Stephanie Gilbertson-White, PhD, RN Alexandra Bursic Paula Sherwood, PhD, RN, FAAN

School of Nursing

Symptom representations and coping efforts for pain and numbness/tingling in women with a history of ovarian cancerStephanie Gilbertson-White, PhD, RNAlexandra BursicPaula Sherwood, PhD, RN, FAANHeidi Donovan, PhD, [email protected]

School of NursingDepartment Acute and Tertiary Care

Funding Agencies: NIH/NINR F31 NR07556; ONS/Orthobiotech; NIH/NINR T32 NR011972

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Background

• Pain and numbness/tingling are two symptoms that are frequently reported as distressing by women with ovarian cancer. (Stavraka et al., 2012)

• Etiology and treatment strategies are significantly different for these two symptoms. (NCCN, 2012; APS, 2008)

• Cognitive representations have been found to be significantly associated with coping efforts across a variety of diseases. (Leventhal, 2011)

• Little is known about factors that influence patients’ symptom-related coping efforts.

• The relationships between individual dimensions of representations and symptom-related coping efforts have not been previously explored.

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Theoretical Framework

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Leventhal’s Common-Sense Model of Illness Representations

(Power, Swartzman, & Robinson, 2011)

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Leventhal’s Common-Sense Model of Illness Representations

Individuals have “common-sense understandings” (i.e., representations) of health problems (e.g., cancer related symptoms) that guide how they cope with a problem.

Representations consist of • Cognitions about:

– Identity – Cause(s)

– Timeline

– Consequences

– Cure or controllability

• Emotional responses

(Leventhal, H., Meyer, D. & Nerenz, D. 1980)

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Purpose and Specific Aims

The purpose of this study was to describe the relationships between symptom representations and coping in women with a history of ovarian cancer experiencing pain and/or numbness and tingling.

Specific aims

1. To describe coping efforts and symptom representations for pain and numbness/tingling.

2. To evaluate whether coping efforts are associated with symptom representations after controlling for disease and personal characteristics.

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Methods – Design and Sample

Secondary analysis of a cross-sectional, descriptive study (N=713) conducted via surveys mailed to women with ovarian cancer who were members of the National Ovarian Cancer Coalition (NOCC).

This analysis includes participants (n=266) identifying pain or numbness/tingling as one of their top three “most noticed” symptoms in past week.

•Pain (n=152)

•Numbness/tingling (n=144)

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Methods – Key Variables

Independent variables: Symptom Representations

Symptom Representation Questionnaire (Donovan et al, 2008):

– 15-item scale per symptom

– Response options of 0 (strongly disagree) to 4 (strongly agree)

– Identity (severity), cause, timeline, consequences, cure/control, emotional response (distress).

– Higher scores indicate more negative representations.

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Methods – Key Variables

Dependent variables: Coping Efforts

Daily Coping Inventory (DCI) (Stone, Kennedy-Moore, & Neale, 1995):

• 9-item yes/no inventory of categories of coping strategies.

• Factor analysis was used on the DCI resulting in a 2-factor solution (problem-focused and emotion-focused).

• Sum scores for problem-focused coping (0-6) and emotion-focused coping (0-3) used in analyses.

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Coping SubscalesLabel Daily Coping Inventory Item

Emotion- focused coping

Problem-focused coping

Distraction

Diverted attention away from the symptom by thinking about other things or engaging in some activity.

X

ReframingTried to see the symptom in a different light that made it seem more bearable.

X

Expressed emotion

Expressed emotions in response to the symptom to reduce tension, anxiety, or frustration.

X

Emotional support

Sought or found emotional support from loved ones, friends, or professionals.

X

Relaxation Did something to relax. X

Spiritual support

Sought or found spiritual comfort and support. X

PlanningThought about ways to manage the symptom, or gathered information about ways to manage it.

X

Manage symptom

Actually did something to manage the symptom. X

Acceptance

Accepted that the symptom had occurred, but that nothing could be done about it (reverse scored).

X

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Analysis

• Descriptive statistics • Separate multiple linear regression

analyses for pain and numbness/tingling to determine the relationship between symptom representations and each coping style– Co-variates: optimism, depression, total

number of symptoms, survivorship status

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Results

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Sample (n=266)Mean (SD)

Mean age in years 54.7 (11.5)

n (%)

Pain as “most noticed symptom” 152 (57%)*

Numbness/tingling as “most noticed symptom” 144 (54%)*

Race

White 252 (95.1%)

Other 13 (4.9%)

Education

Some high school/high school graduate 44 (16.6%)

Some college 96 (36.2%)

College graduate/postgraduate training 125 (47.2%)

*30 participants selected both pain and n/t

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Descriptive Statistics for C0-variates

Mean (SD)

Optimism (0-24) 16.5 (4.3)

Depression severity (0 to10 NRS) 2.4 (2.5)

Number of symptoms (0 to 22) 11.2 (4.5)

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Percentage of patients in each survivorship status category

14%

36%

10%

40%

Survivorship Status

No evidence of dis-ease, no recurrence >5 yr.

No evidence of dis-ease, no recurrence <5 yr.

No evidence of dis-ease with recurrence < 5 yr.

