Improving Symptoms

in 3-Part Harmony

Kathi Mooney RN PhD FAAN

University of Utah

How are we doing in

managing symptoms?• Key nursing role

• Over 30 years of research

• National supportive care guidelines

Symptoms are still common

during chemotherapy

Symptom N=358 %

Fatigue 86

Pain 80

Trouble sleeping 78

Nausea/vomiting 60

Depressed mood 52

Feeling nervous/anxious 49

Trouble thinking/concentrating 48

Numbness/tingling 42

Diarrhea 38

Sore mouth 38

Concern with changes in appearance 34

Prevalence of Symptoms Reported at Moderate or Severe Levels

Symptoms are still common at

end-of-life

Symptom N= 154 %

Fatigue 90

Pain 80

Poor appetite 77

Delirium 63

Anxiety 63

Depressed mood 62

Bowel issues- diarrhea/constipation 60

Difficulty sleeping 57

Difficulty breathing 45

Urinary incontinence 36

Nausea 34

Prevalence of Symptoms Reported at Moderate or Severe Levels

Consequences of

Poorly Controlled Symptoms

• Suffering

• Decreased quality of life

• Poor functional status

• Emergency departments

visits

• Unplanned hospitalizations

• Treatment delays

• Poor adherence to oral

therapies

• Discontinuance of

therapy

• Work absenteeism and

presenteeism

• Inability to carry out

family and societal roles

What about

Family Caregiver Well-being?

Symptom N= 154 %

Fatigue 84

Interference with normal activities 81

Anxiety 78

Difficulty sleeping 78

Depressed mood 73

Prevalence of Symptoms Reported at Moderate or Severe Levels

Consequence of

Poorly Controlled Caregiver Symptoms• Suffering

• Decreased quality of life

• Work absenteeism and

presenteeism

• Chronic stress

• Decreased patient comfort

• Increased risk for

cardiovascular disease,

stroke, cancer, and early death

• Increased risk for complicated grief

Cancer Moonshot Recommendations“Recommendation F: Accelerate research that can

identify approaches to monitor and manage patient

reported symptoms, and integrate the information to

revise and update national guidelines for symptom

control and support.

There is a compelling need to improve symptom care

for cancer patients and cancer survivors. Symptom

management is key not only to improve quality of life

but also for ensuring patient adherence to treatment

that will lead to improved therapeutic response and

ensure survival.”

Time for fresh ideas

Everyone has a role

• Inpatient oncology nurses

• Clinic/office oncology

nurses

• APRN oncology nurses

• Oncology managers and

administrators

• Oncology nurse educators

• Oncology nurse scientists

• Professional societies- ONS

Obstacles to Fresh Ideas

• Our own assumptions

• Organizational norms,

culture of health care,

science and academe

Combine to promote the current

context, values, and traditions

creating conformity

•

The value of dissonance

• Dissonance in music

• Seek out what is not harmonious

• Pushes you on to the next level of innovation

• Improvise

• Riff of others

Current Dissonance• Contextual Issues

– Symptoms occur when patients

are at home

– Patient teaching and resources

are not timely or tailored to

symptoms experienced

– Symptoms fluctuate with varying

patterns/intensity throughout

treatment-lowest at clinic visits

– Patient-initiated calls to the clinic

are infrequent (5% of the time

mod-severe)

• Clinical Inertia

– lack of treatment intensification in

a patient not at evidence-based

goals for care

– Clinical uncertainty about the

value of intensifying symptom

care

– Not utilizing evidence-based

guidelines

• Research Gaps and Innovation

• Policy and Systems Issues

– No reimbursement for telephone

based symptom monitoring or

for intensifying symptom care

– Inadequate tracking of

symptoms outcomes and lack of

adoption of supportive care

guidelines

– Ineffective symptom care

models

Precision Medicine

Personalized cancer treatment

Targeted to the specific genetic

and molecular signature of the

cancer

Tailored to the individual person

What about Precision

Care?

Precision Symptom Care

New Eyes for Symptom Care• Patient and Family-centric, timely,

accessible care

• Targeted to the symptoms the

patient is actually experiencing

• Does not require a clinic visit

• What patients and family

caregivers need, when they need

it, where they need it

• Optimized through technology to

minimize clinician time

• Scalable

• Automated assessment and

coaching

• Clinician decision support

Symptom Care at Home (SCH)

1. Automated monitoring of common

symptoms- presence, severity (1-10),

drill-down for rapid triage

2. Automated algorithm-based self-

management coaching based on

reported symptoms and intensity

3. Automated alerting of clinicians

for poorly controlled symptoms-

symptom graphs for patterns

4. Guideline-based decision support

system for clinicians to intensify

symptom care

Technology-aided care to monitor and treat symptoms at home

Symptom Care at Home• To date tested with > 650 patients during chemotherapy and 365

family caregivers providing end-of-life care

• All cancer diagnoses, disease stage, caregiver relationship, ages,

rural/urban, race/ethnicity

• Telephone Based- automated interactive voice response system

(IVR)

• Can be adapted for web or mobile versions

• During active treatment the average patient reported moderate-

severe symptoms on 43% of daily calls (4-10 on 10 point scale)

• During home hospice- moderate-severe patient symptoms were

reported on 67% of daily calls (4-10 on 10 point scale)

Symptom Care at Home- Chemotherapy N=358• Significantly less symptom

severity across all symptoms

than usual care (UC); p < .001;

(mixed effects modeling); 45% of the

severity level reported by UC

• 67% less severe symptom days

than UC (8-10 severity, 0-10 scale);

p<.001; (negative binominal regression)

• 39% less moderate symptom

days than UC (4-7 severity); p<.001

• 60% more mild days than UC (1-3

severity); p=.006

• 25% more asymptomatic days

than UC;(0- not present) p=.006

Symptom Care at Home

Home Hospice Patient Benefit

• Significantly less symptom

severity for patients than usual

hospice care; p< .001; moderate

effect, d= .55; (mixed effects modeling)

• Moderate to severe patient

symptom days reduced by 38% in

SCH group compared to usual

hospice care; p<.001; (negative

binominal regression)

• Rapid onset of patient benefit;

p=.04; (Kaplan-Meier log rank to first

asymptomatic day)

Symptom Care at Home for Family Caregivers

• 51% reduction in the number

of daily moderate-to-severe

symptoms for family

caregivers over usual hospice

care (p<.001); (negative binominal

regression)

• Caregiver mood was

significantly better for SCH

than usual hospice care,

p=.003; (mixed effects modeling)

•

SCH Protective Effect on Caregiver Vitality

• Caregiver vitality

maintained during

caregiving for SCH

participants but not for

usual hospice care.

• Lower fatigue, better

sleep, and less activity

disruption for SCH

caregivers compared to

usual hospice care, p<.001

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Caregiver Vitality

Higher score equates with loss of vitality

• In SCH (but not UC), caregiver symptom

reduction mediated a reduction in patient

symptoms, p=.027

• Supporting caregiver’s

health translates to

improved patient

symptom outcomes;

both are benefited

• 6th month of bereavement, SCH spouses showed

better outcomes than UC spouses (p=.01)

Everyone oncology nurse

has a role

Our challenge is to disrupt

current approaches to

symptom care to

effectively bring symptom

relief to cancer patients

and their families

3-Part Harmony• The melody belongs to the patient and the

family

• The nurse, in all roles, provides the

overarching harmony to support the

melody

• Innovation undergirds the melody with

harmony that bridges the difficult issues of

tailoring, delivery, and precision care