Transcript Using the KDQOL - Mizzou
Using the KDQOL-36 to Improve Patient Care
Beth Witten, MSW, ACSW, LSCSW
Resource & Policy Associate Medical Education Institute, Inc.
1
Objectives
At the conclusion of this lesson you’ll be able to: State what health-related quality of life
isn’t
— and is Explain why and how we measure HRQOL Describe the KDQOL-36 survey Report how facilities should use the KDQOL-36 for patient plan of care & facility quality improvement 2
Medical Education Institute
MEI Mission:
Help people with chronic disease learn to manage and improve their health
MEI has developed or worked on: 3
What HRQOL Isn’t
4
HRQOL: What it
Isn’t
Quality of Life
5
Health-Related QOL: What it Is
Patient’s
perceived mental health
Patient’s
perceived physical health
How a chronic disease
interferes with day-to-day life
1 1 CDC -
www.cdc.gov/hrqol/index.htm
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How Not to Measure HRQOL:
Karnofsky Scale Staff-assessed Patient QOL 100
-
Normal, no evidence of disease 90 80 70
Normal ADLs, minor symptoms Normal activity with effort, symptoms Cares for self, nothing beyond
60 50 40 30 20 10 0 -
Requires occasional help; cares for self Considerable help & frequent care Disabled; needs special care/assistance Severely disabled, hospitalized Very sick, hospitalized, needs treatment Moribund
Dead
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How to Measure HRQOL
Ask patients about their lives Use a valid, reliable tool (paper & pencil) 8
Why Do We Measure HRQOL?
Unique outcome in its own right Independently predicts morbidity & mortality in ESRD —at least as strongly as Kt/V or serum albumin 9
Why Do We Measure HRQOL (cont.) ?
“ 60% of those on dialysis can return to work but require retraining, and most of the remaining 40% require no retraining whatsoever. These are people who can be active and productive, but only if they have the life-saving treatment they need so badly.” Sen. Hartke Testimony: 1972 10
Job Loss is the Rule in ESRD
Patients Age 18 - 55, May 1995 - June 2001 250,000 200,000 78,347 15,330 7,059 150,000 100,000 50,000 0 138,821 64% US Census in thousands Working Data Source: USRDS Special Data Request 2003 87,149 60,713 37% 6 Mo. Prior Not Working Loss of 22,457 jobs or 37% of prior workers 117,877 38,256 23% At Initiation Missing Data
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Job Loss/Disability Can Impoverish ESRD Families
70,000 60,000 50,000 40,000 30,000 20,000 10,000 0 Mean Family Income Private Disability (60%) SSDI (35%) SSI (Couple; 16%)
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Effect of Job Loss on Patients
“Hi my name is X, i’ve been on dialysis for 3 years and im only 36 years old. i got it from high blood pressure. well now i have no friends and im depressed and my life sucks. im a single person with no job and no life. dialysis sucks and i should just die.”
Actual quote from the dialysis_support listserv March, 2006
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Adjusted Annual Mortality Rate
Dialysis: 1996 - 2005 25 20 15 10 Network Core Indicator Project DOQI Guidelines Are we missing something?
