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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:

  1. 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.

  2. 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.

  3. 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

The primary purpose of the Pilot Project Core (PPC) is to provide junior and/or experienced nurse scientists, new to the area of symptom self management, with funds to establish their programs of interdisciplinary research in fatigue and pain self management interventions. In addition to supporting junior researchers, the PPC will also support established researchers who wish to expand their current research focus to test new ideas related to symptom self-management science. The specific aims of the PPC are to:

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.

Mentoring

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

PI: JULIE BARROSO, PHD, ANP, RN, FAAN

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

PI: SHANNON HUDSON, PHD, RN

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.

+ 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.


Name Rank/Title Area of Expertise
Teresa Kelechi Professor, PhD, RN, FAAN, Clare Endowed Chair Self management, pain
Ron Acierno Professor, PhD, Associate Dean for Research CON ADR, Technology
Gail Stuart Professor, PhD, RN, FAAN, Dean CON Dean
Carlos Lopez CON / Business Manager Business Management
Frank Treiber Professor, PhD, Director TACHL CTSA Core and Endowed Chair Technology Application
Leslie Lenert Professor, Director BMIC CTSA Core and Chief Research Information Officer, Endowed Chair of Biomedical Informatics, Biomedical Informatics
Carolyn Jenkins Professor, PhD, Director CTSA CHHP Core Community Engaged Research
Barbara Edlund Professor, PhD, RN, Senior Mentoring Champion Senior Mentorship & Publishing
Jane Zapka Professor, ScD, Methodologist, Department of Public Health Science NIH Review, RCT Methodology

+ 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).


Name Rank/Dept./College; Other Apt Area of Expertise
Ron Acierno Associate Dean for Research, MUSC CON; Senior Research Scientist, VAMC Technology enhanced intervention, RCT Design
Martha Sylvia, PhD Associate Professor Biomedical Informatics
Gigi Smith Associate Dean for Academics, MUSC CON Educational specialist
Suparna Qanungo Assistant Professor, MUSC College of Nursing Translational scientist
Kenneth Ruggiero Professor, Co-Director, TACHL, Associate Director, RHJ VA Center of Innovation Technology-based interventions
Gayenell Magwood Associate Professor, Chair CON Health Disparities, Qualitative Methods
Elaine Amella Professor, Director CON PhD Program Self management expert
Wendy Muzzy Associate Professor Grants/regulatory specialist
Susan Newman Professor, ScD, Methodologist, Department of Public Health Science Grants/regulatory specialist
Marilyn Laken Professor Health services research

+ 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.


Name Rank/Dept./College; Other Apt Area of Expertise
Marvella Ford Associate Director, Cancer Disparities Professor, Dept. Public Health Health Disparities Research (inside MUSC, not CON)
Sandra Dunbar Charles Howard Candler Professor of Cardiovascular Nursing and Associate Dean for Academic Advancement, Nell Hodgson Woodruff, School of Nursing, Emory University Senior nurse scientist: self management (outside MUSC)
Shirley Moore Edward J. and Louise Mellen Professor of Nursing and Associate Dean for Research, Francis Payne Bolton School of Nursing, Case Western Reserve University Senior nurse scientist: self management (outside MUSC)
Pat Coyne Director, Pain and Palliative Care Center, MUSC Hospital Authority Nursing expert pain and fatigue (MUSC, not CON)
Michael de Arellano Associate Dean for Diversity, College of Medicine, MUSC Ethnicity and diversity expert (MUSC, not CON)




 

SSMC Administration

Director:
Teresa Kelechi, PhD

 

Core Leads:
Pilot Projects Core Director: Ron Acierno, PhD

Technology Applications: Frank Treiber, PhD

Biomedical Informatics: Leslie Lennert, MD

Community Engaged Research: Carolyn Jenkins, PhD

 

Administrative Leads:
Wendy Muzzy, MRA, MLIS
Carlos Lopez, MHA
Mohan Madisetti, MS