INNV-41. MY STORI – A SYMPTOM TRACKING AND REPORTING INSTRUMENT MOBILE APPLICATION FOR BRAIN TUMOR PATIENTS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi114-vi114
Author(s):  
Orieta Celiku ◽  
Kristin Odom ◽  
Mahendar Ramidi ◽  
Terri Armstrong

Abstract INTRODUCTION Managing symptom burden is an integral part of brain tumor patient care, but tools to facilitate tracking symptoms and self-management for this population are lacking. Reporting is often limited to self-report as part of clinical follow-up care, or episodic between visits if symptoms are severe. While general-purpose and cancer-specific mobile applications that track medical symptoms are becoming more prevalent, they may not cover the entire range of symptoms experienced by patients with brain tumors or allow tracking of self-management strategies. METHODS We developed an iOS operating system mobile application using Apple’s UIKit, Foundation, WebKit, and Core Graphics frameworks. Core Data and iCloud were used to implement local and cloud-based data storage for personal use. Findings from our Outcomes Surveys informed selection of core symptoms to track. A multidisciplinary team of neuro-oncology scientists, providers, and communication specialists developed self-care content from evidence-based sources. RESULTS We developed My STORI, a free mobile application to capture the experiences of brain tumor patients. Patients and their family members can track daily symptoms and their impact on function and record any actions that were taken to mitigate them. Evidence-based self-care information on how to recognize, manage, and report symptoms is provided. Graphical summaries of how these symptoms evolve over time, and how they are impacted by clinical appointments, treatment, and self-care activities can be displayed and compiled into reports that can be shared with their care team, family, or health care record. CONCLUSIONS Mobile applications have the potential to promote self-care, facilitate symptom management, and enable intuitive, frequent, and convenient reporting of clinically relevant data to the health-care team. The My STORI application is an innovation in patient care guided by evidence-based research and can be used to track symptom management, promote self-care, and enhance communication to improve clinical care and research.

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi112-vi112
Author(s):  
Molly Maher ◽  
Kristin Odom ◽  
Alvina Acquaye ◽  
Orieta Celiku ◽  
Brittany Cordeiro ◽  
...  

Abstract BACKGROUND Primary CNS tumors represent less than 2% of all cancers, with the majority of patients receiving care outside of specialty centers. Patients are highly symptomatic while trying to navigate care for their rare disease and evidence-based tumor and symptom education is limited. Our primary objective was to create and disseminate patient-centered content utilizing multidisciplinary teams and health communication to improve access to content. METHODS The multidisciplinary team of neuro-oncology scientists and health care providers developed content from evidence-based sources. The team partnered with communication specialists to ensure health literacy and established outreach strategies for use on social media, e-newsletters, and web- and app-based programs. Web analytic tools assessed outreach and efficacy. RESULTS Educational content for 12 rare tumors and 6 self-care topics was created using evidence-based sources and multidisciplinary team review. Content was published on the National Cancer Institute Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) website and disseminated via multimedia platforms, including e-newsletters and social media (private Facebook group and Twitter). Since launching the website in September 2018, visits have increased 2,384%. The content was also shared directly to 6,156 newsletter subscribers, 4,897 Twitter followers with greater than 1 million impressions per year, 407 Facebook members, 9 non-profit advocacy partners, and thousands of attendees at more than 10 patient-focused neuro-oncology events. This outreach approach is now being replicated for symptom management content on the NCI-CONNECT website and a symptom tracking and self-care mobile application launching in 2021. CONCLUSIONS By marrying patient-centered health communication, education, and outreach, our team successfully created highly sought content that reflects the unique needs of CNS tumor patients and their families. This material can educate neuro-oncology patients on their specific tumor, promote self-care, facilitate symptom management, and empower families to advocate for their unique needs, reaching outside traditional health care systems.


