Transition to Independence or

Why Won’t My Lupus Patient Take Her Meds???

Erica Lawson, MDUCSF

July 7, 2011

Fall, 2009: Observations in Clinic• Success in chronic illness self-management

varies tremendously among families– Wanting to be “normal”– Parental overprotection– Depression and pain– Lack of resources (transportation, language, etc.)– Poor illness comprehension

• Some patients/families successful• Others struggle tremendously, with health,

social & vocational consequences

Research Questions

• Are our patients successfully meeting social/educational/vocational milestones in adulthood?

• How can we help teens improve self-efficacy and achieve their goals in spite of illness?

• How can we prepare teens learn to manage chronic illness as independent adults?

• Are poor self-management skills impacting long-term health and quality of life outcomes?

Project #1: Transition Readiness Survey

• Cross-sectional transition readiness assessment of 52 teens age 13-21 with chronic rheumatic diagnosis

• Designed and administered 2008-2009• Data analysis Fall 2010– Messy data, lots of work– No significant associations between adherence

and other factors– Subjects lacking proficiency in many self-care skills

Project #1: Transition Readiness Survey

• Accepted as abstract/poster for PAS• Paper submitted and rejected, Spring 2011• Back to the drawing board: stratified analysis– Some skills improve with age– Low skill levels even among oldest subjects for tasks

that require interaction with adult-oriented systems: making appointments, managing insurance, etc.

– Not developmentally ready, or not learning the skills?– Resubmission planned for Summer 2011

Project #2: SLE Education & Employment Outcomes

• Assessment of long-term education and employment outcomes in adults with pediatric-onset lupus.

• Secondary analysis of the UCSF Lupus Outcomes Study cohort.

• The LOS– Longitudinal cohort study, 2002-present– 1204 adults with SLE, 10% pediatric-onset

Project #2: SLE Education & Employment Outcomes

• Analysis, January 2011– Pristine dataset, quick and easy to work with– Subjects with pSLE 50% less likely to be employed

than subjects with aSLE when controlling for demographics, disease activity, etc.

• Accepted as poster/plenary for PRSYM• Paper to be written…

Future Directions

• Grant-writing• SLE and depression outcomes project