Item Understanding of Common Quality of Life Measures for use with Autistic Adults.

Quality of life (QOL) and life satisfaction are important research priorities for autistic adults. As such, we saw a need to evaluate individual items of commonly used subjective QOL scales to understand how they are interpreted and perceived by autistic adults. This study used cognitive interviews and repeated sampling to evaluate the accessibility, test-retest reliability and internal consistency of several common QOL measures in a sample of young autistic adults (n = 20; aged 19-32). Cognitive interviews suggested that the Satisfaction with Life Scale was well understood and demonstrated excellent internal consistency and test-retest reliability. While the WHOQoL-BREF and WHOQoL Disability Modules had adequate reliability, cognitive interviews suggested that additional instructions and examples would further enhance their accessibility for use with autistic adults.

The feasibility of an automatic prompting system in assisting people with traumatic brain injury in cooking tasks.

Purpose: Individuals with traumatic brain injury (TBI) often experience difficulties in performing kitchen-related sequencing tasks due to cognitive deficits. The primary aim of this study is to examine the feasibility of a context-aware automatic prompting system in assisting individuals with TBI in multi-step cooking tasks.Method: Sixteen individuals with TBI participated in the study. A randomized cross-over design was used to compare the automatic prompting method with a conventional user-controlled method through a tablet device. Participant performance under each prompting method was assessed using the Performance Assessment of Self-Care Skills in terms of independence, safety, and adequacy. Subjective workload and qualitative feedback were also collected.Results: The automatic method, when compared with the user-controlled method, significantly decreased the amount of external assistance required by participants, received higher ratings in user perceived ease-of-use, and was considered less stressful for participants. However, the user-controlled method showed strengths in offering participants more flexibility in terms of controlling on the timing of prompts.Conclusions: The results provided insight into the potential benefits and user perceptions of a context-aware prompting system. The information could contribute to the future development of advanced prompting technology for people with cognitive impairments in completing sequential tasks.Implications for RehabilitationFor people with traumatic brain injury, the context-aware prompting method showed advantages in improving user performance, receiving better ratings on ease-of-use, and decreasing stress levels, compared to the user-controlled prompting method in completing multi-step cooking tasks.Future prompting systems for people with cognitive impairments may allow users to control the pace of prompting and use sensing information as back-up assistance in critical situations. In this way, the system may help users monitor their actions and offer confirmations, especially at steps with safety concerns, thus enhancing the sense of security and reducing the stress from self-monitoring.

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.

Usability and reliability of a remotely administered adult autism assessment, the autism diagnostic observation schedule (ADOS) module 4.

INTRODUCTION: The Autism Diagnostic Observation Schedule (ADOS) Module 4 is an autism assessment designed for verbally fluent adolescents and adults. Because of a shortage of available clinical expertise, it can be difficult for adults to receive a proper autism spectrum disorder (ASD) diagnostic assessment. A potential option to address this shortage is remote assessment. The objective of this study was to examine the feasibility, usability, and reliability of administering the ADOS Module 4 remotely using the Versatile and Integrated System for Telerehabilitation (VISYTER). MATERIALS AND METHODS: VISYTER consists of computer stations at the client site and clinician site for video communication and a Web portal for managing and coordinating the assessment process. Twenty-three adults with an ASD diagnosis participated in a within-subject crossover design study in which both a remote ADOS and a face-to-face ADOS were administered. After completing the remote ADOS, participants completed a satisfaction survey. RESULTS: Participant satisfaction with the remote ADOS delivery system was high. The kappa value was greater than 0.61 on 21 of 31 ADOS items. There was substantial agreement on ADOS classification (i.e., diagnosis) between assessments delivered face-to-face versus assessments delivered remotely (interclass coefficient=0.92). Non-agreement may have been due to outside factors or practice effect despite a washout period. CONCLUSIONS: The results of this study demonstrate that an autism assessment designed to be delivered face to face can be administered remotely using an integrated Web-based system with high levels of usability and reliability.

An integrated telehealth system for remote administration of an adult autism assessment.

We developed a telehealth system to administer an autism assessment remotely. The remote assessment system integrates videoconferencing, stimuli presentation, recording, image and video presentation, and electronic assessment scoring into an intuitive software platform. This is an advancement over existing technologies used in telemental health, which currently require several devices. The number of children, adolescents, and adults with autism spectrum disorders (ASDs) has increased dramatically over the past 20 years and is expected to continue to increase in coming years. In general, there are not many clinicians trained in either the diagnosis or treatment of adults with ASD. Given the number of adults with autism in need, a remote assessment system can potentially provide a solution to the lack of trained clinicians. The goal is to make the remote assessment system as close to face-to-face assessment as possible, yet versatile enough to support deployment in underserved areas. The primary challenge to achieving this goal is that the assessment requires social interaction that appears natural and fluid, so the remote system needs to be able to support fluid natural interaction. For this study we developed components to support this type of interaction and integrated these components into a system capable of supporting the entire autistic assessment protocol. We then implemented the system and evaluated the system on real patients. The results suggest that we have achieved our goal in developing a system with high-quality interaction that is easy to use.

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.

VISYTER: versatile and integrated system for telerehabilitation.

The versatile and integrated system for telerehabilitation (VISYTER) is a software platform for developing various telerehabilitation applications. VISYTER has been designed to take into account the environments and requirements of rehabilitation services. The requirements considered in the platform design include minimal equipment beyond what is available in many rehabilitation settings, minimal maintenance, and ease of setup and operation. In addition, the platform has been designed to be able to adjust to different bandwidths, ranging from the very fast new generation of Internet to residential broadband connections. VISYTER is a secure integrated system that combines high-quality videoconferencing with access to electronic health records and other key tools in telerehabilitation such as stimuli presentation, remote multiple camera control, remote control of the display screen, and an eye contact teleprompter. The software platform is suitable for supporting low-volume services to homes, yet scalable to support high-volume enterprise-wide telehealth services. The VISYTER system has been used to develop a number of telerehabilitation applications, including a remote wheelchair prescription, adult autistic assessments, and international physical therapy teleconsultations. An evaluation of VISYTER for delivering a remote wheelchair prescription was conducted on 48 participants. Results of the evaluation indicate a high level of satisfaction from patients with the use of VISYTER. The versatility and cost-effectiveness of the platform has the potential for a wide range of telerehabilitation applications and potentially may lower the technical and economic barriers of telemedicine adoption.