether syndemic conditions (monthly income; sexual satisfaction; depressive symptoms; social role satisfaction; social isolation; cognitive function; nicotine dependence; perception of stigma) have an effect on HRQoL. A linear regression model and measures of Additive Interaction (AI) were used to determine the effects of syndemic conditions on HRQoL, controlling for other risk factors.ResultsOverall, the most frequently observed were stigma perception (56.9%), poor cognitive function (50.6%) and the perception of social isolation (51.6%). The presence of depressive symptoms was the risk factor most associated with worse Physical Health (PH) (B 3.93, 2.71–5.15) and Mental Health (MH) (B 5.08, 3.81–6.34) in linear regression model. Specifically, an interaction was observed between poor cognitive function and poor satisfaction with social role on worse PH and MH (AI 2.08, 0.14–4.02; AI 2.69, 0.15–5.22, respectively); and low income and perception of stigma (AI 2.98, 0.26–5.71), low income and perception of social isolation (AI 2.79, 0.27–5.32), and low income and poor satisfaction with social role (AI 3.45, 0.99–5.91) on MH.ConclusionThese findings provide evidence that syndemic factors impact HRQoL. HIV prevention programs should screen and address co-occurring health problems to improve patient-centered health care and outcomes.

Twelve tips for implementing and teaching anti-racism curriculum in medical education

Racism has implicit and explicit manifestations that perpetuate disparities and negatively influence patient-centered health outcomes. Subsequently, a list of action items was provided to assist medical schools in becoming anti-racist institutions. A deep subject matter knowledge, beliefs, and reflections were a driving force for the management of medical schools or faculty members involved in undergraduate and postgraduate medical education to move forward toward inclusion of anti-racism in traditional medical curriculum or adapting existing training modules on diversity, equity, and inclusion. This paper proposes twelve practical and specific tips for implementing and teaching anti-racism in medical education. These twelve tips elaborate on the proposed actions for leaders in undergraduate and postgraduate medical education, valuable for designing future curricula and educational activities.

Climate mitigation and adaptation is cancer prevention and control

Climate change contributes to adverse outcomes and disruptions in cancer care with disproportionate impacts on specific populations. As the health effects of fossil fuel air pollution and planetary warming increase, transdisciplinary stakeholders across communities will be crucial to developing and implementing climate solutions as health solutions for patients affected by cancer. We provide a narrative review of four key themes at the intersection of climate change and cancer then describe potential opportunities to engage health care and community organizations, government agencies, public health entities, and clinicians dedicated to ensuring high quality cancer care for all. Through the review, we highlight that an expansion of climate-focused research funding and educational offerings for health professionals provides the foundation for ongoing action that can reduce health disparities, care disruptions, and health service demands while diminishing the carbon footprint of cancer care and improving patient-centered health outcomes. Lastly, we discuss lessons from the past that emphasize the importance of preparedness and swift action through scalable institutional, national, and international policies rooted in health, equity, and justice. We posit that through systematic and deliberate choice by those with decision making capabilities, climate mitigation and adaptation becomes cancer prevention and control.

Obesidad en adultos: guía de práctica clínica adaptada para Chile

The Chilean Society of Bariatric and Metabolic Surgery, together with other scientific societies, led a process for adapting the Canadian clinical practice guideline for obesity in adults for Chile. The aim of the Canadian guideline, among its main objectives, was to propose changes in obesity management using a chronic disease framework and focusing on improving patient-centered health outcomes, rather than focusing on weight loss alone. A group of 58 healthcare professionals applied the GRADE-Adolopment method to analyze and adapt the original recommendations and to create de novo recommendations. New recommendations were developed through a systematic review of the evidence using the Epistemonikos database and based on the GRADE-Evidence to Decision (EtD) framework. Seventy-six (76) of the 80 original recommendations were adopted, one recommendation was adapted, and 12 new recommendations were created. The adaptation process reduced the time needed to develop a Chilean clinical practice guideline for the management of obesity in adults. The change in obesity management approaches towards non-stigmatizing and patient-centered strategies focused on improving health outcomes and not solely on weight reduction is universal and it is possible to apply this approach in different countries and contexts.

