Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO).

IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.

An interface to support independent use of Facebook by people with intellectual disability.

Use of social networking sites, such as Facebook, is rapidly expanding, but people with intellectual disability are at risk for exclusion because sites like Facebook are not designed for cognitive access. The purpose of the present study was to describe the development and initial testing of a cognitively accessible prototype interface for Facebook, called Endeavor Connect, that was designed to support independent Facebook use by people with intellectual disability. The performance of young adults with intellectual disability when completing five common Facebook tasks was compared when using the Endeavor Connect and Facebook interfaces. Results suggest that, when using Endeavor Connect, young adults with intellectual disability completed more tasks independently with fewer errors and required fewer prompts. Implications for research and practice are discussed.

Self-report computer-based survey of technology use by people with intellectual and developmental disabilities.

Advancements of technologies in the areas of mobility, hearing and vision, communication, and daily living for people with intellectual and developmental disabilities has the potential to greatly enhance independence and self-determination. Previous research, however, suggests that there is a technological divide with regard to the use of such technologies by people with intellectual and developmental disabilities when compared with the use reported by the general public. To provide current information with regard to technology use by people with intellectual and developmental disabilities by examining the technology needs, use, and barriers to such use experienced by 180 adults with intellectual and developmental disabilities, we used QuestNet, a self-directed computer survey program. Results suggest that although there has been progress in technology acquisition and use by people with intellectual and developmental disabilities, an underutilization of technologies across the population remains.

Emerging new practices in technology to support independent community access for people with intellectual and cognitive disabilities.

The concept of community access is a multidimensional term, which may involve issues related to physical access, knowledge and information, power and control, relationships and communications, advocacy, participation and quality of life [21]. This paper discusses historical and emerging practices and interventions related to physical access to community and community based information for individuals with cognitive disabilities such as intellectual disability, autism or traumatic brain injury. While much societal attention has been paid to features of independent community access for populations such as individuals with hearing, vision or physical disabilities, less attention has focused on independent community access for people with intellectual and other significant cognitive disabilities. Attitudes and actions by families and professional service communities are often mixed for some individuals in this population. The somewhat limited research base in these areas is explored, including a case study review and results from several promising feasibility studies. The paper concludes with comments concerning future prospects and recommendations for improving independent community access for persons with significant cognitive disabilities.

Evaluating a GPS-based transportation device to support independent bus travel by people with intellectual disability.

We examined the utility of a PDA-based software system with integrated GPS technology for providing location-aware visual and auditory prompts to enable people with intellectual disability to successfully navigate a downtown bus route. Participants using the system were significantly more successful at completing a bus route than were people in a control group, who used a map and verbal directions. Further, when using the GPS-based system, 73% of participants successfully rang the bell and exited the bus at the right stop compared with only 8% of the control group. This finding was observed for individuals attempting to follow a new bus route for the first time and get off the bus at a previously unknown location.

"Moby-dick is my favorite:" evaluating a cognitively accessible portable reading system for audiobooks for individuals with intellectual disability.

Significant barriers exist for individuals with intellectual disability to independently access print-based content. It is regrettable that, while the amount of content now available electronically increases, tools to access these materials have not been developed with individuals with intellectual disability in mind. This article reports the results of research evaluating the use of a palmtop PC-based application designed to enable individuals with intellectual disability to access electronic books and documents. Participants with intellectual disability were randomly assigned to 1 of 3 groups, each group differing in the type of audio player used. Participants who used the specially designed reader made significantly fewer errors accessing electronic books and required significantly fewer prompts than did participants using either of 2 mainstream audiobook readers.

Evaluation of an application for making palmtop computers accessible to individuals with intellectual disabilities.

BACKGROUND: Palmtop computers provide a promising mobile platform to address barriers to computer-based supports for people with intellectual disabilities. This study evaluated a specially designed interface to make navigation and features of palmtop computers more accessible to users with intellectual disabilities. METHOD: The specialised cognitively accessible interface was compared with a standard Windows CE interface. Participants completed a structured set of navigation/computer use tasks using both the experimental and control conditions. Measurements included the amount of assistance needed and errors made in completing the navigation/computer use tasks. RESULTS: Participants (N = 32) made significantly fewer errors (p<.001) and required significantly fewer prompts (p<.001) while using the specialised software interface compared to the mainstream Windows interface. CONCLUSIONS: The research demonstrates the feasibility of using special software design methods, such as linear program flows, error minimisation and the incorporation of repetition and consistency, to improve access to palmtop computers for individuals with intellectual disabilities. Issues related to designing cognitively accessible interfaces are discussed.

Enhancing independent time-management skills of individuals with mental retardation using a Palmtop personal computer.

Achieving greater independence for individuals with mental retardation depends upon the acquisition of several key skills, including time-management and scheduling skills. The ability to perform tasks according to a schedule is essential to domains like independent living and employment. The use of a portable schedule prompting system to increase independence and self-regulation in time-management for individuals with mental retardation was examined. Twelve people with mental retardation participated in a comparison of their use of the technology system to perform tasks on a schedule with use of a written schedule. Results demonstrated the utility of a Palmtop computer with schedule prompting software to increase independence in the performance of vocational and daily living tasks by individuals with mental retardation.