Transition to Independence

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Transition to Independence

  1. 1. Transition to Independence or Why Won’t My Lupus Patient Take Her Meds??? Erica Lawson, MD UCSF July 7, 2011
  2. 2. Fall, 2009: Observations in Clinic <ul><li>Success in chronic illness self-management varies tremendously among families </li></ul><ul><ul><li>Wanting to be “normal” </li></ul></ul><ul><ul><li>Parental overprotection </li></ul></ul><ul><ul><li>Depression and pain </li></ul></ul><ul><ul><li>Lack of resources (transportation, language, etc.) </li></ul></ul><ul><ul><li>Poor illness comprehension </li></ul></ul><ul><li>Some patients/families successful </li></ul><ul><li>Others struggle tremendously, with health, social & vocational consequences </li></ul>
  3. 3. Research Questions <ul><li>Are our patients successfully meeting social/educational/vocational milestones in adulthood? </li></ul><ul><li>How can we help teens improve self-efficacy and achieve their goals in spite of illness? </li></ul><ul><li>How can we prepare teens learn to manage chronic illness as independent adults? </li></ul><ul><li>Are poor self-management skills impacting long-term health and quality of life outcomes? </li></ul>
  4. 4. Project #1: Transition Readiness Survey <ul><li>Cross-sectional transition readiness assessment of 52 teens age 13-21 with chronic rheumatic diagnosis </li></ul><ul><li>Designed and administered 2008-2009 </li></ul><ul><li>Data analysis Fall 2010 </li></ul><ul><ul><li>Messy data, lots of work </li></ul></ul><ul><ul><li>No significant associations between adherence and other factors </li></ul></ul><ul><ul><li>Subjects lacking proficiency in many self-care skills </li></ul></ul>
  5. 5. Project #1: Transition Readiness Survey <ul><li>Accepted as abstract/poster for PAS </li></ul><ul><li>Paper submitted and rejected, Spring 2011 </li></ul><ul><li>Back to the drawing board: stratified analysis </li></ul><ul><ul><li>Some skills improve with age </li></ul></ul><ul><ul><li>Low skill levels even among oldest subjects for tasks that require interaction with adult-oriented systems: making appointments, managing insurance, etc. </li></ul></ul><ul><ul><li>Not developmentally ready, or not learning the skills? </li></ul></ul><ul><ul><li>Resubmission planned for Summer 2011 </li></ul></ul>
  6. 6. Project #2: SLE Education & Employment Outcomes <ul><li>Assessment of long-term education and employment outcomes in adults with pediatric-onset lupus. </li></ul><ul><li>Secondary analysis of the UCSF Lupus Outcomes Study cohort. </li></ul><ul><li>The LOS </li></ul><ul><ul><li>Longitudinal cohort study, 2002-present </li></ul></ul><ul><ul><li>1204 adults with SLE, 10% pediatric-onset </li></ul></ul>
  7. 7. Project #2: SLE Education & Employment Outcomes <ul><li>Analysis, January 2011 </li></ul><ul><ul><li>Pristine dataset, quick and easy to work with </li></ul></ul><ul><ul><li>Subjects with pSLE 50% less likely to be employed than subjects with aSLE when controlling for demographics, disease activity, etc. </li></ul></ul><ul><li>Accepted as poster/plenary for PRSYM </li></ul><ul><li>Paper to be written… </li></ul>
  8. 8. Future Directions <ul><li>Grant-writing </li></ul><ul><li>SLE and depression outcomes project </li></ul>

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