Symptom Self Management Center
An NINR-P20 Center Grant
The overall goal of the Symptoms Self Management Center is to build a critical mass of research thematically focused on targeting symptoms of fatigue and pain through complementary, synergistic research activities.
Toward this end, the National Institute on Nursing Research-funded (NINR-P20) Symptom Self Management Center (SSMC) at the College of Nursing, Medical University of South Carolina, provides the infrastructure and
context for nurse scientists who will:
IDENTIFY groups of patients, who are at risk for chronic disease symptom exacerbation in the areas of fatigue and pain through cutting edge biomedical informatics
DEVELOP effective, scalable and sustainable technology enhanced self management interventions that are accessible to these patients through iterative, patient-centered design approaches; and
EVALUATE these in real world community settings through established community partnerships interventions.
In other words, the SSMC will deliver novel self management interventions where they are needed, to whom they are needed, when they are needed.
Thus, the SSMC Specific Goals are:
- Strengthen the infrastructure within which emerging investigators in self management interventions can collaborate with biomedical informaticists to use predictive analytic strategies to identify patients suffering from symptoms of fatigue and pain, across a variety of disorders in the early stages of symptom development.
- Provide instrumental support for junior and experienced investigators to collaborate with ehealth, mhealth, and web health design experts from the MUSC Technology Applications for Health Lifestyles (TACHL) health-technology center to iteratively design patient centered, technology enhanced self and self/family management interventions.
- Build upon the existing community based infrastructure that facilitates enhanced access to and relationships with community partners to develop ecologically valid, natural community laboratories that would otherwise not be feasible to create in the short time frame of pilot projects.
+ Pilot Project Core
AIM 1. Mentor potential pilot investigators to develop research proposals that include priority patient centered, technology enhanced self or family management interventions, that are theoretically sound and interdisciplinary in approach to improve symptoms of pain and fatigue related to chronic diseases.
Aim 2. Establish a rigorous review and approval process of proposals submitted for pilot funding. Proposal review will be conducted by the the Executive Committee (EC) (see ADMIN Core) composed of CON and MUSC interdisciplinary researchers and external ad hoc EC members retained for the purpose of pilot project review.
AIM 3. Oversee and support pilot investigators' efforts to obtain regulatory approvals, including institutional review board approval of human subjects' research prior to awarding of pilot funds.
AIM 4. Monitor progress of SSMC pilot investigators in meeting specific aims identified in pilot studies as well as in using pilot study findings to build future research studies and acquire major funding.
Impact: The Symptom Self Management Center (SSMC) will provide infrastructure to: expand the number and quality of research projects aimed at improving self-management of fatigue and pain symptoms in persons of all ages with chronic disorders; enhance the self-management skills of families/caregivers for function-impairing symptoms (pain and fatigue) of their family members; and, expand the number and quality of research projects aimed at improving health and quality of life in chronically ill persons.
The Medical University of South Carolina College of Nursing provides an inclusive and welcoming community for all faculty and students through active mentorship within a high caliber career development model. The priorities of this model include creating an enriched academic experience, maintaining regular contact, being a point-of-reference for resources, and providing a support network during academic, social and personal development. The Symptom Self Management Center supports this career development model with well aligned mentors who individualize a career development plan that promotes research rigor based in team science (bioinformatics, technology and/or community engagement). The goal is to promote a successful research trajectory to further develop or refine their skills to become well funded nurse scientists.
+ Pilot Projects
+ PILOT PROJECT #1 - FEASIBILITY AND ACCEPTABILITY OF AN MHEALTH COGNITIVE BEHAVIORAL STRESS MANAGEMENT INTERVENTION TO AMELIORATE HIV-RELATED FATIGUE
This pilot study will develop a fatigue symptom self-management CBSM program that will be delivered via mHealth through smartphones and tablets (optimized for each). All CBSM content will be integrated into the application, but tailoring of information delivery will be derived through algorithm-driven feedback based on user input as they respond to integrated assessment and symptom monitoring questions. As a result, users of the CBSM-Self Management Intervention (CBSM-SMI) will receive personalized, relevant intervention content, when they need it, where they need it. This novel mode of CBSM delivery has not yet been provided via an mHealth format to HIV-infected individuals, despite its obvious advantages of cost and reach. The Symptoms Self Management Center (SSMC) mentoring team and the TACHL technology subcore have extensive experience adapting and evaluating evidence-based CBT to mHealth platforms.
