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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


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


Healthcare Equation

Care Delivered

by Providers

Follow-through

by

Patients

- “Health”- Longevity- Quality of Life

+ =

Input Input Outcomes


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

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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


Kidney Disease Cycle

Nephrology News & Issues, May 2000


Patient Self-management


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


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


Patient Longevity Study

Key findings:

Self-management Active, comprehensive

self-management of kidney disease

Extensive training to learn enough to self-manage


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


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


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


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


ESRD Self-management Study

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


Functioning and Well-being: SF-12

Physical Component Summary: PCS

Mental Component Summary: MCS


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


Consistent Direction Across Studies

MCS/PCS = Morbidity/Mortality

Helping patients live long & well

Variable MCS PCS

Rehab ?

Self-care ?

Partnership ?

Knowledge ? ?


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


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


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.


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


Clues to Improve Compliance

Health literacy Control/autonomy Education, exercise,

& psychosocial support Demographic factors


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


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.”


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.”


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.”


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



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



Should



Offer support: “Teach them to fish” Help troubleshoot Reassure them that

they can succeed


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

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