Advancing patient-centered care: moving from outcome-based to risk factor-based models using the big four risk factors.

This article reimagines the health care system to focus on risk factors rather than outcomes in order to improve patient-centered care and reduce health care expenditure. Patient-centered care has been a global priority since 2001 when the Institute of Medicine declared it an essential aim for health care systems. As part of this discussion and to help facilitate this change, the concept of the big four risk factors - diet and nutrition; physical activity; smoking and tobacco use; and excessive alcohol consumption - is introduced in the context of the Americas from which it originates. Using peer-reviewed literature, health policy guidelines, theories, frameworks, and transdisciplinary implementation science strategies, this article explains how public health research and medical centers are set up in terms of disease, or outcome, rather than risk factor, or exposure. It suggests how moving from outcome-based health care models to focus on prevention using the big four risk factors will lead to better patient-centered care and health outcomes. Transdisciplinary research and complexity science, a framework largely developed and tested in Latin America, are recommended to facilitate this change and develop multicomponent, multistakeholder action and cooperation. Future research should pilot the proposed changes at various health-system levels and in different settings and report on the outcomes of implementation to assess effectiveness and improve translation of research, perhaps using the standardized RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) evaluation framework.

The impact of perioperative stroke and delirium on outcomes after surgical aortic valve replacement

The effects of stroke and delirium on postdischarge cognition and patient-centered health outcomes after surgical aortic valve replacement (SAVR) are not well characterized. Here, we assess the impact of postoperative stroke and delirium on these health outcomes in SAVR patients at 90days. Patients (N=383) undergoing SAVR (41% received concomitant coronary artery bypass graft) enrolled in a randomized trial of embolic protection devices underwent serial neurologic and delirium evaluations at postoperative days 1, 3, and 7 and magnetic resonance imaging at day 7. Outcomes included 90-day functional status, neurocognitive decline from presurgical baseline, and quality of life. By postoperative day 7, 25 (6.6%) patients experienced clinical stroke and 103 (28.5%) manifested delirium. During index hospitalization, time to discharge was longer in patients experiencing stroke (hazard ratio, 0.62; 95% confidence interval [CI], 0.42-0.94; P=.02) and patients experiencing delirium (hazard ratio, 0.68; 95% CI, 0.54-0.86; P=.001). At day 90, patients experiencing stroke were more likely to have a modified Rankin score >2 (odds ratio [OR], 5.9; 95% CI, 1.7-20.1; P=.01), depression (OR, 5.3; 95% CI, 1.6-17.3; P=.006), a lower 12-Item Short Form Survey physical health score (adjusted mean difference -3.3±1.9; P=.08), and neurocognitive decline (OR, 7.8; 95% CI, 2.3-26.4; P=.001). Delirium was associated with depression (OR, 2.2; 95% CI, 0.9-5.3; P=.08), lower 12-Item Short Form Survey physical health (adjusted mean difference -2.3±1.1; P=.03), and neurocognitive decline (OR, 2.2; 95% CI, 1.2-4.0; P=.01). Stroke and delirium occur more frequently after SAVR than is commonly recognized, and these events are associated with disability, depression, cognitive decline, and poorer quality of life at 90days postoperatively. These findings support the need for new interventions to reduce these events and improve patient-centered outcomes.

Impact of Hospital-Based Rehabilitation Services on Discharge to the Community by Value-Based Payment Programs After Joint Replacement Surgery.