+ PILOT PROJECT #2 - A FAMILY-CENTERED SELF-MANAGEMENT PROGRAM FOR CHILDREN WITH SICKLE CELL DISEASE
This pilot study will use a technology-based intervention that has been tailored to meet child/adolescent/caregiver-reported needs to increase engagement and reach of self-management strategies. Our technology-based intervention (self-management for families and youth: SELFY) consists of three components: previously tested electronic educational materials on the SCD process and management; a publicly available, web-based, mHealth application for SCD pain monitoring and tracking; and a previously-tested model of patient-provider communication delivered via mHealth SMS communications and videoconferencing with a nurse with expertise in SCD. Innovative delivery of coaching and support provided by the nurse through text messaging and videoconferencing is also expected to increase self-management behaviors and lead to improved health outcomes. By delivering text messages, information can be personalized to aid in learning about pain, symptom management, and preventive care.
+ PILOT PROJECT #3 - ACTIVE AGAINST PAIN (AAP): A NURSE DELIVERED HYBRID TELEHEALTH/mHealth AGING IN PLACE INTERVENTION TO ADDRESS PAIN AND FATIGUE IN LOW-INCOME OLDER ADULTS
The overall goal of this feasibility study is to test an individualized, nurse led behavioral health program that leverages technology to directly teach older adults residing in a low income, independent living facility to reduce their pain and fatigue by improving mobility through strength and balance training. Specifically, nurses will use telehealth technology delivered directly into participant's homes to teach older adult residents best practice techniques to self-manage pain and fatigue, through mobility training designed to enhance competence, self-efficacy, and maximize social support. Moreover, best practice interventions will be enhanced by integrating physical activity data tracking to complement self-report measures which will be available in real time for patient and provider review, with parameter violations (eg, non-activity during scheduled activity time) triggering brief telehealth sessions to address any problems. Finally, participant qualitative feedback will be captured through voice/video recorded diaries focusing on experienced pain, fatigue, sleep, personal reactions to the project and physical activity as well as technology issues they may encounter.
+ Executive Internal & External Advisory Committees
+ Executive Committee
The Executive Committee is be chaired by Dr. Kelechi or, in her absence, Dr. Acierno. The EC is the Leadership Team, and will be responsible for assisting the P20 Center Director in allocating resources, identifying and selecting key personnel, planning and implementing key Center activities such as review and selection of pilot projects (with 2 ad hoc members Dunbar and Moore for this purpose), and assisting in mentorship activities.
+ Internal Advisory Committee
Reflecting the wide diversity and interdisciplinary research and cross-college collaboration potential of the CON, the members of the IAC include CON faculty and select COM faculty who are basic and clinical scientists, program directors, biomedical informaticists, and members of the IRB. They also represent the major academic units that will contribute to the Center. The IAC will meet semi-annually (note one of these 2 annual meetings will correspond to the EAC meeting).
+ External Advisory Committee
The EAC will meet annually and will add depth and perspective to the SSMC and will be composed of 5 senior researchers, at least 3 of whom will be nurse scientists, and at least 2 of whom will not hold MUSC appointments, and all of whom have expertise in one or more of the SSMC foci, including technology-enhanced self management intervention design, biomedical informatics, or community engaged research.
Teresa Kelechi, PhD
Pilot Projects Core Director: Ron Acierno, PhD
Technology Applications: Frank Treiber, PhD
Biomedical Informatics: Leslie Lennert, MD
Community Engaged Research: Carolyn Jenkins, PhD