User Preferences for the Design of a Mobile Health System to Support Transition-Age Youth With Epilepsy.

BACKGROUND: Transition-age youth with epilepsy (TAYWE) experience poor self management and adverse health outcomes. The purpose of this study was to gain the perspectives of TAYWE, their caregivers, and clinicians to inform the design of a mobile health (mHealth) system to support the self-management needs of TAYWE. METHODS: Individual semi-structured interviews and focus groups were conducted with TAYWE, their caregivers, and clinicians who manage their care. RESULTS: Sixteen TAYWE and seven caregivers participated in focus group sessions, and four clinicians were interviewed. Participants expressed the need for an mHealth system that addressed privacy, supervision of caregiver involvement, a user-friendly system design, and motivation to sustain ongoing use. Three themes evolved: current mobile app use, mHealth systems features and functions, and implementation concerns. DISCUSSION: Data from this study informs the design of an mHealth system to support self-management in TAYWE and identifies important areas for practitioners to address when providing health care to TAYWE.

An Adaptive Mobile Health System to Support Self-Management for Persons With Chronic Conditions and Disabilities: Usability and Feasibility Studies.

BACKGROUND: Persons with chronic conditions and disabilities (PwCCDs) are vulnerable to secondary complications. Many of these secondary complications are preventable with proactive self-management and proper support. To enhance PwCCDs' self-management skills and conveniently receive desired support, we have developed a mobile health (mHealth) system called iMHere. In 2 previous clinical trials, iMHere was successfully used to improve health outcomes of adult participants with spina bifida and spinal cord injury. To further expand use of iMHere among people with various types of disabilities and chronic diseases, the system needs to be more adaptive to address 3 unique challenges: 1) PwCCDs have very diverse needs with regards to self-management support, 2) PwCCDs' self-management needs may change over time, and 3) it is a challenge to keep PwCCDs engaged and interested in long-term self-management. OBJECTIVE: The aim of this study was to develop an adaptive mHealth system capable of supporting long-term self-management and adapting to the various needs and conditions of PwCCDs. METHODS: A scalable and adaptive architecture was designed and implemented for the new version, iMHere 2.0. In this scalable architecture, a set of mobile app modules was created to provide various types of self-management support to PwCCDs with the ability to add more as needed. The adaptive architecture empowers PwCCDs with personally relevant app modules and allows clinicians to adapt these modules in response to PwCCDs' evolving needs and conditions over time. Persuasive technologies, social support, and personalization features were integrated into iMHere 2.0 to engage and motivate PwCCDs and support long-term usage. Two initial studies were performed to evaluate the usability and feasibility of the iMHere 2.0 system. RESULTS: The iMHere 2.0 system consists of cross-platform client and caregiver apps, a Web-based clinician portal, and a secure 2-way communication protocol for providing interactions among these 3 front-end components, all supported by a back-end server. The client and caregiver apps have 12 adaptive app modules to support various types of self-management tasks. The adaptive architecture makes it possible for PwCCDs to receive personalized app modules relevant to their conditions with or without support from various types of caregivers. The personalization and persuasive technologies in the architecture can be used to engage PwCCDs for long-term usage of the iMHere 2.0 system. Participants of the usability study were satisfied with the iMHere 2.0 client app. The feasibility evaluation revealed several practical issues to consider when implementing the system on a large scale. CONCLUSIONS: We developed an adaptive mHealth system as a novel method to support diverse needs in self-management for PwCCDs that can dynamically change over time. The usability of the client app is high, and it was feasible for PwCCDs to use in supporting personalized and evolving self-care needs.

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management.