5 CPMs Project
%
0 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005
USRDS 2007 Annual Data Report, Table H4 Period prevalent patients by age, gender, race, ethnicity, primary diagnosis, vintage 14
ESRD Clinical Performance Measures (CPMs) Before 2008
Adequacy of dialysis (toxins from blood) Access to blood (vascular or PD) Anemia (red cells in blood) Pressure (of blood) Electrolytes (in blood)
New ESRD CPM as of 4/1/08
Earliest data collection (CROWNWeb) - 2010 Percent of patients given the KDQOL-36 at least once per year Exclusions: A Kidney-Specific HRQOL Survey Kidney Disease Quality of Life (KDQOL) Developed by RAND in 1995 SF-36 as generic core + 98 kidney-specific Qs 17 Physical Component Summary (PCS) Mental Component Summary (MCS) • Physical Functioning • Role-Physical • Bodily Pain • General Health • Vitality • Social Functioning • Role-emotional • Mental Health 18 Interference with daily life Time to deal with kidney disease Frustration Feeling like a burden 19 General health Activity limits Ability to accomplish desired tasks Depression/anxiety Energy level Social activities 20 Impact of fluid & diet limits Ability to work around the house/travel Feeling depending on medical team Stress or worries Sex life Personal appearance 21 Too much of my time is spent dealing with my kidney disease (T/F) I feel like a burden on my family (T/F) During the past 4 weeks , to what extent were you bothered by itchy skin? How much does kidney disease bother you in the area of fluid restriction? 22 Interpretive Guidance at V552 states: The social worker must have a system for routine use of the assessment survey, evaluation of the results, and incorporation of the survey results into the development and updating of the psychosocial portion of the plan of care. 23 "The governing body that licenses and evaluates dialysis clinics has changed the rules for the betterment of patient care. I am very excited about the changes and look forward to working with you under these new rules. We are going to be taking a more complete look at patients from a holistic point of view. Each of the staff who work with you will be concerned with your mind, body, and spirit. We want you to have the very best quality of life possible. I will be talking to you about some issues or concerns you may have and asking you a lot more questions. Anything you don't want to answer is fine. Shall we begin?" - Mary Calzada, MSW, LCSW, posted 11/25/08 24 Obtain consent (each survey or in “blanket” consent) Ask patients to self-administer while on dialysis If patient can’t self-administer Ask for the first answer that comes to mind Beware of pleas to help answer questions Review scores with patients as soon as possible Brainstorm factors contributing to low scores Develop plan of care with IDT addressing medical, nursing, nutrition & psychosocial needs 25 Scoring: higher score = better health Each question has a max of 100 points Average items in each scale together If item is skipped: • Numerator = sum of points of all answered responses in scale • Denominator = maximum points per question multiplied by questions answered in scale • Result = score for that scale 26 1 1 Point in PCS RR mortality RR hosp. 2% 2% 1 Point in MCS RR mortality RR hosp. 1% 2% 1 Lowrie EG et al. Medical Outcomes Study Short Form-36: A consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis 41(6):1286-1292, 2003. 27 1 SD Below Mean 1 SD Above Higher Risk 16% of patients “Unstable” Average Risk 68% of patients Lower Risk 16% of patients 28 Trend individual patient scores over time 10-point change significantly increases risk of hospitalization & death (p <0.001) 1 10-point decrease should alert staff to consider whether patient is unstable & perform assessment & interdisciplinary plan of care Trend facility-level scores for QAPI What elements in population contribute to low scores What can staff do to improve scores What interventions improve outcomes 1 Mapes et al., Health-related quality of life as a predictor of mortality and hospitalization: The Dialysis Outcomes and Practice Patterns Study (DOPPS), Kidney Int. 44:339-349, 2003. 