ASN DIALYSIS ADVISORY GROUP · 2019-10-27 · This is an interesting statement, particularly in...

$: ASN DIALYSIS ADVISORY GROUP · 2019-10-27 · This is an interesting statement, particularly in light of the upcoming Quality Incentive Program \⠀儀䤀倀尩 that is being introd\൵ced$
ASN DIALYSIS CURRICULUM

ASN DIALYSIS ADVISORY GROUP

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Quality of Life in Dialysis

Suzanne Watnick, MD

Professor of Medicine

Training Program Director

Oregon Health & Science University

2


DISCLOSURES:

• None


Outline of Talk

What is Quality of Life (Definition)?What is QOL on dialysis?

What contributes to this?What basic literature is important?How do we practically assess QOL?How do we improve it?


Case to illustrate the issues…

Mr M is a 73 yo caucasian gentleman, on chronic HD x 4 years due to T2 DM

• He feels constant fatigue, frequent back pain, and intermittent pruritus

• He has compression fractures, and insists on stopping treatments when in too much pain

• He wants to know 3 things:

• ‘Doc, am I like everyone else?’

• ‘What can you do to help me feel better?’

• ‘Is this as good as it gets?’


What is QOL?

Active learning exercise:

• How would you define quality of life for Dialysis patients for whom you have cared?

Some other definitions:

• QOL – A complete state of physical, mental, and social well being and not merely an absence of disease in infirmity.*

• Health related QOL – The health demands that are intimately related to health or disease.**

Presenter

Presentation Notes

*Definition from the World Health Organization ** Definition from Unruh ML, Hess R, Assessment of Health-Related Quality of Life Among Patients with Chronic Kidney Disease. Am J Kidney Dis, 14; 345-352, 2007


What contributes to QOL?

Doctors may focus on:Control of:•Acid-base status•BP and volume status•Cardiovascular Risk•Diet/nutrition•Mineral/Bone disorders•Small/middle molecules

Patients may focus on:How do I feel !?!

Presenter

Presentation Notes

Adequacy is a concept, not a number, and includes more than the issues listed above.


What impacts a patient’s QOL?

Quality of Life

Sleep Disturbance

Perceived health

Spirituality

Happiness

Pain

Sexual Dysfunction

Marital satisfaction

Social Support

Depression

Anxiety

Cognitive function

Physical Activity

Social Domains

Psychological DomainsPhysical Functioning

Domains

Global Domains

Presenter

Presentation Notes

An entire module is included in this curriculum regarding Depression in the ESRD population Please refer to that for details on that topic. Note this model is adapted from the WHO model of Health-related quality of life. Unruh M, Hess R. Assessment of Health-related Quality of Life Among Patients with Chronic Kidney Disease. Advances in Chronic Kidney Disease, vol 14, 2007, p345-352


How do we assess general QOL?

Questionnaire Population Domains

Kidney Disease QOL Questionnaire HD QOL & Symptoms

CHOICE Questionnaire HD and PD QOL

McGill Quality of Life Scale Kidney disease

QOL

Illness Effects Questionnaire HD QOL & effects

Dialysis Symptom Index HD P & E Symptoms*

Modified Edmonton Symptom Scale HD P & E Symptoms

Patient Symptom Form CKD P & E Symptoms

Presenter

Presentation Notes

Partial list adopted from text and Table 1 of Weisbord S, Symptoms and Their Correlates in Chronic Kidney Disease, Advances in Chronic Kidney Disease 14, 319-327, 2007 * P & E Symptoms stands for Physical and Emotional Symptoms


Tool Comparison for Specific Selected Symptoms Affecting QOL

Domain Validated Tools: Examples

Interventions include:

Comments

Social Support

KDQOL-SFSF-36MSP

Social Support Group ‘ SS improved compliance & access to care

Anxiety SCID-1PRIME-MD

CBTPharmacologic Rx

Check forDepression

Pain Bodily Pain ScaleMPG

Pain Management WHO analgesic ladderExercise

Adjust meds for kidney and liver disease

Sexual Dysfunction

IIEF-5 PDE-5 Inhibitors Minimal data for Rx in ESRD

10

Presenter

Presentation Notes

KDQOL = Kidney Disease Quality of Life Short Form MSP = Multidimensional Scale of Perceived Social Support SCID-1 = Structured Clinical Interview for DSM-IV PRIME-MD = primary care evaluation of mental disorders CBT = Cognitive Behavioral Therapy MPG = McGill Pain Questionnaire IIEF-5 = International Index of Erectile Function PDE-5 = Phosphodiesterase 5