BACKGROUND: Many adolescents and young adults with chronic illness or disability often fail to develop the self-management skills necessary to independently handle medical and self-management routines. In light of these needs, we are developing iMHere 2.0 (Interactive Mobile Health and Rehabilitation), a mobile health (mHealth) system to support a self-management program. OBJECTIVE: Our objective was to gather data from persons with brain and spinal cord anomalies (BSA) and their caregivers to better understand how mHealth would be most helpful in supporting them to proactively manage daily self-care routines and to access medical care as needed. The specific purpose was not only to gather feedback and to gain increased insight into the design of the new version of iMHere, but also to gather perspectives of new groups, namely adolescents as young as 12 years and their parents and/or caregivers. METHODS: Our project employed focus group sessions and surveys to collect data from participants with BSA, as well as their caregivers. A total of six focus group sessions were conducted on four separate occasions until the data gathered reached saturation. The objectives of our focus group sessions were to better understand ways to develop mHealth systems to support self-management, to promote independence, to motivate long-term system use, and to prevent medical problems that lead to hospitalizations and emergency room visits for youth and young adults with BSA. RESULTS: A total of 16 youth and young adults with BSA and 11 caregivers participated in the sessions. Within and among our groups, the following five overarching themes emerged from the data: (1) make it easy, (2) engage, (3) educate and prepare, (4) motivate and support, and (5) personalize. Participants shared their perspectives and detailed information about mHealth apps that would be important for independence in self-care and self-management. CONCLUSIONS: Our findings suggest that most individuals keep their mobile phones with them at all times and typically use a mobile phone for social media, music, photos, and texting. Our qualitative analysis indicates that youth and young adults with BSA, as well as their caregivers, acknowledge the importance of being actively engaged in developing and using mHealth apps that monitor and manage their health care needs. Information gleaned from these focus group sessions and surveys have provided data to refine the iMHere 2.0 mHealth prototype platform that we have developed.

Nonbiologic factors that impact management in women with urinary incontinence: review of the literature and findings from a National Institute of Diabetes and Digestive and Kidney Diseases workshop.

INTRODUCTION AND HYPOTHESIS: Urinary incontinence (UI)-defined as a complaint of involuntary loss of urine-is common in women, with major public health, financial, and quality of life (QoL) implications. Despite the high toll of UI and the availability of effective conservative treatments, many women with UI do not seek care. Those who do often continue to experience symptoms. Improving UI treatment may require a comprehensive approach to urology research, including a broad set of potentially influential factors beyond biologic. METHODS: To explore the effects of nonbiologic factors (NBF) on UI management and treatment response, the National Institute of Diabetes and Digestive and Kidney Diseases convened a workshop for clinical and psychosocial researchers. Participants proposed a UI treatment pathway: recognizing the problem, willingness to seek treatment, access to care, receiving quality treatment, engaging in self-management, and adhering to chosen treatments; discussed potential NBFs that may affect the pathway; and identified areas for future research. After the meeting, a rapid literature review was conducted to assess the current state of research on NBFs in women with UI. RESULTS: Participants identified several patient-level NBFs that may influence the UI management pathway, including QoL and perceived bother; stigma, shame, and embarrassment; knowledge and perceptions; social determinants of health; cultural and language characteristics; personal characteristics and skills; and physical abilities. Additionally, participants acknowledged that provider- and system-level factors also play a role and likely interact with patient-level factors. CONCLUSIONS: NBFs that potentially affect the UI management pathway are not well understood, and a comprehensive, interdisciplinary approach to research is needed to understand and appropriately support effective UI treatment.

Validation of the Standardized Touchscreen Assessment of Cognition with neurotypical adults.

BACKGROUND: Portable electronic devices are increasingly being used for clinical assessment of individuals with cognitive deficits. Prior to implementation of tablet-based assessments, comparison with other standard measures is needed. OBJECTIVE: The study purpose was to compare an iPad administered cognitive assessment known as the Standardized Touchscreen Assessment of Cognition (STAC) to the Cognitive Linguistic Quick Test (CLQT) and the Cognitive Assessment of Minnesota (CAM). METHODS: Eighty-eight neurotypical participants completed the STAC, CAM, and CLQT in a randomized order. The researchers compared the participants' responses across similar subtests. Performance across iPad comfort levels was also explored. RESULTS: Findings revealed moderate correlations in some areas of assessment: generative naming and immediate visual memory. The correlations varied across age groups within each area of assessment with no consistent pattern. Additionally, people with comfort using an iPad performed significantly better on three areas of STAC assessment (generative naming category and first letter, and auditory working memory) compared to people who reported no iPad comfort. CONCLUSIONS: Initial testing of the STAC in a neurotypical population identified moderate correlations with standard measures in some subtests; however, additional testing of the STAC is needed to determine the clinical utility and validity of assessing populations with cognitive impairments.