The purpose of this study was to examine the impact of hospital-based rehabilitation services on community discharge rates after hip and knee replacement surgery according to hospital participation in value-based care models: bundled payments for care improvement (BPCI) and comprehensive care for joint replacement (CJR). The secondary objective was to determine whether community discharge rates after hip and knee replacement surgery differed by participation in these models. A secondary analysis of Medicare fee-for-service claims was conducted for beneficiaries 65years of age or older who underwent hip and knee replacement surgery from 2016 to 2017. Independent variables were hospital participation in value-based programs categorized as: (1) BPCI, (2) CJR, and (3) non-BPCI/CJR; and total minutes per day of hospital-based rehabilitation services categorized into tertiles. The primary outcome variable was discharged to the community versus discharged to institutional post-acute care settings. The association between rehabilitation amount and community discharge among BPCI, CJR, and non-BPCI/CJR hospitals was adjusted for patient-level clinical and hospital characteristics. Participation in BPCI or CJR was not associated with community discharge. This analysis found a dose-response relationship between the amount of rehabilitation services and odds of community discharge. Among those who received a hip replacement, this relationship was most pronounced in the BPCI group; compared with the low rehabilitation category, the medium category had odds ratio (OR) = 1.28 (95% CI = 1.17 to 1.41), and the high category had OR = 1.90 (95% CI = 1.71 to 2.11). For those who received a knee replacement, there was a dose-response relationship in the CJR group only; compared with the low rehabilitation category, the medium category had OR = 1.21 (95% CI = 1.15 to 1.28), and the high category had OR = 1.56 (95% CI = 1.46 to 1.66). Regardless of hospital participation in BPCI or CJR models, higher amounts of rehabilitation services delivered during acute hospitalization is associated with a higher likelihood of discharge to community following hip and knee replacement surgery. In the era of value-based care, frontloading of rehabilitation care is vital for improving patient-centered health outcomes in acute phases of lower extremity joint replacement.

Redefining Success After Liver Transplantation: From Mortality Toward Function and Fulfillment.

Liver transplantation (LT), the only cure for end-stage liver disease, is a lifesaving, costly, and limited resource. LT recipients (LTRs) are aging with an increasing burden of medical comorbidities. Patient and graft survival rates exceed 70% at 5years; however, patient-centered health outcomes beyond survival have received relatively little attention. LTRs must have strong self-management skills to navigate health systems, adhere to clinical monitoring, and take complex, multidrug regimens. All of these tasks require formidable cognitive abilities for active learning and problem solving. Yet, LTRs are at higher risk for impaired cognition as a result of the high prevalence of pretransplant hepatic encephalopathy, multiple chronic conditions, alcohol use, physical frailty, sarcopenia, and older age. Cognitive impairment after transplant may persist and has been causally linked to poor self-management skills, worse physical function, and inferior health outcomes in other health care settings, yet its impact after LT is largely unknown. There is a need to study potentially modifiable, posttransplant targets including caregiver support, physical activity, sleep, and treatment adherence to inform future health system responses to promote the long-term health and well-being of LTRs. Prospective, longitudinal data collection that encompasses key sociodemographic, cognitive-behavioral, psychosocial, and medical factors is needed to improve risk prediction and better inform patient and caregiver expectations. Interventions with proactive monitoring, reducing medical complexity, and improved care coordination can be tailored to optimize posttransplant care. We propose a research agenda focused on understudied, potentially modifiable risk factors to improve the long-term health of LTRs. Our conceptual model accounts for cognitive function, caregiver and patient self-management skills, health behaviors, and patient-centered outcomes beyond mortality. We propose actionable health-system, patient, and caregiver-directed interventions to fill knowledge gaps and improve outcomes.

Outcomes of Ottawa, Canada's Managed Opioid Program (MOP) where supervised injectable hydromorphone was paired with assisted housing.