Typical Symptomatology (1)

symptoms with age & comorbidity

• Fatigue most prevalent:

• 82% (HD) – 87% (PD)

• Itching, muscle cramps, SOB: each >40%

Dialysis dose not associated with sx burden

Physical symptoms only ONE PART of ‘Quality of Life’

Presenter

Presentation Notes

First two bullet points: Merkkus et al, Physical symptoms and quality of life in patients on chronic dialysis: Results of the Netherlands Cooperative Study on Adequacy of Dialysis (NECOSAD). Nephrol Dial Transplant 14:1163-1170, 1999


Typical Symptomatology (2)

Most prevalent symptoms

• Dry skin (72%), fatigue (69%), itching (54%), bone & joint pain (50%)

Most bothersome symptoms

• Bone & joint pain, sexual arousal

• Half of symptoms were reported as ‘more than somewhat bothersome’

Treatment - examples

• Dry Skin & Pruritus: Emollients, dermatology referral, dietary counseling

• Fatigue: Can assess and treat for OSA (obstructive sleep apnea)

• Bone & Joint Pain: WHO analgesic ladder, CKD-MBD treatment

Presenter

Presentation Notes

Symptoms reported from: Weisbord at al, Prevalence, Severity and Importance of physical and emotional symptoms in chronic hemodialysis patients. J Am Soc Nephrol 16:2487-2494, 2005


Physical Functioning DomainsPain

Etiologies:

• Treatment related – needles, fluid & electrolyte shifts

• Renal bone disease

• Comorbidity related

Common (25-50%) & severe

Associated with:

• depression, low QOL scores, insomnia, anxiety, dialysis withdrawal

Presenter

Presentation Notes

Davison SN, Jhangri GS, The impact of chronic pain on depression sleep, and the desire to withdraw from dialysis in hemodialysis patients. J Pain Symptom Manage 30:465-473, 2005 Kimmel PL et al, ESRD patient quality of life: Symptoms, spiritual beliefs, psychosocial factors, and ethnicity. Am J Kidney Dis 42:713-721, 2003


Physical Functioning Domains

Sleep Disturbances

Etiologies include:

• Sleep apnea, Restless leg syndrome (RLS), altered sleep-wake cycles

Common (41-83%) & associated with:

• Pain, depression, poor Global QOL, adverse cardiovascular outcomes

Consider sleep hygiene assessment before pharmacologic Rx

Polysomnagraphy +/- CPAP, RLS therapy

• Including d/c antidopaminergic agents

Presenter

Presentation Notes

Kimmel PL, Go to bed and get a good night’s sleep: You need your rest! Am J Kidney Dis 35:1221-1223, 2000 Parker KP et al, Nocturnal sleep, daytime sleepiness, and quality of life in stable patients on hemodialysis. Health Qual Life Outcomes 1:68, 2003 Walker et al, Sleep complaints are common in a dialysis unit. AM J Kidney Dis 26:751-756, 1995 Shayamsumander AK et al, Sleepiness, sleeplessness, and pain in end-stage renal disease: Distressing symptoms for patients. Semin Dial 18:109-118, 2005


Social Domains: Sexual Dysfunction

Etiologies include:

• Vascular disease, hormonal changes, medications, psychological concerns

Range of reported sxs from 33-83%

• including ED, decreased interest, poor arousal

• One of the most bothersome symptoms

Treatment –

• 18% of those w/sxs received therapy

• medications effective vs placebo

• Phosphodiesterase inhibitors have been used:

• caution for use in population with high burden of cardiovascular disease


Social Domains: Social Support

Types: support via: • Cognitive –information/knowledge

• Emotional – concerns & feelings

• Materials – goods & services

Improvements in:• aid and access to care

• symptoms of depression and anxiety

• adherence, direct physiologic effects.

