Is Patient Centered Medication Adherence an Oxymoron? Self-Management of Medications in the Lived Experience of Chronic Illness
AHRQ's 2012 Annual Conference Slide Presentation
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Slide 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.
Slide 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.
Slide 3
"Adherence" is Often Abysmal.
Slide 4
We're Not Really Sure Why.
(in spite of >74K articles in PubMed)
Slide 5
It Makes Us (Health Professionals) Look Bad and Feel Foolish and Ineffective.
Slide 6
We Think Patients Would Be Much Better Off If They'd Do As They're Told.
Slide 7
Maybe Being "Patient-centered" Will Help? But What Does That Mean?
Slide 8
NOT "Patient-in-the-center" Us Looking At Them.
Slide 9
Image: A photograph of a patient in bed is shown surrounded by cartoon images of smiling doctors; arrows point from each doctor to the patient.
Slide 10
Image: An image of a deer is shown in crosshairs.
Slide 11
Through the Patient's Own Eyes. In Their Own Words.
Slide 12
Image: A photograph shows a masked and gowned surgical team peering down, as if they are being seen from the patient's point of view.
Source: stickyslides.blogspot.com
Slide 13
Ethnography
Grounded Theory
Qualitative
Interview-Based
Autobiographical
Slide 14
The Trajectory Model
Images: The covers of two books are shown: Unending Work and Care by Juliet M. Corbin and Anselm Strauss, and Good Days, Bad Days: The Self in Chronic Illness and Time by Kathy Charmaz.
Slide 15
Short Period of Evident Decline
Image: A line graph shows the abrupt decline in function for "mostly cancer" patients after the onset of incurable cancer. Specialist palliative care input is available at the beginning of the decline; the decline continues "often a few years, but... usually over a few months" until death.
Source: 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.
Slide 16
Long term limitations with intermittent serious episodes
Image: A line graph shows a steady decline in function for "mostly heart and lung failure" patients. The steady decrease in function is occasionally interrupted by severe "dips," which are noted as "sometimes emergency hospital admissions." The decline continues "2-5 years, but death usually seems 'sudden'."
Source: 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.
Slide 17
Prolonged dwindling
Image: A line graph shows a "prolonged dwindling" in function for "mostly frailty and dementia" patients. Onset in the decrease "could be deficits in functional capacity, speech, cognition." The decline is "quite variable-up to 6-8 years" until death.
Source: 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.
Slide 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.
Slide 19
Illness Work
Household Work
Biographical Work
Slide 20
The BBC Chain
Image: The three "links" in the BBC Chain are shown connected to each other by double-headed arrows:
- Biography.
- Body.
- Conceptions of Self.
Slide 21
Health = Stable Alignment of Body, Biography and Identity
Slide 22
Primary Motivation of Chronically Ill Person Is To Restore/Maintain Stable Alignment of BBC Chain.
Slide 23
By Any Means Necessary.
Slide 24
If Regimen Helps Achieve Primary Goal, Then Person Will Follow, If Not Then Not.
Slide 25
Body Failure
E.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.
Slide 26
Body Failures Destabilize the BBC Chain.
Slide 27
Body Failure → Failed Performance → Loss of Self
Slide 28
Regimens Both Cause and Cure Body Failures.
Slide 29
Identity-Relevant Performances
Slide 30
Body Failure Only Has Biographical Significance If It Impedes Identity-relevant Performance.
Slide 31
Loss of Self is Fundamental Form of Suffering in Chronic Illness.
Slide 32
Image: A photo-collage shows pieces of hand-written text pasted over the photograph of a young woman. The text reads "I am so scared that I will never again be the person I was before I got sick. I miss her."
Source: www.postsecret.com
Slide 33
Meaning of Medication
(Esp. in relation to identity and biography)
Slide 34
To Take or Not To Take
=
To Be or Not To Be
Slide 35
Challenge is to Build and Test Interventions Based on Trajectory Model
Slide 36
Merge Qualitative With Quantitative
Slide 37
Caveats:
Health Literacy
Access
Acute vs. chronic
Intentional/Unintentional
Slide 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.