Iterative Design and Usability Testing of the Imhere System for Managing Chronic Conditions and Disability.

A novel mobile health platform, Interactive Mobile Health and Rehabilitation (iMHere), is being developed to support wellness and self-management among people with chronic disabilities. The iMHere system currently includes a smartphone app with six modules for use by persons with disabilities and a web portal for use by medical and rehabilitation professionals or other support personnel. Our initial clinical research applying use of this system provides insight into the feasibility of employing iMHere in the development of self-management skills in young adults (ages 18-40 years) with spina bifida (SB) (Dicianno, Fairman, et al., 2015). This article describes the iterative design of the iMHere system including usability testing of both the app modules and clinician portal. Our pilot population of persons with SB fostered the creation of a system appropriate for people with a wide variety of functional abilities and needs. As a result, the system is appropriate for use by persons with various disabilities and chronic conditions, not only SB. In addition, the diversity of professionals and support personnel involved in the care of persons with SB also enabled the design and implementation of the iMHere system to meet the needs of an interdisciplinary team of providers who treat various conditions. The iMHere system has the potential to foster communication and collaboration among members of an interdisciplinary healthcare team, including individuals with chronic conditions and disabilities, for a client-centered approach to support self-management skills.

Feasibility of Using Mobile Health to Promote Self-Management in Spina Bifida.

OBJECTIVE: To determine feasibility of using the interactive Mobile Health and Rehabilitation (iMHere) system in spina bifida and its effects on psychosocial and medical outcomes. DESIGN: In a randomized controlled trial, 13 intervention participants using the iMHere system and receiving usual care and 10 control participants receiving usual care were followed for 1 year. RESULTS: Feasibility of use of the system was demonstrated by participants using a customized smartphone system for reminders to conduct various self-care tasks, upload photos of wounds, manage medications, complete mood surveys, and for secure messaging. High usage of the system was associated with positive changes in the subscales of the Adolescent Self-Management and Independence Scale II. CONCLUSION: Use of the iMHere system in spina bifida is feasible and was associated with short-term self-reported improvements in self-management skill. This system holds promise for use in many diverse chronic care models to support and increase self-management skills.

Development of mHealth system for supporting self-management and remote consultation of skincare.

BACKGROUND: Individuals with spina bifida (SB) are vulnerable to chronic skin complications such as wounds on the buttocks and lower extremities. Most of these complications can be prevented with adherence to self-care routines. We have developed a mobile health (mHealth) system for supporting self-care and management of skin problems called SkinCare as part of an mHealth suite called iMHere (interactive Mobile Health and Rehabilitation). The objective of this research is to develop an innovative mHealth system to support self-skincare tasks, skin condition monitoring, adherence to self-care regimens, skincare consultation, and secure two-way communications between patients and clinicians. METHODS: In order to support self-skincare tasks, the SkinCare app requires three main functions: (1) self-care task schedule and reminders, (2) skin condition monitoring and communications that include imaging, information about the skin problem, and consultation with clinician, and (3) secure two-way messaging between the patient and clinician (wellness coordinator). The SkinCare system we have developed consists of the SkinCare app, a clinician portal, and a two-way communication protocol connecting the two. The SkinCare system is one component of a more comprehensive system to support a wellness program for individuals with SB. RESULTS: The SkinCare app has several features that include reminders to perform daily skin checks as well as the ability to report skin breakdown and injury, which uses a combination of skin images and descriptions. The SkinCare app provides reminders to visually inspect one's skin as a preventative measure, often termed a "skin check." The data is sent to the portal where clinicians can monitor patients' conditions. Using the two-way communication, clinicians can receive pictures of the skin conditions, track progress in healing over time, and provide instructions for how to best care for the wound. CONCLUSIONS: The system was capable of supporting self-care and adherence to regimen, monitoring adherence, and supporting clinician engagement with patients, as well as testing its feasibility in a long-term implementation. The study shows the feasibility of a long-term implementation of skincare mHealth systems to support self-care and two-way interactions between patients and clinicians.

