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 AdministrationUniversity 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.

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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

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AHRQ Annual Meeting

“Adherence” is often abysmal.

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We’re not really sure why.

(in spite of > 74K articles in PubMed)

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It makes us (health professionals) look bad and feel foolish

and ineffective.September 10, 2012 AHRQ Annual Meeting 5

We think patients would be much

better off if they’d do as they’re told.

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Maybe being “patient-centered” will help? But what

does that mean?September 10, 2012 AHRQ Annual Meeting 7

NOT“patient-in-the-center”

us looking at them.

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Through the patient’s own eyes. In their

own words.

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EthnographyGrounded Theory

QualitativeInterview-BasedAutobiographical

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The Trajectory ModelSeptember 10, 2012 AHRQ Annual Meeting 14

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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.

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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.

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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.

Defining Characteristics of Chronic Illness (Corbin & Strauss)

1. Home2. Quality of life3. Lifelong Work4. Phases5. Variability of work by

phase6. Illness, household and

biographical work7. Arrangements8. Variability of

arrangements

9. Continuous rearrangement

10. Work of health professionals only part of overall work

11. Articulation of lay and professional work

12. Concept of trajectory

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Illness WorkHousehold Work

Biographical Work

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The BBC Chain

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Body

Biography Conceptions of Self

Health =Stable Alignment of Body, Biography and

IdentitySeptember 10, 2012 AHRQ Annual Meeting 21

Primary motivation of chronically ill person is

to restore/maintain stable alignment of

BBC Chain.September 10, 2012 AHRQ Annual Meeting 22

By any means necessary.

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If regimen helps achieve primary goal,

then person will follow, if not then

not.September 10, 2012 AHRQ Annual Meeting 24

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.

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Body failures destabilize the BBC

Chain.

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Body Failure ->Failed Performance->

Loss of Self

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Regimens both cause and cure body

failures.

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Identity-Relevant Performances

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Body failure only has biographical

significance if it impedes identity-

relevant performance.September 10, 2012 AHRQ Annual Meeting 30

Loss of self is fundamental form of suffering in chronic

illness.September 10, 2012 AHRQ Annual Meeting 31

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www.postsecret.com

Meaning of Medication

(esp. in relation to identity and biography)

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To take or not to take=

To be or not to be

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Challenge is to build and test

interventions based on trajectory model

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Merge Qualitative with Quantitative

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Caveats:Health Literacy

AccessAcute vs. chronic

Intentional/Unintentional

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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.