R3 Projects

R3 Telerehabilitation Enhanced Wellness Program in Spina Bifida

Task Leader:

Brad E. Dicianno, MD

Co-Investigator:

Andrea D. Fairman, PhD, MOT,OTR/L, CPRP

 

Project Overview:

Spina Bifida (SB) is the most common permanently disabling birth defect (SBAA, 2010) and presents significant challenges for providing routine medical care. A recent retrospective review of records of hospitalizations for adults with spina bifida or associated spinal cord anomalies in the US from 2004-2005 was conducted by Dicianno and Wilson (in press). Findings of this review revealed: “The most common primary diagnosis for hospitalization was urinary tract infection, followed by complications from devices/grafts/implants and skin wounds.” The majority of deaths were related to sepsis which may be attributed to either or both of these secondary complications. It can also be concluded: “Reducing the number of secondary medical conditions with proactive and preventative approaches to health care could reduce the morbidity, mortality, and cost for healthcare for this group” (Dicianno & Wilson).

 

Project Objective(s):

The goal of this project is to evaluate a mHealth system called iMHere  to improve health and wellness, and reduce time and cost of providing services.  The IMHere system consists of a secure clinician portal system which interacts with a series of applications (“apps”) to be utilized by individuals with spina bifida to maintain self-care routines.  While adults with spina bifida were identified as our target population for this pilot study, the system that has been develop can be easily modified to meet the needs of many other persons chronic conditions, complex medical needs and cognitive disabilities.

Method(s):

The R3 project  is a randomized control trial (RCT) which utilizes a staggered enrollment strategy and repeated measures design..  A total of 27 subjects were enrolled in the study and 23 remain engaged in the year-long clinical trial.  The study  compares the intervention group (TR Enhanced Wellness Program, n =13) to a control group (typical care, n=10) on various outcomes measures including community functional ability, self-management, locus of control, performance of self-care tasks, occurrences of secondary complications and various measures of health care utilization to demonstrate cost effectiveness.

Expected Findings and Deliverables:

The use of wireless technology will support persons with spina bifida “in vivo,” where they live, work & play. Using smartphones, including specially designed applications, we can provide assistance to persons with spina bifida (SB) and other disabilities with cognitive deficits that allows for improved self-management of health routines and conditions. The smartphone will essentially serve as a cognitive orthoses, life coach and case manager for individual. The system will also be designed to allow clinicians or caregivers to monitor and easily identify or “triage” persons in need of assistance to receive attention quickly, yet also allow for autonomy, freedom and a high level of independence.

 

Outcomes Measures will include:


Project Highlights

In January 2010, we received notice of an additional award of $8500 from the Verizon Foundation to utilize for the purchase of smartphone and data package plans. One of the Verizon Foundation’s core initiatives is Healthcare & Accessibility:
http://foundation.verizon.com/core/health.shtml

References:

SBAA, http://www.sbaa.org, accessed January 29, 2010

Dicianno BE &Wilson .(in press). Hospitalizations of Adults with Spina Bifida and Congenital Spinal Cord Anomalies, Archives of Physical Medicine and Rehabilitation.

 


Project Update

 


