Respecting the Burden of Adherence

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Respecting the Burden of Adherence

• Ronni AW Wetmore, RN, MS
• Coordinator, Stanford Adult Cystic Fibrosis Center

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Disclosure

• Speaker Bureau Chiesi Pharmaceuticals
• Nurse Advisory Board Genentech Pharmaceutical
  Company
• Nurse Advisory Board Gilead Pharmaceutical
• Disease Advisory Board Vertex Pharmaceutical

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To Respect It, We Need to Know It What IS the
Burden?

• Nebulizer Medications
• Regular and Aggressive Airway Clearance
  Techniques
• Exercise
• Nutrition/Pancreatic Enzyme Replacement/Supplement
  al 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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Time Schedule in a 24 Hour Day for the CF patient

• A Perfect patient w/ CF spends at least two
  hours a day doing treatments/therapies
• This evaluates to three working months a year
  doing CF therapy/treatments/etc.
• And MORE if patient is sick and/or having a rough
  year
• 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, IVs 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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We Know the Burden.WHY is Adherence Important?
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Adherence vs. ComplianceIs there a difference?

• AdherenceThe extent to which a patient continues
  the agreed upon mode of treatment under limited
  supervision when faced with conflicting demands
• ComplianceThe act of conforming, acquiescing or
  yielding
• BOTH describe the degree to which a patient
  correctly follows medical advice

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Why is Adherence Important?

• 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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The Statistics Reveal

• 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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WHY is Adherence so Poor?

• 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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WHY? Continued

• 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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Adherence is Hard Work

• Sometimes I feel like I am running as fast as I
  can, just to stand still.
• ---Alice in
  Wonderland

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Opportunities to Respect and Support Adherence.
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Recognize Patient Personality Types

• 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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Opportunities to Respect and Support Adherence

• 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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---Continued

• Be supportive, even when the patient fails at
  his/her promise of commitment to adherence
• Remind patient, life with Cystic Fibrosis is NOT
  normalsuggest 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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Ronnis TOP TEN Suggestions to Respect, Promote
and Support Adherence

• 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 HONEST- and
  respect it
• Encourage patient to take SOLICE and COMFORT-when
  its good and when its not so good

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---Continued

• TRUST, SHARE, and COMMUNICATEits 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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If you are wondering if someone needs
encouragement, if he/she is breathing, the answer
is, YES..Author Unknown
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Special Thank You.

• 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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References

• 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