29 KDQOL-36 Free Scoring Template KDQOL Working Group website http://gim.med.ucla.edu/kdqol (register for downloads) 30 Gender/Age KDQOL Norms KDQOL Working Group website http://gim.med.ucla.edu/kdqol (register for downloads) 31 www.kdqol-complete-org 32 33 Enter scores into the Excel workbook or KDQOL COMPLETE Review scores of hospitalized or deceased patients Track & trend looking for patterns for QAPI Incorporate scores & survey responses into patients’ plans of care Identify interventions and apply them 34 Measuring HRQOL in Patients Excluded from the KDQOL-36 Patients under age 18 PedsQL is only kidney-specific HRQOL survey Other pediatric HRQOL surveys: www.proqolid.org Non-English speakers/readers Spanish will be included & other translations will be added to KDQOL COMPLETE Currently 18 translations of KDQOL-36 or KDQOL-SF 1.3 can be converted to KDQOL-36 by deleting certain questions, see KDQOL Working Group “downloads” website: http://gim.med.ucla.edu/kdqol 35 Interdisciplinary Interventions That Improved Outcomes in Randomized Control Clinical Trials The KDQOL Is Not Just About Psychosocial Interventions (or It Takes a Team) 36 Weekly substance concentrations in routine HD Standard in-center hemodialysis for 3 - 4 hours on M, W, F: NO normal levels of fluid or wastes Physiologic range Homeostasis Physiologic range Mon 45 hours Tues Weds 45 hours Thurs Fri Time 68 hours Sat Sun 37 Weekly substance concentrations in daily HD PD or longer/more frequent HD: Normal range of fluid and wastes Physiologic range Homeostasis Physiologic range 21 hrs Mon 21 hrs Tues 21 hrs Weds 21 hrs Thurs Fri 21 hrs Sat Time 45 hrs Sun 38 APD vs. CAPD – 6 month study. Gave patients more time to have a life 1 Icodextrin PD fluid – 13 week study. Caused fewer symptoms than glucose-based fluid 2 1 Bro S et al. Perit Dial Int . 1999 Nov-Dec;19(6):526-33 2 Guo A et al. Kidney Int Suppl . 2002 Oct;(81):S72-9 39 Short daily or nocturnal HD reduced cramps, headaches, hypotension, shortness of breath, and other symptoms, and improved HRQOL vs. standard HD. 3,4 3 Heidenheim AP et al. Am J Kidney Dis. 2003 Jul;42(1 Suppl):36-41. 4 Ting GO et al . Am J Kidney Dis . 2003 Nov;42(5):1020-35. 40 Using echocardiograms to adjust dry weight by measuring the inferior vena cava improved HRQOL vs. usual care. 5 5 Chang ST et al . Nephron Clin Pract . 2004;97(3):c90-7 41 Compared to oral iron, IV iron significantly increased hemoglobin levels and KDQOL scores. 13 Use of ESAs to treat anemia was associated with increased HRQOL. 14 13 Agarwal R et al. Am J Nephrol . 2006;26(5):445-54. 14 Beusterien KM et al. J Am Soc Nephrol. 1996 May;7(5):763-73 42 Use of cinacalcet to reduce PTH significantly reduced parathyroidectomies, cardiac hospitalizations, and fractures — and improved HRQOL. 15 15 Cunningham J et al. Kidney Int . 2005 Oct;68(4):1793-800 Improves depression, HRQOL, and stamina 8,9,10,11,12 8 Levendoglu F et al . J Nephrol . 2004 Nov-Dec;17(6):826-32 9 Painter P et al. Am J Kidney Dis . 2002 Feb;39(2):257-65 10 Painter P et al . Am J Kidney Dis . 2000 Sep;36(3):600-8 11 Tawney KW et al. Am J Kidney Dis . 2000 Sep;36(3):581-91 12 Molsted S et al. Nephron Clin Pract . 2004;96(3):c76-81 44 6 7 Helping patients cope with the stresses of ESRD improved HRQOL over usual care 6 Tsay SL et al . J Adv Nurs . 2005 Apr;50(1):39-46 7 Lii YC et al. J Clin Nurs . 2007 Nov;16(11C):268-75 45 Review scores & responses with patients soon after survey is completed Focus on areas where things are going well Focus on areas where scores & responses could improve Ask the patient to choose an area of most concern from below average score areas 46 Using a Solution-Oriented Approach to Intervening “What would you like to see different in this area a few months from now?” “How would your day-to-day life be different if this were better? What would you be doing?” “What steps are needed to get you to where you want to go?” “How might we partner together to reach your goal?” 47 I Want a Transplant” Mr. Smith 62-year old diabetic male on dialysis two years History of missing 4 - 5 treatments/month Felt disempowered Reported no pleasure in life Wanted to live 48 Understand