The Ottawa Inner City Health's Managed Opioid Program is the first, to our knowledge, to pair injectable opioid agonist hydromorphone treatment with assisted housing for people experiencing homelessness with severe opioid use disorder (OUD) and injection drug use. We aimed to describe this program and evaluate retention, health, and social wellbeing outcomes. We retrospectively assessed the first cohort of clients enrolled in the Managed Opioid Program between August 2017-2018. The primary outcome was retention at 12 months. Secondary outcomes included injectable and oral opioid dose titration, non-prescribed opioid use, overdoses, connection with behavioural health services, and social well-being. Descriptive statistics were used to summarize baseline demographics and secondary outcomes. Actuarial survival analysis was used to assess retention among participants. The study sample included 26 participants: median age was 36 years, 14 were female, 22 were White, eight had alcohol use disorders, 25 had stimulant use disorders, and all had a history of concurrent psychiatric illness. Retention at 12 months was 77% (95% CI 62-95). Throughout the first-year participants' opioid treatment doses increased. The median daily dose of injectable hydromorphone was 36mg [17-54mg] and 156mg [108-188mg] at enrollment and one year respectively. The median daily dose of oral opioid treatment was 120-milligram morphine equivalents [83-180 mg morphine equivalents] and 330-milligram morphine equivalents [285-428 mg morphine equivalents] at enrollment and one year respectively. Over half had no overdoses and there were no deaths among participants who remained enrolled. At one year, 45% stopped non-prescribed opioid use, 96% connected to behavioral health services, 73% reconnected with estranged families, and 31% started work or vocational programs. Individuals with severe OUD engaged in injectable hydromorphone treatment and housing showed high retention in care and substantive improvements in patient-centered health and social well-being outcomes.

Bayesian Hierarchical Factor Analysis for Efficient Estimation Across Race/Ethnicity

Patient reported outcomes are gaining more attention in patient-centered health outcomes research and quality of life studies as important indicators of clinical outcomes, especially for patients with chronic diseases. Factor analysis is ideal for measuring patient reported outcomes. If there is heterogeneity in the patient population and when sample size is small, differential item functioning and convergence issues are challenges for applying factor models. Bayesian hierarchical factor analysis can assess health disparity by assessing for di˙erential item functioning, while avoiding convergence problems. We conducted a simulation study and used an empirical example with American Indian minorities to show thatffitting a Bayesian hierarchical factor model is an optimal solution regardless of heterogeneity of population and sample size.

Multiplexed technologies for sexually transmitted infections: global evidence on patient-centered and clinical health outcomes

IntroductionConventional care packages around screening for sexually transmitted infections (STIs) entail multiple clinic visits and precipitate losses to follow-up. To prevent these losses, multiplexed technologies for STIs (immunochromatographic tests/devices/assays and...

Interprofessional education-relevant accreditation standards in Canada: a comparative document analysis

BackgroundIncreasing evidence suggests that sustainable delivery of interprofessional education (IPE) has the potential to lead to interprofessional collaborative practice (IPCP), which in turn has the potential to lead to enhanced healthcare systems and improved patient-centered care health outcomes. To enhance IPE in Canada, the Accreditation of Interprofessional Health Education (AIPHE) project initiated collaborative efforts among accrediting organizations of six health professions to embed IPE language into their respective accreditation standards. To further understand the impact of the AIPHE project, this study evaluated the accountability of the IPE language currently embedded in Canadian health professions’ accreditation standards documents and examined whether such language spanned the five accreditation standards domains identified in the AIPHE project.MethodsWe conducted a comparative content analysis to identify and examine IPE language within the “accountable” statements in the current accreditation standards for 11 Canadian health professions that met our eligibility criteria.Results and discussionA total of 77 IPE-relevant accountable statements were identified across 13 accreditation standards documents for the 11 health professions. The chiropractic, pharmacy, and physiotherapy documents represented nearly 50% (38/77) of all accountable statements. The accountable statements for pharmacy, dentistry, dietetics, and nursing (registered) spanned across three-to-four accreditation standards domains. The remaining nine professions’ statements referred mostly to “Students” and “Educational program.” Furthermore, the majority of accreditation standards documents failed to provide a definition of IPE, and those that did, were inconsistent across health professions.ConclusionsIt was encouraging to see frequent reference to IPE within the accreditation standards of the health professions involved in this study. The qualitative findings, however, suggest that the emphasis of these accountable statements is mainly on the students and educational program, potentially compromising the sustainability and development, implementation, and evaluation of this frequently misunderstood pedagogical approach. The findings and exemplary IPE-relevant accountable statements identified in this paper should be of interest to all relevant stakeholders including those countries, where IPE accreditation is still emerging, as a means to accelerate and strengthen achieving desired educational and health outcomes.

