state of the science

ONS State‐of‐the‐Science Lectureship: Illness Uncertainty in Adult Cancer Patients Content Description: In his presentation, Donald Bailey, PhD, RN, will synthesize the research literature on illness uncertainty in the cancer experience, categorize these data by cancer care continuum phase, and suggest directions for future research and the use of research to advance practice in oncology nursing. Bailey is an associate professor at Duke University, School of Nursing. Having received his PhD from the University of North Carolina at Chapel Hill, his work is published in various publications including The Daily Reflector, The News and Observer, Emory Nursing Magazine, and Carolina Nursing Magazine.

Coordinator / Speaker: Donald Bailey, PHD RN Assistant Professor Duke University School of Nursing Durham, NC [email protected] Full Disclosure: Nothing to Disclose

Illness Uncertainty in Adult Cancer Patients

Donald E Bailey Jr Ph D R NDonald E. Bailey Jr., Ph.D., R.N.

Associate Professor

Duke University School of Nursing

Durham, NC

Purpose / ObjectivesPurpose / Objectives

Synthesize the research literature on illness uncertainty

in the cancer experience

C t i t di b ti h Categorize studies by cancer care continuum phase

Suggest possible directions for future research and

the use of research to advance oncology nursing practice

The inability to determine the meaning of illness-related events

The cognitive state created when a person cannot adequately structure or categorize

UncertaintyUncertainty: : DefinitionDefinition

cannot adequately structure or categorize illness-related events due to a lack of sufficient cues

Occurs in a situation where the decision maker is unable to assign definite value to objects or events and/or is unable to predict outcomes

Mishel, 1988

Illness uncertainty has been identified asthe main source of psychosocial distress in potentially life-threatening illness. It affects:

Significance of UncertaintySignificance of Uncertainty

• Persons with cancer

Uncertainty is associated with:

• Long-term cancer survivors

• Families of persons with cancer

across the care continuum

• Anxiety, Depression, Sexual dysfunction, Insomnia, Fatigue

• Poorer quality of life (QOL)

Mishel’s (1988, 1990) uncertainty theories

provide a framework for understanding

individual responses to the experience of cancer,

and can be used to:

Significance of UncertaintySignificance of Uncertainty

Sensitize oncology nurses to the prevalence of uncertainty and its associated distress

Facilitate development and testing of nursing interventions

Guide advancements in oncology nursing practice

Consequences of UncertaintyConsequences of Uncertainty

Heightened anxiety and tension

Less optimism and hope

f Tension in family relationships, work, recreation

Weakened sense of mastery and control

Heightened sense of threat and danger

Original Model of Perceived Uncertainty in Illness

(+)

Coping Coping Mobilizing &Mobilizing &

Affect ControlAffect ControlStrategiesStrategies

DangerDanger

(Mishel, 1988)

Stimuli Stimuli Frame Frame

Structure Structure Providers Providers

Cognitive Cognitive CapacitiesCapacities

(+)

( ) Inference Inference IllusionIllusion

Coping Coping Buffering Buffering StrategiesStrategies

OpportunityOpportunity

UncertaintyUncertaintyAdjustmentAdjustment

(+) ( )

(+)App

rais

alA

ppra

isal

Theoretical Theoretical FrameworkFramework

Mishel’s Reconceptualized

Uncertainty in Illness Theory (1990)

proposed that individual growth and

self-organization are appropriate endpoints

for continual uncertainty associated with

chronic conditions

Reconceptualized Reconceptualized

Uncertainty in Illness TheoryUncertainty in Illness Theory

Is an expansion of the original theory

Applies to the constant ncertaint fo nd in chronic illness Applies to the constant uncertainty found in chronic illness

Applies to:

• Chronic illnesses with remissions and exacerbations

• Illnesses with possible recurrence and extension

ReconceptualizationReconceptualization

Focus of the theory is not on management of uncertainty, but instead on the integration of uncertainty into life and the development of a new value system.