Perspectives on the evolution of mobile (mHealth) technologies and application to rehabilitation.

Individuals with chronic conditions and disabilities who are vulnerable to secondary complications often require complex habilitative and rehabilitative services to prevent and treat these complications. This perspective article reviews the evolution of mHealth technologies and presents insights as to how this evolution informed our development of a novel mHealth system, iMHere (interactive mobile health and rehabilitation), and other technologies, including those used by the Veterans Administration. This article will explain the novel applications of mHealth for rehabilitation and specifically physical therapy. Perspectives on the roles of rehabilitation professionals in the delivery of health care using mHealth systems are included. Challenges to mHealth, including regulatory and funding issues, are discussed. This article also describes how mHealth can be used to improve patient satisfaction and delivery of care and to promote health and wellness.

Outcomes of Clinicians, Caregivers, Family Members and Adults with Spina Bifida Regarding Receptivity to use of the iMHere mHealth Solution to Promote Wellness.

The purpose of this study was to gather information regarding the receptivity of clinicians, caregivers and family members, and adults with spina bifida (SB) to the use of a mHealth application, iMobile Health and Rehabilitation (iMHere) system. Surveys were administered to end user groups in conjunction with a conference presentation at the Spina Bifida Association's 38th Annual Conference. The survey results were obtained from a total of 107 respondents. Likert scale and qualitative results are provided in consideration of future application of the iMHere system in clinical practice. The results of this survey indicate respondents were receptive and supportive with regard to adopting such a system for personal and professional use. Challenges likely to be encountered in the introduction of the iMHere system are also revealed and discussed.

Effectiveness of an upper extremity exercise device and text message reminders to exercise in adults with spina bifida: a pilot study.

Obesity, deconditioning, cognitive impairment, and poor exercise tolerance are health issues concerning adults with spina bifida (SB). Our aim is to describe exercise participation and identify motivating tactics and exercise devices that increase participation. In a quasi-experimental randomized crossover design, the GameCycle was compared to a Saratoga Silver I arm ergometer. Personalized free or low-cost text/voice message reminders to exercise were sent. Nineteen young adults with SB were assigned to either the GameCycle or Saratoga exercise group. Within each group, participants were randomized to receive reminders to exercise, or no reminders, then crossed over to the opposite message group after eight weeks. Before and after a 16-week exercise program anthropometric, metabolic, exercise testing and questionnaire data, and recorded participation were collected. Miles traveled by the GameCycle group were significantly higher than the Saratoga exercise groups. No significant differences were found in participation between the message reminder groups. Low participation rates were seen overall. Those using the GameCycle traveled more miles. Barriers to exercise participation may have superseded ability to motivate adults with SB to exercise even with electronic reminders. Support from therapists to combat deconditioning and develop coping skills may be needed.

iMHere: A Novel mHealth System for Supporting Self-Care in Management of Complex and Chronic Conditions.

