Download - download
The Medical Education Institute Supported by Baxter Healthcare Corporation
The Patient’s Role in PD: Importance of Self-management
The Medical Education Institute, Inc.
Medical Education Institute (MEI) Non-profit organization founded in 1993 Mission:
Help people with chronic disease learn to manage and improve their health
The Medical Education Institute, Inc.
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
The Medical Education Institute Supported by Baxter Healthcare Corporation
Life Options Rehabilitation Program
Dedicated to helping people live long and live well with kidney disease
www.lifeoptions.orgwww.kidneyschool.org(800) 468-7777
The Medical Education Institute, Inc.
Healthcare Equation
Care Delivered
by Providers
Follow-through
by
Patients
- “Health”- Longevity- Quality of Life
+ =
Input Input Outcomes
The Medical Education Institute, Inc.
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 ...they’re not depressed ...they can afford it
QuickTime™ and a
Photo CD Decompressor
are needed to use this picture
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
Kidney Disease Cycle
Nephrology News & Issues, May 2000
The Medical Education Institute, Inc.
Patient Self-management
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
Patient Longevity Study
Key findings:
Self-management Active, comprehensive
self-management of kidney disease
Extensive training to learn enough to self-manage
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
ESRD Self-management Study
N=372 patients from 17 facilitiesCollected the following data: Demographic information FWB (MOS-SF 12) Self-management activities Kidney disease knowledge
Manuscript submitted to Patient Education & Counseling, 2003
The Medical Education Institute, Inc.
ESRD Self-management Study
Key findings: More kidney knowledge, higher FWB More self-management, higher FWB
The Medical Education Institute, Inc.
Functioning and Well-being: SF-12
Physical Component Summary: PCS
Mental Component Summary: MCS
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
Consistent Direction Across Studies
MCS/PCS = Morbidity/Mortality
Helping patients live long & well
Variable MCS PCS
Rehab ?
Self-care ?
Partnership ?
Knowledge ? ?
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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.
The Medical Education Institute, Inc.
Self-management vs. Compliance
Compliance Medical professionals
are in charge Patients obey doctor’s
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
The Medical Education Institute, Inc.
Clues to Improve Compliance
Health literacy Control/autonomy Education, exercise,
& psychosocial support Demographic factors
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
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 ml’s per day, so no help there.”
The Medical Education Institute, Inc.
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.”
The Medical Education Institute, Inc.
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.”
The Medical Education Institute, Inc.
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
The Medical Education Institute, Inc.
How can we help PD patients to become experts?
Offer resources: Assess learning needs Encourage questions Provide source material Reassess learning needs
The Medical Education Institute, Inc.
How can we help PD patients to become experts?
Should
The Medical Education Institute, Inc.
How can we help PD patients to become experts?
Offer support: “Teach them to fish” Help troubleshoot Reassure them that
they can succeed
The Medical Education Institute, Inc.
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