Transcript Respecting the Burden of Adherence

Ronni AW Wetmore, RN, MS
Coordinator, Stanford Adult Cystic Fibrosis
Center
Speaker Bureau: Chiesi Pharmaceuticals
Nurse Advisory Board: Genentech
Pharmaceutical Company
Nurse Advisory Board: Gilead Pharmaceutical
Disease Advisory Board: Vertex Pharmaceutical
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Nebulizer Medications
Regular and Aggressive Airway Clearance Techniques
Exercise
Nutrition/Pancreatic Enzyme
Replacement/Supplemental Nutrition (ie: tube
feedings)
Supplemental Oxygen when warranted
Diabetes Maintenance
Liver Function Studies/Creatinine Studies
Minimum Four Times per Year CF Clinic
Appointments
Annual Blood Work, CXR/CT Chest
Bone Density Evaluation
Psycho-Social Evaluation
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A “Perfect” patient w/ CF spends at least two hours a day doing
treatments/therapies
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This evaluates to three working months a year doing CF
therapy/treatments/etc.
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And MORE if patient is sick and/or having a rough year
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This formula does NOT include TIME sitting in a hospital bed, waiting in
an ED, evaluations for surgeries, ENT, Endocrine, GI, Pain Clinic
appointments
Add, IV’s at home (when they can) and organizing IV mediation delivery
in addition to home care nursing service for lab draws and dressing
changes
This is simply Day to Day Maintenance—(a part time job)
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Adherence—The extent to which a patient
continues the agreed upon mode of
treatment under limited supervision when
faced with conflicting demands
Compliance—The act of conforming,
acquiescing or yielding
BOTH describe the degree to which a patient
correctly follows medical advice
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World wide, non-adherence is a major
obstacle to the effective delivery of health
care
WHO estimated that only 50% of patients with
chronic diseases follow treatment plan
recommendations
Low rates of adherence contribute
substantially to human and economic burden
of those with chronic conditions
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Up to 90% of diabetics do not take medications well
enough to benefit from the medications prescribed
33-50% of Cancer patients take less of their meds
than required to be effective
Only 75% of Congestive Heart Disease patients take
sufficient medication
40-60% of mentally ill patients take meds
infrequently or not at all
Less than 27% of depressed patients adhere to their
prescribed med regimen
In the US, 20-30% of prescriptions are never filled
Even with prescription fills, approximately 50%
patients never complete the full course of the
prescription
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High treatment burden (includes time
demands, cost demands, understanding of
importance of medications and therapies
Complexity of treatment burden
Lack of understanding of diagnosis, disease
process and prognosis
Intense desire to live “normal” lifestyle
Peer pressure
Job/Career/Family/Self demands
Overwhelmed with treatment burden
Tired, just tired
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The “maize of insurance, co-pay assistance
programs and the multitude of applications
assistance
Confusing applications, multiple phone #’s to
contact
Misunderstanding of desired effect of
medication, including possible side effects
during therapy, mis-use of medication
Ethnicity (groups may differ in attitudes, values
and beliefs about health and issues
Poor coping skills
Multiple disease processes
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“Sometimes I feel like I am running as fast as I
can, just to stand still.”
---Alice in Wonderland
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OPTIMISTIC-Determined, positive, accepts
diagnosis, confidence in therapy and care
team
HOPEFUL-Talks to family and professionals,
looks forward, prays
DISTRACTED-Tries to forget Cystic Fibrosis,
makes sacrifices for health, feels hopeless
AVOIDANT-avoids and/or passively deals
with Cystic Fibrosis whenever possible,
attempts to forget about it
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Recognize and understand patients personality
type, coping skills, and perception of illness
Ask open ended questions, then LISTEN to the
response
Make a contract or bargain, ie.: What can we do
together to help you?
What does the patient want to know? Allow time
for candid Q & A, expect and welcome “delicate
and personal” concerns
Recognize: The patient makes the ultimate
decision to adhere to prescribed regimen
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Be supportive, even when the patient “fails” at
his/her promise of commitment to adherence
Remind patient, life with Cystic Fibrosis is
NOT “normal”—suggest rather, life with CF is
“exceptional normal”
Life with CF require “exceptional normal”
attitude, understanding and dedication
Offer and practice mutual respect amongst CF
Care Team, Patient and Family, and
recognize, the patient makes the final
decision on his/her own adherence
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ENCOURAGE patient to BELIEVE he/she IS
“exceptional normal”
FORGIVE patient when he/she makes a mistake,
LEARN from it, move on
Promote patients sense of RESPONSIBILITY and
ACCEPTANCE of self care challenges
Encourage patient to be AWARE and HONESTand respect it
Encourage patient to take SOLICE and COMFORTwhen “it’s good and when it’s not so good”
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TRUST, SHARE, and COMMUNICATE—it’s
really the only way we can work together
FOCUS with patient on what is important
NOW and for his/her future well-being in the
“long-term”
Encourage patient to have a CONFIDANTE
Allow time to DREAM
Encourage FAITH, to believe, to hope and to
succeed
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Dawn Stevens McGuiness, former Cystic
Fibrosis Patient at Albany Medical Center,
Albany, New York
…Your “calculations of TIME spent doing daily
CF care” and your respect for the Burden of
TIME doing those self-care regiments, along
with the TIME spent at various Specialty
Clinics waiting….
You taught me to “Respect the Burden of
Adherence”
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United States Department of Education
National Center for Education Statistics
Egbert, N., Nanna, K., (Sept 2009): Assessing
health Literacy” Online Journal of Issues in
Nursing. Vol. 4, No. 3