Reconceptualized theory of uncertainty in illness is based on:

• Principles of chaos theory (which explains irregular behavior or disorder in complex systems)

• Qualitative studies of chronically ill patients (MS, lupus)

ReconceptualizationReconceptualization

The person with chronic illness is considered to be

a complex system with irregular behavior.

In a complex system with irregular behavior In a complex system with irregular behavior,

random changes can create instability in the system.

Fluctuations can feed back on themselves,

creating stronger fluctuations.

Reconceptualized Uncertainty ModelReconceptualized Uncertainty Model

Stimuli Frame Stimuli Frame • Symptom Pattern • Symptom Pattern

• Event Familiarity • Event Familiarity

• Event Congruency • Event Congruency

Uncertainty Opportunity

( )

( )

Structure Providers Structure Providers • Health Care Providers • Health Care Providers

• Social Support • Social Support

• Education • Education

• Prior Life Experience • Prior Life Experience

Cognitive Cognitive CapacitiesCapacities

(+)(+)

( )

Methods & Data SourcesMethods & Data Sources

Computerized search of literature published in English between 1981 and 2011

Databases included: Search terms included:

• PubMed / Medline

CINAHL

• Uncertainty

C• CINAHL

• PsycINFO

• Web of Science

• Cancer

• Mishel

Seeking: Applications of Mishel’s Uncertainty in Illness theory and/or use of MUIS scales in studies of adults with cancer across the continuum of cancer care

Limited to research on adults

Research QuestionsResearch Questions

To what extent has illness uncertainty been studied across

Scope of survey:Illness uncertainty in patients, survivors, and their families

and uncertainty associated with screening for cancer

the phases of the cancer care continuum?

How have studies of illness uncertainty been distributed

across cancer sites?

How has illness uncertainty been assessed in adult oncology patients?

What are the primary themes related to uncertainty across

the cancer care continuum?

New York Times (June 1, 2004):

Significance of Uncertainty Significance of Uncertainty

in Cancer Survivorshipin Cancer Survivorship

“Fundamental issue for cancer survivors is uncertainty Fundamental issue for cancer survivors is uncertainty.

Is it gone or will it come back?”

“It’s the not knowing.

It’s living with uncertainty – the critical issue.”

Cancer Care TrajectoryCancer Care Trajectory

Start Here

Treatment with Intent to Cure

Cancer‐Free Survival

Recurrence / Recurrence / Second CancerSecond Cancer

Managed Chronic or Intermittent Disease

Survivorship CareLate effects management

and surveillance for recurrence and second cancers

Palliative care is provided throughout the cancer care trajectory. (IOM, 2005)

Palliative Treatment

Diagnosis and Diagnosis and StagingStaging

DeathDeath

Treatment Treatment FailureFailure

Realities of Cancer Survivorship Realities of Cancer Survivorship

Estimated Number of Persons Alive in U.S.

Diagnosed with Cancer on January 1, 2007

Breast

Melanoma

Lung

Other

22%

7%

3%

15%

By site of cancer

11.7 million survivors

Prostate

ColorectalGynecologic

Hematologic

Urinary Tract

19%

10%9%

8%

7%

Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2007, National Cancer Institute. Bethesda, MD. http://seer.cancer.gov/csr/1975_2007Based on November 2009 SEER data submission, posted to the SEER web site, 2010.

Cancer Survivors by Age GroupCancer Survivors by Age GroupEstimated Number of Persons Alive in U.S. Diagnosed with Cancer on Jan. 1, 2007

30%

40%

50%

f Tot

al

Total number of persons: 11.7 million

5.6

Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2007, National Cancer Institute. Bethesda, MD. http://seer.cancer.gov/csr/1975_2007Based on November 2009 SEER data submission, posted to the SEER web site, 2010.

