Andrea D. Fairman

Rehabilitation and medical management of the adult with spina bifida

Dicianno BE, Kurowski BG, Yang JMJ, Chancellor MB, Bejjani GK, Fairman AD, Lewis N, Sotirake J: Rehabilitation and medical management of the adult with spina bifida. Am J Phys Med Rehabil 2008;87:1026–1050. 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.

Enhancing Quality of Life through Telerehabilitation

Telerehabilitation is an emerging method of delivering rehabilitation services that uses technology to serve clients, clinicians, and systems by minimizing the barriers of distance, time, and cost. The driving force for telerehabilitation has been as an alternative to face-to-face rehabilitation approaches to reduce costs, increase geographic accessibility, or act as a mechanism to extend limited resources. A rationale for telerehabilitation is the potential to enhance outcomes beyond what may result from face-to-face interventions by enabling naturalistic, in vivo interventions. There is considerable support for the value of interventions delivered in the natural environment, ranging from addressing efficacy concerns by addressing problems of generalization, to increasing patient participation, including environmental context in rehabilitation, and increasing patient satisfaction. Further clinical and research exploration should explore telerehabilitation as a tool for the delivery of rehabilitation services in vivo.

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.

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.

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

ObjectiveTo determine feasibility of using the interactive Mobile Health and Rehabilitation (iMHere) system in spina bifida and its effects on psychosocial and medical outcomes. DesignIn 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. ResultsFeasibility 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. ConclusionUse 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.

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.

Entry-Level OTR and COTA Intervention Utilization Derived from NBCOT Practice Analysis: Implications for Fieldwork Experiences

Effective fieldwork provides students with learning experiences in preparation for entry-level practice as occupational therapists (OT) or occupational therapy assistants (OTA). In 2003, the National Board for Certification in Occupational Therapy, Inc.® (NBCOT) conducted a practice analysis of entry-level certified occupational therapy practitioners (OTR & COTA) to validate a test blueprint for the national certification examinations. This study reports a novel, elective survey reflecting the total percentage of entry-level practitioners, who reported use of 88 different interventions. The purpose of this paper is to translate the practice analysis intervention data gathered in the optional survey to plan and implement effective fieldwork that prepares fieldwork students for entry-level practice. The results of this study will provide understanding of intervention use among entry-level practitioners (OTR = 479; COTA = 168) as a function of practice context. An initial correlation of a random sample of 100 OTRs and COTAs found group equivalency, meaning that the OTR information could be used for the major analyses and generalized to include COTA. Fourteen interventions were found commonly across all practice settings for OTR. These fourteen were factored into three areas or themes (preparatory and activities of daily living; motor skills, posture and coordination; and mental functions) with significant frequency of intervention utilization. Further analysis indicated a high variability of the top thirty interventions for each setting with regard to utilization of interventions above and below the 50 percentile. This snapshot of practice regarding entry-level intervention utilization in occupational therapy across seven major practice settings is described and application to fieldwork processes elaborated. The information provides a description of practice in each setting that can be used by academic fieldwork coordinators for student placement decisions. Fieldwork educators can use this information as a guide for planning comprehensive fieldwork-learning activities, as well as supervising students. Fieldwork students can use this intervention utilization information to assess their readiness for entry-level practice in each setting.

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.

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.

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.