missing treatments is barrier to transplant Recognize “why” I miss treatments Make a commitment to not miss any treatment for 30 days & see what happens Enroll in Transplant class to learn more to address fears of transplant Talk to my doctor & other patients about living with a transplant 49 Signed up for Transplant class Missed NO treatments for 30 days KDQOL-36 scores were significantly improved on the re-measurement “The process allowed me time to reflect, understand, and gain hope. The partnership with my social worker was key — her encouragement motivated me to take steps forward toward better managing my health.” - Mr. Smith 50 Facility policy determines where to file survey (chart or file) Chart notes should indicate: Scores & how they compare to mean (average) Level of risk for hospital/death Patient-reported factors contributing to low scores Patient & team goals Plan of care, including team roles QAPI notes should Track & trend facility-level scores, contributing elements, success of interventions 51 KDQOL Resources for Social Workers Available to all: Improving Dialysis Patient Health Related Quality of Life (Webinar) KDQOL Questions and Answers Both available at: www.kidney.org/professionals/CNSW/conditions.cfm Members only: CNSW Listserv & CNSW Listserv archive www.kidney.org/PROFESSIONALS/cnsw/listserv.cfm http://listserv.kidney.org/scripts/wa.exe?A0=CNSW 52 Resources for Social Workers To Provide Psychosocial Services CNSW Quality of Life Assessment Tools www.kidney.org/professionals/CNSW/pdf/QOL_AssessmentTools. pdf CNSW Standards of Practice www.kidney.org/professionals/CNSW/form_standards.cfm CNSW’s Outcomes Training Program (interventions) www.kidney.org/professionals/cnsw/otp.cfm Journal of Nephrology Social Workers (for current & archived issues, members) www.kidney.org/professionals/CNSW/JNSWonline/index.cfm 53 NKF’s KDOQI CKD Guideline 12 (functioning & well-being) www.kidney.org/professionals/Kdoqi/guidelines_ckd/p6_comp_g12. htm Wellness Programming article (Nephrology News & Issues) www.kidney.org/about/central/pdf/wellnessProgramming.pdf 54 A. Not my problem – we just remove urea B. Too complicated for ordinary humans C. A Lexus for every patient D. Patients’ perceived physical & mental function, and impact of a chronic disease on day-to-day life 55 A. CMS tells us to B. It predicts morbidity & mortality in ESRD C. Patients are more than their blood D. All of the above 56 Which Intervention Improved HRQOL in Controlled Trials? A. Skipping meals B. C. Moping about life on dialysis Longer and/or more frequent hemodialysis D. Entering the couch potato Olympics 57 Which Is a Solution-oriented Approach? A. “I know just what you should do!” B. “What could you do to improve only one area on your KDQOL survey a little and how will your life look then? C. “Look, you’re on dialysis. What do you expect?” D. “Oh my God, have you seen my caseload? We can talk about this in…2011.” 58 HRQOL is: Patient-perceived physical & mental functioning A predictor of morbidity & mortality in ESRD A measure of psychosocial instability Easy to measure using valid, reliable tools Actionable in the dialysis setting 59 60MOS SF Survey Domains
KDQOL-36: Burden of Kidney Disease
KDQOL-36: Symptoms/Problems
KDQOL-36: Effects of Kidney Disease on Daily Life
Sample KDQOL-36 Items
Plan of Care: Psychosocial Status
Framing the KDQOL-36 (From the CNSW Listserv)
Administering the KDQOL-36
Scoring the KDQOL-36
PCS & MCS Scores Predict
Morbidity & Mortality
Bell Shaped Curve
Trending Scores
New Fee Based Tool for Clinics
KDQOL COMPLETE Reports
Using the KDQOL-36
Healthy Kidneys Work 24/7
More Dialysis Is More Like Having Healthy Kidneys
Peritoneal Dialysis
More Hemodialysis
Reaching Ideal Dry Weight
Treating Anemia with Iron & ESAs
Maintaining Bone Mineral Balance
Exercise Training
Adaptation Training
Group Counseling
&
Using the KDQOL in Rehabilitation Planning
Case Example
Mr. Smith’s Personal Steps to Success
Follow up 45 Days Later…
Documenting Surveys
Still More Resources
Health-related Quality of Life is:
We Measure HRQOL Because:
Conclusion
Using the KDQOL-36 to Improve Patient Care
Questions?