Use of Wise Device Technology to Measure Adherence to Hydroxyurea Therapy in Youth With Sickle Cell Disease.

Despite broad support for hydroxyurea (HU) therapy, suboptimal adherence is reported for youth with sickle cell disease. Valid adherence measurement is crucial to understanding the relationship between medication behavior, disease response, and patient-centered health outcomes. The current pilot study examined the feasibility of the Wise electronic device for longitudinal HU adherence measurement in a sample of 36 youths prescribed HU. The study also explored the association between HU adherence, as measured by the Wise device, with other adherence measures (ie, family report, lab values, pill count, and medication possession ratio). A measure of family-reported acceptability was also completed. Overall, results supported the feasibility of the Wise device (rate of consent=82%, device use=75%, device failure=3%) for HU adherence measurement and most families rated their experience using their device positively (favorable responses ranged from 67% to 100%). Associations between HU adherence, as measured by the Wise device, and other adherence measures were not significant. Overall, the feasibility was supported. The Wise device allows longitudinal measurement of adherence with HU from initiation as a young child (ie, with liquid formulations) through adolescence and provides a novel means of adherence measurement for both clinical and research use.

Relationship Between Patient Engagement and Depressive Symptoms Among People Living With HIV in a Mobile Health Intervention: Secondary Analysis of a Randomized Controlled Trial.

BackgroundAssociations between higher levels of patient engagement and better health outcomes have been found in face-to-face interventions; studies on such associations with mobile health (mHealth) interventions have been limited and the results are inconclusive.ObjectiveThe objective of this study is to investigate the relationship between patient engagement in an mHealth intervention and depressive symptoms using repeated measures of both patient engagement and patient outcomes at 4 time points.MethodsData were drawn from a randomized controlled trial (RCT) of an mHealth intervention aimed at reducing depressive symptoms among people living with HIV and elevated depressive symptoms. We examined the association between patient engagement and depressive symptoms in the intervention group (n=150) where participants received an adapted cognitive-behavioral stress management (CBSM) course and physical activity promotion on their WeChat social media app. Depressive symptoms were repeatedly measured using the Patient Health Questionnaire (PHQ-9) at baseline and 1 month, 2 months, and 3 months. Patient engagement was correspondingly measured by the completion rate, frequency of items completed, and time spent on the program at 1 month, 2 months, and 3 months. Latent growth curve models (LGCMs) were used to explore the relationship between patient engagement and depressive symptoms at multiple time points in the intervention.ResultsThe mean PHQ-9 scores were 10.2 (SD 4.5), 7.7 (SD 4.8), 6.5 (SD 4.7), and 6.7 (SD 4.1) at baseline, 1 month, 2 months, and 3 months, respectively. The mean completion rates were 50.6% (SD 31.8%), 51.5% (SD 32.2%), and 50.8% (SD 33.7%) at 1, 2, and 3 months, respectively; the average frequencies of items completed were 18.0 (SD 14.6), 32.6 (SD 24.8), and 47.5 (SD 37.2) at 1, 2, and 3 months, respectively, and the mean times spent on the program were 32.7 (SD 66.7), 65.4 (SD 120.8), and 96.4 (SD 180.4) minutes at 1, 2, and 3 months, respectively. LGCMs showed good model fit and indicated that a higher completion rate (β at 3 months=–2.184, P=.048) and a greater frequency of items completed (β at 3 months=–0.018, P=.04) were associated with fewer depressive symptoms at 3 months. Although not significant, similar trends were found in the abovementioned relationships at 1 and 2 months. There was no significant relationship between time spent on the program and depressive symptoms.ConclusionsThis study revealed a positive association between patient engagement and health outcomes at 3 months of an mHealth intervention using LGCMs and repeated measures data. The results underscore the importance of improving patient engagement in mHealth interventions to improve patient-centered health outcomes.Trial RegistrationChinese Clinical Trial Registry ChiCTR-IPR-17012606; https://tinyurl.com/yxb64mefInternational Registered Report Identifier (IRRID)RR2-10.1186/s12889-018-5693-1