2020 ◽  
Author(s):  
Michael P. Dorsch ◽  
Karen B. Farris ◽  
Brigid E. Rowell ◽  
Scott L. Hummel ◽  
Todd M. Koelling

BACKGROUND Successful management of heart failure (HF) involves guideline based medical therapy as well as self-care behavior. As a result, the management of HF is moving toward a proactive real-time technological model of assisting patients with monitoring and self-management. OBJECTIVE Evaluate the effectiveness of a mobile application intervention that enhances self-monitoring on health-related quality of life, self-management, and reduces HF readmissions. METHODS A single-center randomized controlled trial was performed. Patients greater than 45 years of age and admitted for acute decompensated HF or recently discharged in the past 4 weeks were included. The intervention group used a mobile application (App). The intervention prompted daily self-monitoring and promoted self-management. The control group (No App) received usual care. The primary outcome was the change in Minnesota Living with Heart Failure Questionnaire (MLHFQ) from baseline to 6 and 12 weeks. Secondary outcomes were the Self-Care Heart Failure Index (SCHFI) questionnaire and recurrent HF admissions. RESULTS Eighty-three patients were enrolled and completed all baseline assessments. Baseline characteristics were similar between groups with the exception of HF etiology. The App group had a reduced MLHFQ at 6 weeks (37.5 ± 3.5 vs. 48.2 ± 3.7, P=0.039) but not at 12 weeks (44.2 ± 4 vs. 45.9 ± 4, P=0.778) compared to No App. There was no effect of the App on the SCHFI at 6 or 12 weeks. The time to first HF admission was not statistically different between the App versus No App groups (HR 0.89, 95% CI 0.39-2.02, P=0.781) over 12 weeks. CONCLUSIONS The mobile application intervention improved MLHFQ at 6 weeks, but did not sustain its effects at 12 weeks. No effect was seen on HF self-care. Further research is needed to enhance engagement in the application for a longer period of time and to determine if the application can reduce HF admissions in a larger study. CLINICALTRIAL NCT03149510


2021 ◽  
Vol 2 (1) ◽  
Author(s):  
Agnes T. Black ◽  
Marla Steinberg ◽  
Amanda E. Chisholm ◽  
Kristi Coldwell ◽  
Alison M. Hoens ◽  
...  

Abstract Background The KT Challenge program supports health care professionals to effectively implement evidence-based practices. Unlike other knowledge translation (KT) programs, this program is grounded in capacity building, focuses on health care professionals (HCPs), and uses a multi-component intervention. This study presents the evaluation of the KT Challenge program to assess the impact on uptake, KT capacity, and practice change. Methods The evaluation used a mixed-methods retrospective pre-post design involving surveys and review of documents such as teams’ final reports. Online surveys collecting both quantitative and qualitative data were deployed at four time points (after both workshops, 6 months into implementation, and at the end of the 2-year funded projects) to measure KT capacity (knowledge, skills, and confidence) and impact on practice change. Qualitative data was analyzed using a general inductive approach and quantitative data was analyzed using non-parametric statistics. Results Participants reported statistically significant increases in knowledge and confidence across both workshops, at the 6-month mark of their projects, and at the end of their projects. In addition, at the 6-month check-in, practitioners reported statistically significant improvements in their ability to implement practice changes. In the first cohort of the program, of the teams who were able to complete their projects, half were able to show demonstrable practice changes. Conclusions The KT Challenge was successful in improving the capacity of HCPs to implement evidence-based practice changes and has begun to show demonstrable improvements in a number of practice areas. The program is relevant to a variety of HCPs working in diverse practice settings and is relatively inexpensive to implement. Like all practice improvement programs in health care settings, a number of challenges emerged stemming from the high turnover of staff and the limited capacity of some practitioners to take on anything beyond direct patient care. Efforts to address these challenges have been added to subsequent cohorts of the program and ongoing evaluation will examine if they are successful. The KT Challenge program has continued to garner great interest among practitioners, even in the midst of dealing with the COVID-19 pandemic, and shows promise for organizations looking for better ways to mobilize knowledge to improve patient care and empower staff. This study contributes to the implementation science literature by providing a description and evaluation of a new model for embedding KT practice skills in health care settings.


2021 ◽  
Author(s):  
JuHee Hee ◽  
Insun Yeom ◽  
Misook Lee Chung ◽  
Yielin Kim ◽  
Subin Yoo ◽  
...  

