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Bruce L. Lambert, Ph.D. Professor Department of Pharmacy Administration

Is Patient Centered Medication Adherence an Oxymoron? Self-Management of Medications in the Lived E xperience of Chronic I llness. Bruce L. Lambert, Ph.D. Professor Department of Pharmacy Administration University of Illinois at Chicago lambertb@uic.edu.

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Bruce L. Lambert, Ph.D. Professor Department of Pharmacy Administration

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  1. Is Patient Centered Medication Adherence an Oxymoron? Self-Management of Medications in the Lived Experience of Chronic Illness Bruce L. Lambert, Ph.D. Professor Department of Pharmacy Administration University of Illinois at Chicago lambertb@uic.edu This project was supported in part by grant 1U19HS021093-01 from AHRQ. The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ. AHRQ Annual Meeting

  2. Overview What is Patient-Centered? The Trajectory Model of Chronic Illness Body-Biography-Conceptions of Self The Meaning of Medication Keeping the Balance and Monitoring the Self System AHRQ Annual Meeting

  3. “Adherence” is often abysmal. AHRQ Annual Meeting

  4. We’re not really sure why.(in spite of > 74K articles in PubMed) AHRQ Annual Meeting

  5. It makes us (health professionals) look bad and feel foolish and ineffective. AHRQ Annual Meeting

  6. We think patients would be much better off if they’d do as they’re told. AHRQ Annual Meeting

  7. Maybe being “patient-centered” will help? But what does that mean? AHRQ Annual Meeting

  8. NOT“patient-in-the-center” us looking at them. AHRQ Annual Meeting

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  11. Through the patient’s own eyes. In their own words. AHRQ Annual Meeting

  12. AHRQ Annual Meeting

  13. EthnographyGrounded TheoryQualitativeInterview-BasedAutobiographical AHRQ Annual Meeting

  14. The Trajectory Model AHRQ Annual Meeting

  15. Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003. AHRQ Annual Meeting

  16. Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003. AHRQ Annual Meeting

  17. Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003. AHRQ Annual Meeting

  18. Defining Characteristics of Chronic Illness (Corbin & Strauss) • Home • Quality of life • Lifelong Work • Phases • Variability of work by phase • Illness, household and biographical work • Arrangements • Variability of arrangements • Continuous rearrangement • Work of health professionals only part of overall work • Articulation of lay and professional work • Concept of trajectory AHRQ Annual Meeting

  19. Illness WorkHousehold WorkBiographical Work AHRQ Annual Meeting

  20. The BBC Chain Biography Conceptions of Self Body AHRQ Annual Meeting

  21. Health =Stable Alignment of Body, Biography and Identity AHRQ Annual Meeting

  22. Primary motivation of chronically ill person is to restore/maintain stable alignment of BBC Chain. AHRQ Annual Meeting

  23. By any means necessary. AHRQ Annual Meeting

  24. If regimen helps achieve primary goal, then person will follow, if not then not. AHRQ Annual Meeting

  25. Body Failuree.g., paralysis, tremors, limps, memory loss, incontinence, fatigue, constipation, shortness of breath, impotence, dizziness, weakness, pain, blindness, deafness, slurred speech, scars, sores, deformities, amputations, etc. AHRQ Annual Meeting

  26. Body failures destabilize the BBC Chain. AHRQ Annual Meeting

  27. Body Failure ->Failed Performance->Loss of Self AHRQ Annual Meeting

  28. Regimens both cause and cure body failures. AHRQ Annual Meeting

  29. Identity-Relevant Performances AHRQ Annual Meeting

  30. Body failure only has biographical significance if it impedes identity-relevant performance. AHRQ Annual Meeting

  31. Loss of self is fundamental form of suffering in chronic illness. AHRQ Annual Meeting

  32. www.postsecret.com AHRQ Annual Meeting

  33. Meaning of Medication(esp. in relation to identity and biography) AHRQ Annual Meeting

  34. To take or not to take=To be or not to be AHRQ Annual Meeting

  35. Challenge is to build and test interventions based on trajectory model AHRQ Annual Meeting

  36. Merge Qualitative with Quantitative AHRQ Annual Meeting

  37. Caveats:Health LiteracyAccessAcute vs. chronicIntentional/Unintentional AHRQ Annual Meeting

  38. Summary • Ethnographic, qualitative accounts, e.g., The Trajectory Model, offer the most authentically patient-centered descriptions of the experience of chronic illness. • Restoring/maintaining stability of BBC Chain is main motivator for chronically ill people • Decisions about medication are decisions about identity and biography • Hypothesis: Regimens that stabilize BBC chain, that facilitate biographical work, that produce positive identity transformations, will be adhered to. Others will not. AHRQ Annual Meeting

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