BACKGROUND: Individuals with chronic conditions are vulnerable to secondary complications that can be prevented with adherence to self-care routines. They benefit most from receiving effective treatments beyond acute care, usually in the form of regular follow-up and self-care support in their living environments. One such population is individuals with spina bifida (SB), the most common permanently disabling birth defect in the United States. A Wellness Program at the University of Pittsburgh in which wellness coordinators supervise the care of individuals with chronic disease has produced remarkably improved outcomes. However, time constraints and travel costs have limited its scale. Mobile telehealth service delivery is a potential solution for improving access to care for a larger population. OBJECTIVE: The project's goal was to develop and implement a novel mHealth system to support complex self-care tasks, continuous adherence to regimens, monitoring of adherence, and secure two-way communications between patients and clinicians. METHODS: We developed and implemented a novel architecture of mHealth system called iMHere (iMobile Health and Rehabilitation) consisting of smartphone apps, a clinician portal, and a two-way communication protocol connecting the two. The process of implementing iMHere consisted of: (1) requirement analysis to identify clinically important functions that need to be supported, (2) design and development of the apps and the clinician portal, (3) development of efficient real-time bi-directional data exchange between the apps and the clinician portal, (4) usability studies on patients, and (5) implementation of the mHealth system in a clinical service delivery. RESULTS: There were 9 app features identified as relevant, and 5 apps were considered priority. There were 5 app features designed and developed to address the following issues: medication, skin care, bladder self-catheterization, bowel management, and mental health. The apps were designed to support a patient's self-care tasks, send adherence data to the clinician portal, and receive personalized regimens from the portal. The Web-based portal was designed for clinicians to monitor patients' conditions and to support self-care regimens. The two-way communication protocol was developed to facilitate secure and efficient data exchange between the apps and the portal. The 3 phases of usability study discovered usability issues in the areas of self-care workflow, navigation and interface, and communications between the apps and the portal. The system was used by 14 patients in the first 6 months of the clinical implementation, with 1 drop out due to having a poor wireless connection. The apps have been highly utilized consistently by patients, even those addressing complex issues such as medication and skincare. The patterns of utilization showed an increase in use in the first month, followed by a plateau. CONCLUSIONS: The system was capable of supporting self-care and adherence to regimen, monitoring adherence, supporting clinician engagement with patients, and has been highly utilized.

The Life Course Model Web site: an online transition-focused resource for the spina bifida community.

The transition of youth with spina bifida into adulthood is an exciting opportunity to branch out, explore and participate in community, and reach higher levels of independence. The Life Course Model Web site is a resource designed to help in this process. This article describes how this tool can help individuals with spina bifida, parents, teachers, and caregivers evaluate this process and provide assistance where necessary.

Using the spina bifida life course model in clinical practice: an interdisciplinary approach.

The Life Course Model for patients, families, caregivers, teachers, and clinicians was developed with support by the National Spina Bifida Program, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for individuals with spina bifida. The Life Course Model facilitates a developmental approach to assessment and intervention along life's trajectory. This Life Course Model provides information about key developmental milestones for particular age groups, validated assessments that can be performed by clinicians or teachers to determine if milestones have been reached, useful suggestions for intervening in creative ways at each step, and evidence-based references. In this article, the authors introduce the viewpoints of several key clinicians who are involved in the care of individuals with spina bifida and how the Life Course Model can assist them, their patients, and their families in the process of assessment, intervention, collaboration with other clinicians, and follow-up. A case study is used to demonstrate the experience of comprehensive and collaborative management in transitioning a child and his family from infancy to adulthood.

Implementing a specialty electronic medical record to document a life-course developmental model and facilitate clinical interventions in spina bifida clinics.

This article describes the utility of a spina bifida-specific electronic medical record (SB EMR). Standardization and pooling of data through the SB EMR will facilitate development of increased knowledge for advancing interventions for SB treatment, rehabilitation, and support. Integration with a Web-based transition tool will enhance the efficiency and efficacy of interventions delivered by clinicians. The SB EMR may also be used by SB clinic staff to manage and monitor the developmental course SB through childhood and the adolescent years. Further, implementation of the SB EMR in conjunction with the life-course model will assist in the transition of young persons with SB to adult roles.

Rehabilitation and medical management of the adult with spina bifida.

.As the life expectancy of individuals with spina bifida increases, a lifelong need for management of many health issues in a rehabilitation setting has emerged in recent years. Physiatrists, in consultation with a variety of adult specialists, are particularly well suited to manage the common musculoskeletal, skin, bowel, bladder, renal, neurological, and other issues that arise in the adult population. This article reviews the last 20 yrs of literature pertinent to the rehabilitative care of this population, summarizes current evidence-based practice, and identifies key areas in which scientific evidence is lacking and future research is needed.