BACKGROUND Self-care is essential for people with Parkinson disease (PD) to minimize their disability and adapt to alterations in physical abilities due to progressive neurodegenerative disorder. With rapid developments in mobile technology, many health-related mobile applications for PD have been developed and utilized. However, insufficient research has investigated mobile application-based self-care in PD. OBJECTIVE This study aimed to explore the features and characteristics of the utilization of mobile applications for self-care in people with PD. METHODS This study was performed sequentially according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. Referred databases are PubMed, Embase, CINAHL, Cochrane Library, Web of Science and PsycINFO in consultation with a librarian on June 8, 2021. We used keywords including ‘Parkinson disease’ and ‘mobile.’ RESULTS A total of 17 studies were selected by the inclusion criteria, including 3 randomized controlled trials and 14 observational studies/quasi-experimental studies. The utilization of mobile applications for self-care in people with PD focused on symptom monitoring, especially tracking motor symptoms. Motor symptoms were objectively measured mainly through the sensors of smartphones or wearable devices and task performance. Non-motor symptoms were monitored through task performance or self-reported questionnaires in mobile applications. Most studies focused on clinical symptom assessment in people with PD, and there was a lack of studies focusing on symptom management. CONCLUSIONS Mobile applications for people with PD have been developed and utilized, but strategies for self-management are insufficient. We recommend the development of mobile applications focused on self-care that can enhance symptom management and health promotion practices. Studies should also evaluate the effects of mobile applications on symptom improvement and quality of life in people with PD. CLINICALTRIAL PROSPERO International Prospective Register of Systematic Reviews CRD42021267374.


2019 ◽  
Author(s):  
Jonathan Charles Rawstorn ◽  
Kylie Ball ◽  
Brian Oldenburg ◽  
Clara K Chow ◽  
Sarah A McNaughton ◽  
...  

BACKGROUND Alternative evidence-based cardiac rehabilitation (CR) delivery models that overcome significant barriers to access and delivery are needed to address persistent low utilization. Models utilizing contemporary digital technologies could significantly improve reach and fidelity as complementary alternatives to traditional center-based programs. OBJECTIVE The aim of this study is to compare the effects and costs of the innovative <i>Smartphone Cardiac Rehabilitation, Assisted self-Management</i> (SCRAM) intervention with usual care CR. METHODS In this investigator-, assessor-, and statistician-blinded parallel 2-arm randomized controlled trial, 220 adults (18+ years) with coronary heart disease are being recruited from 3 hospitals in metropolitan and regional Victoria, Australia. Participants are randomized (1:1) to receive advice to engage with usual care CR or the SCRAM intervention. SCRAM is a 24-week dual-phase intervention that includes 12 weeks of real-time remote exercise supervision and coaching from exercise physiologists, which is followed by 12 weeks of data-driven nonreal-time remote coaching via telephone. Both intervention phases include evidence- and theory-based multifactorial behavior change support delivered via smartphone push notifications. Outcomes assessed at baseline, 12 weeks, and 24 weeks include maximal aerobic exercise capacity (primary outcome at 24 weeks), modifiable cardiovascular risk factors, exercise adherence, secondary prevention self-management behaviors, health-related quality of life, and adverse events. Economic and process evaluations will determine cost-effectiveness and participant perceptions of the treatment arms, respectively. RESULTS The trial was funded in November 2017 and received ethical approval in June 2018. Recruitment began in November 2018. As of September 2019, 54 participants have been randomized into the trial. CONCLUSIONS The innovative multiphase SCRAM intervention delivers real-time remote exercise supervision and evidence-based self-management behavioral support to participants, regardless of their geographic proximity to traditional center-based CR facilities. Our trial will provide unique and valuable information about effects of SCRAM on outcomes associated with cardiac and all-cause mortality, as well as acceptability and cost-effectiveness. These findings will be important to inform health care providers about the potential for innovative program delivery models, such as SCRAM, to be implemented at scale, as a complement to existing CR programs. The inclusion of a cohort comprising metropolitan-, regional-, and rural-dwelling participants will help to understand the role of this delivery model across health care contexts with diverse needs. CLINICALTRIAL Australian New Zealand Clinical Trials Registry (ACTRN): 12618001458224; anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374508. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/15022