Age (yr)

0%

10%

20%

0-19 20-29 30-39 40-49 50-59 60-69 70+

% o

f

2.7

2.7

0.90.40.20.1

Prevention Screening Diagnosis Treatment Survivorship End-of-Life

Tobacco control Cancer screening

Oncology consultations

Chemotherapy Long-term follow up &

Palliation

Phases of the Cancer Care ContinuumPhases of the Cancer Care Continuum

Diet

Physical activity

Sun exposure

Virus exposure

Alcohol use

Chemoprevention

screening

Awareness of cancer signs &symptoms

consultations

Tumor staging

Patient counseling & decision making

Surgery

Radiation therapy

Adjuvant therapy

Symptom management

Psychosocial care

follow-up & surveillance

Late-effects management

Rehabilitation

Coping

Health promotion

Spiritual issues

Hospice

Source: Hewitt, M., Greenfield, S., & Stovall, E. (2005).

From Cancer Patient to Cancer Survivor: Lost in Transition. Washington DC: National Academies Press p. 24, Box 2-2.

The 6 communication functions can help improve survival and QOL in each phase of the cancer care continuum

Image not available

Adapted from Epstein RM, Street RL Jr. (2007 ) Patient-centered communication in cancer care: Promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute. Fig 4.1, p. 68.

Image not available.

6 Functions of Patient/Family − ClinicianCommunication in Cancer Settings

Fostering healing relationships

Exchanging information

Responding to emotions

Managing uncertainty

Making decisions

Enabling patient self-management

Source: Epstein RM, Street RL Jr (2007). Patient-centered communication in cancer care: Promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute. Table 4.1, p. 67.

78 published research studies:

FindingsFindings

Type of Study

Quantitative studies

Qualitative studies

Mixed methods studies

Study Design

Cross-sectional design

Longitudinal design

%

85%

12%

4%

n

66

9

3

%

65%

35%

n

51

27

Supporting literature

Specific literature reviews

Additional literature:

Nations represented: 9 Uncertainty Intervention?

Yes

No

%

26%

74%

n

20

58

13

2

Prevention Screening Diagnosis Treatment Survivorship End-of-Life

Summary: Research Studies of Uncertainty in the Phases of the Cancer Continuum

4 studies0 studies

2 Quant.

6 studies

6 Quant.

32 studies 35 studies 1 study

Type Type Type Type Type

31 Quant. 27 Quant. 0 Quant.2 Qual.

3 Breast / Gyn1 Gyn

0 Qual.

4 Breast 1 Gyn1 Prostate

8 Breast 1 Colon

10 Gyn1 Hematologic

12 Prostate2 Mixed

27 Breast 1 Colon1 Liver1 Lung5 Mixed

1 Prostate

Site Site Site Site Site

1 Qual. 5 Qual. 3 Mixed

1 Qual.

4 X-sec0 Long.

3 X-sec3 Long.

19 X-sec13 Long.

24 X-sec11 Long.

1 X-sec0 Long.

Published Studies of Uncertainty in Adults with Cancer By Year

5

6

7

8

lications

Includes uncertainty in patients, survivors, and their families and uncertainty associated with screening for cancer

0

1

2

3

4

5

Num

ber of Pub

Year

Uncertainty in Adults with Cancer:Number of Studies by Cancer Site

Hematologic

HPV

LiverLung

Mixed

6%

Breast

Prostate

Colon

Gynecologic

53%

17%

16%

3%Total: 78 publications

MishelMishel Uncertainty in Illness Scales for AdultsUncertainty in Illness Scales for Adults

Mishel Uncertainty in Illness Scale (original): MUIS–A (also identified as MUIS)• For use with: Adults hospitalized with acute illness,

and receiving medical intervention• Initial publication: 1981• Further development: 1982, 1986, 1989;

Multiple versions, variable number of items

Mishel Uncertainty in Illness Scale–Community: MUIS–C• For use with: Adults chronically ill but not hospitalized,

and not receiving medical intervention; or, family members of chronically ill adults

• Initial publication: 1986• Further development: 1989; multiple versions, variable number of items

Mishel Uncertainty in Illness Scale–Survivor: MUIS–S• For use with: Cancer survivors• Initial publication: 1996

Mishel Uncertainty in Illness Scales for Adults

Mishel Uncertainty in Illness Scale (MUIS) has been translated into:

Cross-Cultural Research

English-language Mishel Uncertainty in Illness Scales used in:

• U.S. 51 studies

• Canada 3 studies

• U.S. / Ireland comparison 1 study

• Arabic

• Chinese (MUIS: 5 studies in Taiwan; 1 in Hong Kong)

• German

• Greek

• Hebrew

• Korean (MUIS: 1 study)

• Swedish

• Thai (MUIS-C: 1 study)

Alternative Methods of Assessing UncertaintyAlternative Methods of Assessing Uncertainty

Includes n=15 studies which:

Used instruments other than MUIS, or

Addressed uncertainty with qualitative methods only

Study locations:

• U.S. 7 studies

• Canada 3 studies

• U.S. / Ireland comparison 1 study

• U.K. 1 study

• Germany 1 study

• Netherlands 2 studies

Study locations:

Published Studies Using MUIS to Measure Uncertaintyin Phases of the Cancer Control Continuum

Prevention Screening Diagnosis Treatment Survivorship End of Life

None

Other measures: 4

MUIS: 5

MUIS-C: 1

MUIS: 11

MUIS-C: 9

MUIS-S: 6

Other: 1

MUIS: 24

MUIS-C: 6

Other: 2 Other: 3

None: 2

MUIS not used

None: 6

MUIS not used

MUIS not used

Comparative Research on Illness Uncertainty in Population Subgroups

Male vs. Female

Race / Ethnicity (in U.S.)

Patient & Family Member

Af i A i Whit

3

9

8

Subgroups Number of Studies

Age Groups

• African American, White• Hispanic, White• African American, Hispanic, White

• Patients aged >50 yr vs. <50 yr

Clinical Status

• Cancer vs. no cancer

822

3

2• Pain vs no pain 1

Uncertainty Management Intervention Studies

Screening

By Cancer Care Continuum Phase

1

Phase of Continuum

Number of Intervention Studies

Diagnosis

Treatment

Survivorship

End of Life Care

2

10

7

0

Total 20

Uncertainty Management Intervention

4 components:

Patient-provider communication

Increased knowledge of cancer

Problem solving

Cognitive reframing

Themes

Uncertainty and Distress (Anxiety, Depression)

Uncertainty and Quality of Life

Uncertainty and Transition

Uncertainty and Personal Growth

Uncertainty and Educational / Informational Needs

Summary of Findings

Screening

Diagnosis

By Phases of the Cancer Care Continuum

g

Treatment

Survivorship

End of Life Care

Overall Impact of Uncertainty Management Interventions

Uncertainty is reduced most often in interventions addressing women

Uncertainty management strategies are improved Uncertainty management strategies are improved across all of the interventions

Interventions addressing the stimuli frame antecedent are most often successful

Transferring these findings to practice

Ethical & Policy Implications

Patients need care by nurses who are sensitive to

illness-related uncertainty and who can help them

acquire information, cognitive strategies, and skills

to deal with that uncertainty.

Interventions could be provided during routine care

across the cancer trajectory if policies were changed

to reimburse oncology and primary care nurses

for their time.

Translation to Practice

Little is known about what can be done

as part of routine clinical care to lower the burden

of cancer-related illness uncertainty.

Improved knowledge and understanding of uncertainty

theory will allow further development of interventions

and their translation to practice

Where Does the Theory Stand Now?

Uncertainty theory refers to a cognitive state and the interventions address cognition with consistent successful results

Need more uncertainty management intervention studies Need more uncertainty management intervention studies with cross-cultural and minority cancer populations to further test and expand the theory.

Need to move successful uncertainty management interventions into practice

Future Research

Further studies of uncertainty are needed in the areas of genetic information, prevention and screening for primary cancer, and end of life. These 3 areas are ripe for inter-professional research teams to advance the science of oncology care.

• Link findings on cortisol changes in breast cancer survivors (e.g., Porter et al., 2003) to measurements of illness uncertainty in the same population.

Research combining measures of uncertainty with assessment of physiological variables in adult populations with (or at risk for) cancer.

Life is uncertain.Life is uncertain.

Eat dessert firstEat dessert firstEat dessert first.Eat dessert first.

The EndThe End

State of the Science Literature: Illness Uncertainty in Adult Cancer Patients

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