1. Understanding the Relationship Between Self-Efficacy, Locus of Control, and Self-Management Behaviors in Adult Patients with Ehlers-Danlos Syndrome Sabrina M. Neeley, PhD, MPH Assistant Professor Dept. of Community Health

2. Objectives By the end of this session, the learner will be able to: Explain the meaning of self-management as it relates to chronic health conditions Explain self-efficacy and its role in the self- management of chronic health conditions Explain locus of control and how it affects self- management of chronic health conditions Explain the relationships between self-efficacy, locus of control, and self-management in a sample of adults with EDS

3. Self-Management Activities people undertake to create order and control as they incorporate a chronic health condition into their daily lives and seek the best possible quality of life Put together healthcare team Problem solving Communicating with healthcare providers Setting goals Diet, exercise, preventive care, stress reduction, rest Mental health

4. Self-Efficacy The degree to which an individual has confidence in her or his ability to do what needs to be done in order to achieve desired outcomes. Decreasing and managing pain Keeping pain from interfering with life Regulating activity Keeping fatigue from interfering with life Helping self feel better Dealing with frustration

5. Locus of Control To who/what individuals attribute the status of their condition (positive & negative) Internal Chance Doctors Others

6. This Study Survey of adult EDS patient attendees at 2010 EDNF conference, plus online survey n=151 Scientifically recognized, validated, condition- modified scales for self-efficacy (Lorig, et al.) and locus of control (MHLC – Wallston, et al.) Self-management behaviors derived from discussions with physicians and Stanford University Chronic Disease Self-Management program

7. Self-Efficacy 8-questions, 10-pt scale (Certainty) High score = high self-efficacy Mean=38; Median=38.5; Mode=40; sd=13.7 ½ of questions had mean scores 6 Keep EDS pain from interfering with sleep Regulate activity to avoid aggravating EDS Keep EDS pain from interfering with activities** Keep fatigue from interfering with activities**

8. Locus of Control 18 questions, 6-pt scale (Agreement) 4 subscales High score = high locus of control Internal locus of control highest All scores at approximate scale midpoint

9. Self-Management 19 questions, 5-pt scale (Likelihood) High score = high self-management Mean=80.35; Median=83; Mode=85; sd=10.6 Generally, very high scores

10. Relationships (SE-SM) SE regulate activity to avoid aggravating EDS SM develop/implement exercise plan SM take care of myself mentally & physically SM accept responsibility to manage problems SM speak up for myself about treatment/care SE keep fatigue from interfering with activities SM develop/implement exercise plan SM take care of myself mentally & physically

11. Relationships (SE-SM) SE keep pain from interfering/decrease pain SM develop/implement exercise plan SM take care of myself mentally & physically SM accept responsibility to manage problems SM find ways to reduce stress SE help self feel better/deal with frustrations SM develop/implement exercise plan SM take care of myself mentally & physically SM develop/maintain support systems SM search/gather information about EDS SM accept responsibility to manage problems

12. Conclusions Self-efficacy generally low Pain Fatigue Interfering with sleep and life Self-management key behaviors Exercise plan Physical & mental care Accept responsibility for problem-solving Self-efficacy enhanced with successful goal setting and achievement

13. References Bandura A (1997). Self-efficacy: The Exercise of Control. New York, NY: Freeman. Bodenheimer T, Lorig K, Holman H, Grumbach K (2002). Patient self-management of chronic disease in primary care. JAMA 288: 2469-2475. Farrell K, Wicks MN, Martin JC (2004). Chronic disease self-management improved with enhanced self- efficacy. Clinical Nursing Research 13: 289-308. Kralik D, Koch T, Price K, Howard N (2004). Chronic disease self-management: Taking action to create order. Journal of Clinical Nursing 13; 259-267. Lorig K, Holman H, Sobel D, Laurent D, Gonzalez V, Minor M (2000). Living a Healthy Life with Chronic Conditions. Palo Alto, CA: Bull Publications. Norman P, Bennett P, Smith C, Murphy S (1998). Health locus of control and health behavior. Journal of Health Psychology 3: 171-180. Wallston KA, Stein MJ, Smith KA (1994). Form C of the MHLC scales: A condition-specific measure of locus of control. Journal of Personality Assessment 63; 534-553.