2021 ◽  
Author(s):  
Lucija Gosak ◽  
Majda Pajnkihar ◽  
Gregor Štiglic

BACKGROUND Chronic diseases are an important public health issue worldwide and affect an individual's quality of life. Due to the alarming rise in type 2 diabetes, healthcare, which was previously largely focused primarily on diagnosis and treatment of the disease, is increasingly focused on prevention and self-care. Patients who adhere to a constant and strict treatment regimen (physical activity, diet, medication) and regularly monitor their health, maintain self-care and health, prevent exacerbation of the disease and prevent complications of diabetes (retinopathy, diabetic feet). Many innovative devices that have become increasingly present in patient health care in recent years, such as mobile applications, are available to patients to maintain consistency in monitoring their health status. Mobile applications make it easier for individuals to monitor their self-care, monitor illness, and make it easier to follow instructions regarding disease control. OBJECTIVE The study aim is to determine the impact of mobile application use on self-care in patients with type 2 diabetes. The aim of the study is also to evaluate and test the usefulness of the forDiabetes application as a tool to improve the self-care of individuals with type 2 diabetes. METHODS We will perform a double-blind randomized controlled trial. The study will include individuals over the age of 18 who have been diagnosed and have regulated type 2 diabetes, who have already received oral treatment and are being treated in family medicine practice. Also, individuals included in the study should not have any acute complications due to the consequences of type 2 diabetes. During the study, they should be able to use an Android or iOS mobile phone and a blood glucose meter. With the help of simple randomization, individuals will be divided into an intervention and a control group. Individuals in the intervention group will use the forDiabetes mobile app to monitor their self-care for type 2 diabetes. Individuals in the control group will not receive a special intervention. Data will be collected using the “Self-care of Diabetes Inventory” questionnaire and a “Brief Illness Perception Questionnaire”. Blood sugar, blood pressure, HbA1c, and weight measurements will be monitored using the calibrated instruments during the study by the nurses employed in family medicine practice. Data will be collected at the beginning of the study and after the patient visit to the family medicine practice. RESULTS The expected results as a result of using the mobile application forDiabetes are the impact on the level of self-care, the impact on the perception of the disease, blood sugar levels, blood pressure, HbA1c, and the measured body weight of the patient. CONCLUSIONS The research contributes to greater visibility and usability of mobile applications for self-care of patients with type 2 diabetes and makes aware of the possible use of innovative methods. CLINICALTRIAL NCT04999189


2020 ◽  
Vol 46 (2) ◽  
pp. 139-160 ◽  
Author(s):  

Purpose The AADE7 Self-Care Behaviors® (AADE7) is a robust framework for self-management of diabetes and other related conditions, such as prediabetes and cardiometabolic diseases. It is the position of the American Association of Diabetes Educators (AADE) that, at the cornerstone of diabetes self-management education and support, the AADE7 is the framework for achieving behavior change that leads to effective self-management through improved behavior and clinical outcome measures. The AADE7 model guides the health care team in effective person-centered collaboration and goal setting to achieve health-related outcomes and improved quality of life. Continued research and evidence are critical to expand this model and broaden its application to other chronic conditions. Given the advances in the science of diabetes management, as well as in diabetes self-management education and support, AADE has evaluated the AADE7 within the framework of these advances, including the digital and dynamic health care landscape. Conclusion This revised position statement blends the updates in research and AADE’s vision and expansion beyond diabetes to refresh the AADE7 framework. This revision reflects the perspectives of all members of the health care team as they problem solve with individuals who are at risk for or who have diabetes and related conditions to achieve healthier outcomes.


2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 236-236
Author(s):  
Justin D. Smith ◽  
Sofia F. Garcia ◽  
Frank J. Penedo ◽  
Denise M. Scholtens ◽  
Betina Yanez ◽  
...  