2014

TeleWellness: Interactive Mobile Health and Rehabilitation

http://youtu.be/WKXtOngBmVw


2013


2012

Six specialized smartphone applications, "apps," were developed and tested with subjects during Phase I of the project. These six apps include: 1. MyMeds (Medication Management), 2. TeleCath (Self Catheterization & monitoring of infections), 3) BMQ's (Bowel Management with focus to maintain continence), 4. SkinCheck (To prevent and closely track wounds, pressure ulcers), 5. Mood (identify and track level of depression) & 6. Nutrition (to monitor & coach regarding food and fluid intake). Phase I focused on usability testing procedures designed to identify the situations of usage; the necessary functions to support the self-management activities, operability, ease of understanding, giving effective feedback to keep on motivating the users, and unobtrusiveness in daily life. In order to achieve this, usability testing included the following aspects considering accessibility with regard to physical dexterity, perception and cognition. Following intensive usability testing, we determined the last app, for Nutrition, required considerable revisions. As a result, we decided to move forward with only the first 5 apps listed above for the clinical phase of the study.
In addition, these apps are part of a system to support delivery of interventions and incoming data input via these apps, called iMHere. This mobile clinical IT solution enables clinicians to monitor and communicate with patients in real-time, and track the patients’ self-care activities. An initial version of this telemedicine portal has been completed during Phase I of the project as well. Investigators are working toward commercialization of this system. We intend to further develop this portal system to generalize to other clinical settings, various work flow models, and related populations (i.e. Spinal cord injury, Traumatic Brain Injury, Multiple Sclerosis, Autism). An SBIR proposal has been submitted to the CDC and has entered the review process. We expect to know the results of the review by the end of June 2012.
Recruitment for the clinical phase of the project (Phase II) began in December 2011. We have enrolled 27 subjects in Phase II of the project to date and these subjects have received devices with the five specialized apps. These subjects reside within approximately 100 mile radius of Pittsburgh, Pennsylvania, and include persons who live in the states of Ohio and West Virginia. The UPMC Adult Spina Clinic, which serves this patient population, is one of only five clinics in the United States which specializes in the care of adults with spina bifida. The subjects in the TR (intervention group) have received smartphone devices and are learning to utilize the apps to manage self-care routines and report problems they encounter in daily life. We have already has success in helping a subject identify a skin condition and seek treatment and link subjects with community based mental health and vocational rehabilitation services from information gathered at baseline and entered into the apps. Baseline data has been collected on the currently enrolled subjects and has been completed for 25 of these individuals to date.

 


2011

The system to support delivery of interventions and incoming feedback from specialized smartphone applications is in development. Usability testing procedures have been designed to make the following compatible by taking the situations of use into account; the necessary functions to support the self-management activities, operability, ease of understanding, giving effective feedback to keep on motivating the users, and unobtrusiveness in daily life. In order to achieve this, the project focuses on the following aspects considering accessibility with regard to physical dexterity, perception and cognition. Usability testing has begun and three subjects have consented and been enrolled in this phase of the project. These three subjects are trialing the first three apps under development for assistance in managing their medications, bowel program and self-catheterization routines.

 


2010

The system to support delivery of interventions and incoming feedback from specialized smartphone applications is in development. Usability testing procedures have been designed to make the following compatible by taking the situations of use into account; the necessary functions to support the self-management activities, operability, ease of understanding, giving effective feedback to keep on motivating the users, and unobtrusiveness in daily life. In order to achieve this, the project focuses on the following aspects considering accessibility with regard to physical dexterity, perception and cognition.
In January 2010, we received notice of an additional award of $8500 from the Verizon Foundation to utilize for the purchase of smartphone and data package plans. One of the Verizon Foundation’s core initiatives is Healthcare & Accessibility:
http://foundation.verizon.com/core/health.shtml

 


References / Publications

SBAA, http://www.sbaa.org, accessed January 29, 2010
Parmanto, B, Pramana, IW, Yu, DX, Fairman, AD, Dicianno, BE & McCue, MP (in press). Development of iMHere: A Novel mHealth for Enhanced Wellness. Journal of Medical Internet Research (JMIR) mHealth and uHealth (mobile and ubiquitous health).
Dicianno BE, Peele P, Lovelace J, Fairman AD, Smyers D, Halgas M, Burkholder K, & Boninger ML (in press).  Specialty medical homes and wellness services in congenital and acquired spinal cord injury.  American Medical Group Association Compendium of Chronic Care Practices

Fairman, AD, Dicianno, BE, Datt, N, Garver, A, Parmanto, B & McCue, MP (2013) Survey outcomes of clinicians, family members and adults with spina bifida regarding use of mHealth applications to promote self-management. International Journal of Telerehabilitation. 
Article avaiable at: http://telerehab.pitt.edu/ojs/index.php/Telerehab/article/view/6116
Dicianno BE & Wilson, R. (2010). Hospitalizations of Adults with Spina Bifida and Congenital Spinal Cord Anomalies, Archives of Physical Medicine and Rehabilitation. 91(4) 529-535


News:


04/09/13
RERC on Telerehabilitation
State of the Science
Registration is Open
(details)


8|3|2012
2012 ISAAC RESEARCH SYMPOSIUM: Strand 3
AAC Meets Telerehabilitation: Envisioning Transformative Tele-AAC Research
(details)


4|18|2012
Jamie Schutte
Wins American Rehabilitation Counseling Association (ARCA) Doctoral Student of the Year
(details)


3|8|2012
iTunes U:
Series of videos on alternative computer access technology which have been posted on iTunes U
(details)


Facebook   Twitter   LinkedIn   You Tube