Demonstrated relationships between social supports and:

• Items listed above, also

• quality of life and survival

Presenter

Presentation Notes

Cohen SD et al, Social Support and Chronic Kidney Disease: An Update. Advances in Chronic Kidney Disease, Volume 14, p 335-344, 2007


Psychological Domains

Depression

Most common psychiatric disorder in chronic dialysis patients

• Prevalence estimates ~20% of MDD

• Dx via DSM-IV criteria

• Screening tools include BDI, PHQ-9, CES-D

Therapies: non- and pharmacological

• SSRIs with few side effects, low dose & titrate

• Counseling (eg CBT), exercise, Rx anxiety

• Understudied

Presenter

Presentation Notes

BDI = beck depression inventory, PHQ-9 = patient health questionnaire, CES-D = Center for Epidemiologic Studies Depression Scale. CBT = cognitive behavioral therapy



Cognitive Impairment (1)

Definition of cognitive impairment:

• new deficit e 2 areas of cognitive functioning

• Memory, executive function, attention/processing, perceptual motor, language

• Diagnosis: 3MS score < 80 or MMSE < 24

• Prevalence not well documented

• Chart dx - 2.9% but with formal testing:• 37% severe impairment

• 36% moderate

• 14% mild

Presenter

Presentation Notes

Modero, Gul, and Sarnak, Cognitive Function in Chronic Kidney Disease. Seminars in Dialysis, Vol 21, p29-37, 2008



Cognitive Impairment (2)

Etiologies (risk factors) include: •Traditional vascular: large & small vessel vascular disease (HTN, DM, age, smoking)

•Nontraditional vascular (hypercoagulable, hemostatic, inflammatory, oxidative stress)

•Nonvascular (Anemia, hyperparathyroidism, polypharmacy, sleep, age, education)

Treatment should focus on above etiologiesAssociated with:•increase risk of death, decreased quality of life, increased hospitalization/healthcare utilization

Presenter

Presentation Notes

Modero, Gul, and Sarnak, Cognitive Function in Chronic Kidney Disease. Seminars in Dialysis, Vol 21, p29-37, 2008


Global Domains

Important to address general issues related to:•Spirituality•Perception of health•Overall happiness


Our Patient…

Physical Function domains•Sleep disturbance & pain addressed

Social domains•Family and friends spent more time with him

Psychological domains•Patient was depressed, started therapy

Global domains•Patient assured that he was not ‘alone’ (major fear of his), ensured presence of spiritual support, daily activities


Input objective measures of QOL

Easy Recipe: Quality of Life Assessment

S/

O/

A/

P/

Input patient’s subjective assessment

of QOL

Continue what you are doing Change something

Are goals being achieved NoYes

Presenter

Presentation Notes

This is a simple way to think about assessing your patient by his or her subjective view, and using tools to obtain objective measures. I use an algorithm similar to this when I assess dialysis adequacy, and it seems to lend itself to this forum as well.


Future Needs Assessment: Shaping the Research and Policy Agenda

Identification of broad themes to improve patient-centered outcomes•Decrease morbidity and mortality

•Enhance Quality of Life•From Kidney Research National Dialogue

Presenter

Presentation Notes

Kidney Research National Dialogue, supported by the National Institute of Diabetes, Digestive, and Kidney Diseases. Mehrotra et al, Dialysis Therapies: A National Dialogue, CJASN 9: 812-814, 2014


“Several said the government is making a crucial mistake by rating performance [of dialysis clinics] by lab tests, not outcomes or measures that reflect patients’ quality of life. ‘Mortality, morbidity, and infection—that’s the bottom line,’ said [a former dialysis-clinic owner]. ‘It’s easy to adjust the labs. What good is it if you have good numbers, but everyone’s dying or in the hospital?’”

- Robin Fields, in “God Help You. You’re on Dialysis.” The Atlantic, December 2010

Presenter

Presentation Notes

This is an interesting statement, particularly in light of the upcoming Quality Incentive Program (QIP) that is being introduced to comprise 2% of the ’bundled’ dialysis payments. The Government will be looking for ways to measure performance, and various QOL indicators could be considered. This series of articles in The Atlantic has brought more attention to the concerns of patient on dialysis, and has brought more recognition regarding the quality of life of our patients.


Quality of Life is…

What is important to the patient•Thus an essential component of what we should consider when we care for those around us

Composed of Global, Psychological, Social, and Physical functioning domains

Assessable in the dialysis unit

Impacted by looking, listening and feeling with your patients

ASN DIALYSIS ADVISORY GROUP · 2019-10-27 · This is an interesting statement, particularly in...

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