236 Background: Oncology outpatients can facesignificant cancer- and treatment-related symptoms that compromise health related quality of life and quality health care. Although the burden of symptoms on patients’ lives are well-known, most health care systems are not ideally set up to relieve them. Patients are not typically drawn into meaningful engagement with the health care team in ways that enable symptom self-management. As a result, opportunities for early identification and treatment are lost, causing avoidable human suffering and cost. The Northwestern University IMPACT (NU IMPACT) project aims to evaluate the effectiveness and implementation of an informatics-driven symptom monitoring and web-based self-management intervention. The project uses PROMIS measures, integrated into the EHR, to trigger response and intervention. This presentation describes the effectiveness-implementation hybrid trial design and measurement of implementation. Methods: NU IMPACT will test the effectiveness and implementation of a system-wide symptom management intervention, across six adult hematology/oncology and gynecologic oncology outpatient clinics at Northwestern Memorial HealthCare, using a cluster randomized pragmatic roll-out implementation trial with an embedded individual-level randomized clinical trial. This unique design allows for a fully-powered randomized trial to establish the efficacy of the intervention, as well as a randomized test of implementation. We are enrolling approximately 6,000 patients in pre-implementation and 6,000 in post-implementation, with half of the latter group randomly assigned to enhanced symptom management, and the other half to usual care. Results: Implementation process is guided by the Exploration, Preparation, Implementation, and Sustainment (EPIS) model with evaluation following the RE-AIM framework. Particular focus is paid to adoption at the clinic and provider levels, the extent to which the intervention achieves meaningful reach to cancer patients, and the potential for sustainment. Additionally, we are testing and validating a newly developed method for tracking and reporting dynamic changes to implementation strategies. Conclusions: Achieving the aims of the NU IMPACT project is a critical step in the advancement of informatics-driven symptom management interventions for cancer patients. The innovative implementation trial design and measurement approach will aid in the rapid translation of findings to other healthcare systems. Clinical trial information: NCT03988543 .


2019 ◽  
Author(s):  
Thomas Timmers ◽  
Loes Janssen ◽  
Walter van der Weegen ◽  
Dirk Das ◽  
Willem-Jan Marijnissen ◽  
...  

BACKGROUND Patients who undergo primary Total Knee Replacement surgery (TKR) are often discharged within 1-3 days after surgery. With this relatively short length of hospital stay, a patient’s self-management is a crucial factor in optimizing the outcome of their treatment. In the case of TKR, self-management primarily involves adequate pain management, followed by physiotherapy exercises and daily self-care activities. Patients are educated on all these topics by hospital staff upon discharge from the hospital but often struggle to comprehend this information due to its quantity, complexity, and the passive mode of communication used to convey it. OBJECTIVE This study primarily aims to determine whether actively educating TKR patients with timely, day-to-day postoperative care information through an app could lead to a decrease in their level of pain compared to those who only receive standard information about their recovery through the app. In addition, physical functioning, quality of life, ability to perform physiotherapy exercises and daily self-care activities, satisfaction with information, perceived involvement by the hospital, and health care consumption were also assessed. METHODS A multicenter randomized controlled trial was performed in five Dutch hospitals. In total, 213 patients who had undergone elective, primary, unilateral TKR participated. All patients had access to an app for their smartphone and tablet to guide them after discharge. The intervention group could unlock day-to-day information by entering a personal code. The control group only received weekly, basic information. Primary (level of pain) and secondary outcomes (physical functioning, quality of life, ability to perform physiotherapy exercises and activities of daily self-care, satisfaction with information, perceived involvement by the hospital, and health care consumption) were measured using self-reported online questionnaires. All outcomes were measured weekly in the four weeks after discharge, except for physical functioning and quality of life, which were measured at baseline and at four weeks after discharge. Data was analyzed using Student <italic>t</italic> tests, chi-square tests, and linear mixed models for repeated measures. RESULTS In total, 114 patients were enrolled in the intervention group (IG) and 99 in the control group (CG). Four weeks after discharge, patients in the IG performed significantly better than patients in the CG on all dimensions of pain: pain at rest (mean 3.45 vs mean 4.59; <italic>P</italic>=.001), pain during activity (mean 3.99 vs mean 5.08; <italic>P</italic>&lt;.001) and pain at night (mean 4.18 vs mean 5.21; <italic>P</italic>=.003). Additionally, significant differences were demonstrated in favor of the intervention group for all secondary outcomes. CONCLUSIONS In the four weeks following TKR, the active and day-to-day education of patients via the app significantly decreased their level of pain and improved their physical functioning, quality of life, ability to perform physiotherapy exercises and activities of daily self-care, satisfaction with information, perceived involvement by the hospital, and health care consumption compared to standard patient education. Given the rising number of TKR patients and the increased emphasis on self-management, we suggest using an app with timely postoperative care education as a standard part of care. CLINICALTRIAL Netherlands Trial Register NTR7182; https://www.trialregister.nl/trial/6992


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