The Patients Role in PD: Importance of Selfmanagement

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The Patients Role in PD Importance of
Self-management

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Medical Education Institute (MEI)

• Non-profit organization founded in 1993
• Mission
• Help people with chronic disease learn to manage
  and improve their health

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MEI Vision for Kidney Patients

• Patients get positive messages about CKD
• Patients get complete information
• Patients choose modalities to maximize QOL
• Patients receive ongoing support to succeed
• Professionals receive ongoing support to help
  patients succeed
• Patients live longer and have improved QOL

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Life Options Rehabilitation Program
Dedicated to helping people live long and live
well with kidney disease www.lifeoptions.org www.
kidneyschool.org [phone]
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Healthcare Equation
Input
Input
Outcomes
Care Delivered by Providers
Follow- through by Patients
- Health - Longevity - Quality of Life


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Patients May Fulfill Their Responsibilities If...

• ...they understand what to do...
• ...they believe they can do it
• ...it helps them to feel much better quickly
• ...theyre not depressed
• ...they can afford it

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Patient Responsibilities on PD

• Attend clinic visits
• Complete all treatments
• Keep treatment records
• Notice report symptoms
• Take multiple medications
• Make diet changes
• Limit fluid intake
• Care for access/catheter
• Exercise

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Kidney Disease Cycle
Nephrology News Issues, May 2000
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Patient Self-management
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Patient Opinion Studies

• Questions patients have
• How long will I live?
• How well will I live?
• Messages that resonate
• Hope Life can still be good
• Learn Ask questions/get answers
• Adhere Follow the treatment plan

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Patient Longevity Study

• Qualitative interview study
• 18 long-term (15 yr. ) hemodialysis patients
• Lengthy face-to-face interviews
• Snowball sampling to find patients
• Published in Nephrology Nursing Journal and
  Qualitative Health Research

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Patient Longevity Study

• Key findings
• Self-management
• Active, comprehensive self-management of kidney
  disease
• Extensive training to learn enough to
  self-manage

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Patient Longevity Study

• Suggesting treatments
• Seeking information
• Using alternative therapies
• Self-care during dialysis
• Shared care (patients/professionals)
• Selectively reporting/managing symptoms
• Self-advocacy
• Impression management

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Patient Longevity Study

• Key findings Affirmations
• Self preservation I want to live.
• Self identity I am still me.
• Self worth I am still valuable.
• Self efficacy I am in control.

Curtin RB, Mapes D, Petillo M, Oberley E.
Long-term Dialysis Survivors A Transformational
Experience. Qual Health Res 12(5)609-624, 2002
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Patient Longevity Study

• Information is essential
• Successful outcome in chronic disease is
  transformation
• Adaptation to changed self
• Adaptation to changed circumstance
• Active, comprehensive self-management

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ESRD Self-management Study

• N372 patients from 17 facilities
• Collected the following data
• Demographic information
• FWB (MOS-SF 12)
• Self-management activities
• Kidney disease knowledge
• Manuscript submitted to Patient Education
  Counseling, 2003

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ESRD Self-management Study

• Key findings
• More kidney knowledge, higher FWB
• More self-management, higher FWB

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Functioning and Well-being SF-12
Mental Component Summary MCS
Physical Component Summary PCS
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Self-management Areas

• Suggesting treatments
• Seeking information
• Using alternative therapies
• Self-care during dialysis
• Shared care (patients/professionals)
• Selectively reporting/managing symptoms
• Self-advocacy
• Impression management

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Consistent Direction Across Studies

• MCS/PCS Morbidity/Mortality
• Helping patients live long well

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Other Studies of Self-management

• Self-Delivery of Hemodialysis Care A Therapy
  in Itself
• Meers et al., AJKD 27(6)844-847, 1996
• Control group matched to experimental group for
  age, gender, and comorbidity
• Finding
• Patients trained for self-care had higher
  functioning well-being than full-care patients

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Other Studies of Self-management

• Evidence Suggesting that a Chronic Disease
  Self-management Program can Improve Health Status
  while Reducing Hospitalization
• Lorig et al., Medical Care 37(1)5-14, 1999
• 6-mo. randomized trial of 952 patients
• Findings
• Patients who took part in a self-management
  program exercised more, communicated better with
  doctors, reported better health, and had fewer
  hospitalizations

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Other Studies of Self-management

• Diabetes Education and Care Management
  Significantly Improve Patient Outcomes in the
  Dialysis Unit
• McMurray et al., AJKD 40(3)566-575, 2002
• 1-yr controlled study of diabetes educ 83 pts.
• Finding
• HD PD patients who took part in diabetes
  self-mgmt education had significantly better
  quality of life, foot care, eye care, and
  hospitalization rates.

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Self-management vs. Compliance

• Compliance
• Medical professionals are in charge
• Patients obey doctors orders
• Patients have less power than professionals

• Self-management
• Patients consult with medical professionals
• Patients act in informed self-interest
• Patients are equal partners in their care

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Clues to Improve Compliance

• Health literacy
• Control/autonomy
• Education, exercise, psychosocial support
• Demographic factors

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Compliance What Works?

• Meta-analysis of 153 intervention studies to
  improve compliance
• No single strategy showed a clear advantage over
  another
• Interventions with cognitive, behavioral, and
  affective components were more effective than
  single-focus interventions.
• Roter et al., Effectiveness of interventions to
  improve patient compliance a meta-analysis.Med
  Care 36(8)1138-61, 1998

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Expert Patients

• I have now been on PD for almost 5 years and
  find I can hardly drink anything. I might have a
  couple of pieces of fruit but, apart from that, I
  have half a pint of milk in the mornings on
  cereal and just half a small glass of fluid to
  take my tablets. My urine output is down to
  20-30 mls per day, so no help there.

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Expert Patients

• I have been on PD for about 7 years and have
  made lots of changes to my therapy over time. I
  just made a very minor change (added a cycle,
  decreased volume slightly and shortened the dwell
  time by about 10 minutes each and that helped.)
  Sometimes it seems like my body gets too used to
  something and needs a change to jump start.

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Expert Patients

• Before my hernia surgery, my nephrologist said,
  in a routine way, that I would need to have a
  subclavian catheter and do temporary HD for about
  6 weeks afterward. Whoa there! What about the
  LVRO CCPD like I used twice before? I asked him.
• Oh, he said, looking surprised. He had not
  thought of that. As long as the surgeon agrees,
  then of course we could do that, he said.

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How can we help PD patients to become experts?

• Offer hope
• Validate choice of PD
• Offer hope for a good life
• Give examples of success
• Link patients together

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How can we help PD patients to become experts?

• Offer resources
• Assess learning needs
• Encourage questions
• Provide source material
• Reassess learning needs

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How can we help PD patients to become experts?
Should
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How can we help PD patients to become experts?

• Offer support
• Teach them to fish
• Help troubleshoot
• Reassure them that they can succeed

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Conclusions

• Chronic disease requires a new paradigm
• A successful outcome is self-management
• PD patients benefit from a self-management
  approach that supports their independence
• Partnering with your patients to help them
  become experts can improve outcomes