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Mean identity representation scores

Pain Numbness/Tingling0

2

4

6

8

10

Symptom Severity

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Mean representation subscale scores

Treat

men

t Cau

se

Cance

r Cau

se

Cure/

Contr

ol

Conse

quen

ces

Timel

ine

Emot

iona

l 0

0.5

1

1.5

2

2.5

3

3.5

4

Pain Numbness/Tingling

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Mean coping sub-scale scores

Pain Numbness/Tingling

0

1

2

3

4

5

6

Emotion-focused coping

Pain Numbness/Tingling0

0.5

1

1.5

2

2.5

3Problem-focused coping

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Percentage of patients reporting use of each coping strategy

Distra

ctio

n

Refra

min

g

Expre

ssed

em

otio

n

Emot

iona

l sup

port

Relax

atio

n

Spirit

ual s

uppo

rt

Plann

ing

Man

age sy

mpt

om

Accep

tanc

e0

10

20

30

40

50

60

70

80

90

100

Pain Numbness/tinglingCoping strategy

Perc

en

tag

e (

%)

Emotion-focused coping

Problem-focused coping

Multiple linear regression analyses of predictors of coping efforts Emotion-focused coping Problem-focused coping

PainNumbness/

TinglingPain

Numbness/Tingling

PredictorOverall Model

R2

p.219.003

.346<.001

.273<.001

.231

.002

Disease & Personal Characteristics*

Survivorship statusbetaR2p

.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642

Number of symptomsbetaR2p

.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290

Depression severitybetaR2p

-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations

Representation BlockR2p

.069

.214.247

<.001.190

<.001.170.002

Symptom severity (Identity representation)

betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937

Treatment cause representationbetaR2p

-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542

Cancer cause representationbetaR2p

.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938

Cure/control representationbetaR2p

.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034

Consequences representationbetaR2p

.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227

Timeline representationbetaR2p

-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355

Emotional representationbetaR2p

.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165

Block 1 was significant in all models except for problem-focused coping for numbness/tingling.


PainNumbness/

TinglingPain

Numbness/Tingling


R2

p.219.003

.346<.001

.273<.001

.231

.002



.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642


.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290


-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations


.069

.214.247

<.001.190

<.001.170.002


betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937


-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542


.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938


.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034


.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227


-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355


.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165



PainNumbness/

TinglingPain

Numbness/Tingling


R2

p.219.003

.346<.001

.273<.001

.231

.002



.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642


.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290


-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations


.069

.214.247

<.001.190

<.001.170.002


betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937


-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542


.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938


.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034


.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227


-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355


.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165



PainNumbness/

TinglingPain

Numbness/Tingling


R2

p.219.003

.346<.001

.273<.001

.231

.002



.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642


.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290


-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations


.069

.214.247

<.001.190

<.001.170.002


betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937


-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542


.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938


.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034


.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227


-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355


.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165



PainNumbness/

TinglingPain

Numbness/Tingling


R2

p.219.003

.346<.001

.273<.001

.231

.002



.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642


.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290


-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations


.069

.214.247

<.001.190

<.001.170.002


betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937


-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542


.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938


.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034


.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227


-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355


.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165



PainNumbness/

TinglingPain

Numbness/Tingling


R2

p.219.003

.346<.001

.273<.001

.231

.002



.025

.003

.807

.049

.002

.596

-.076.004.438

-.044.002.642


.310

.050

.009

-.061.002.592

.202

.021

.068

.124

.008

.290


-.098.005.384

.000<.001.999

-.182.032.085

-.096.006.366

OptimismbetaR2p

.065

.003

.508

.163

.020

.092

.163

.020

.079

.108

.009

.260

Representations


.069

.214.247

<.001.190

<.001.170.002


betaR2p

-.006<.001.958

.304

.038

.022

.114

.007

.291

.010<.001.937


-.047.002.612

.238

.043

.015

-.157.020.080

-.059.003.542


.092

.005

.413

-.002<.001.983

-.114.007.290

.007<.001.938


.034<.001.721

-.221.037.023

-.188.027.043

-.201.032.034


.228

.019

.106

.245

.017

.122

.345

.043

.010

.199

.010

.227


-.077.004.479

.004<.001.964

-.192.023.061

-.096.006.355


.110

.005

.411

.002<.001.991

-.028<.001.823

.224

.014

.165


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SummaryRepresentations

• Scores for treatment as cause, cure/control, and timeline were higher (worse) for numbness/tingling than for pain.

• Scores for consequences and emotional response were higher (worse) for pain than for numbness tingling.

Coping

• Managing symptom, planning, seeking emotional support, and expressing emotions were more frequently used for pain than for numbness/tingling,

• Acceptance was the most common strategy used for numbness/tingling.

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Conclusions

•In general, more coping strategies (both emotion- and problem-focused) were used for pain compared to numbness/tingling. •Representations explained more of the variance in coping than disease and personal characteristics. •Perceived control of the symptom was a significant predictor in three of the four models. However, the level of contribution of the other representations varied across models.

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Limitations

• Sample comes from members of an advocacy organization who may differ from the general population.

• Secondary analysis from a 10 year-old dataset.

• Scoring of DCI may not capture the full scope of coping efforts or represent “adaptive” coping.

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Implications• Acceptance, or the belief that nothing can be done

about the symptom, was pervasive for numbness/tingling.

• Assessment of symptom representations may help practitioners identify patients’ concerns about symptoms that may interfere with productive coping efforts.

• Interventions that include efforts to enhance patients’ sense of control over symptoms may improve patients’ coping and ultimately improve other important outcomes.

• Further research is needed to better understand how symptom representations, and their underlying meaning, influence the selection of different types of coping efforts.

Documents

Stephanie Gilbertson-White, PhD, RN Alexandra Bursic Paula Sherwood, PhD, RN, FAAN