**4. Statistical analyses**

Frequencies and relative frequencies were used to describe categorical variables. Continuous variables were described using the mean, median, and SD. Chi-square tests, Fisher's exact test, and independent sample *t* tests were used to examine bivariate associations. Unadjusted and adjusted odds ratios (ORs) and their 95% CIs were estimated using ordinal logistic regression analysis. Socio-demographic and health factors that were found to be associated with PDLO and PILT in the bivariate analysis at an alpha level of 0.20 were kept in the multivariate models. All analyses were performed using SAS software (version 9.1, SAS Institute, Inc., Cary, NC).

#### **5. Results**

268 Topics in Cancer Survivorship

accept a treatment recommendation not knowing what their baseline CALE is, how much the newly diagnosed cancer could reduce it, or how effectively treatment could minimize that reduction. Current over-treatment of LPC might be because patients do not understand

In this study we surveyed newly diagnosed patients about their anticipation of survival with and without treatment. By estimating their baseline CALE without considering the newly diagnosed cancer, we calculated their perceived decrease in longevity with observation

We surveyed patients who had been newly diagnosed with LPC (stages T1a to T2c) in the preceding 6 months, had met with their urologist after the diagnosis, were scheduled to receive treatment or observation, and had not yet been treated with surgery or radiation. Patients with dementia, or those who could not read, write, or understand English, were excluded. All patients were recruited from a large, private urology practice in Norfolk, Virginia. Staff at this practice systematically contacted patients newly diagnosed with LPC between March 2005 and November 2007 regarding their interest in participation in a selfadministered mailed survey. Two concomitant pretreatment self-administered surveys were used. The first survey asked patients about expectations of survival with and without treatment, co-morbid diseases, mood, social support, satisfaction with life, health, and education by physicians about treatment options. A list of health-related words in a closed envelope was mailed with the survey. Patients were requested to open the envelope and read these words on the telephone to a research assistant. This was done to estimate patient health literacy by using a brief version of the Rapid Estimation of Health Literacy in Medicine scale.14 Patients were given a \$10 stipend for completing this survey. A second pretreatment survey was a part of a longitudinal follow-up by urologists to evaluate generic HRQOL, prostate cancer related symptoms, and fear of cancer recurrence. The study

(PDLO), and their perceived increase in longevity with treatment (PILT) for the cancer.

methods were reviewed and approved by an Institutional Review Board.

The Charlson Comorbidity Index (CCI) is a validated measure of co-morbidity. We used a patient self-reported CCI scale that asked about the presence and severity of 12 chronic conditions; the Prostate Cancer Outcomes Study used this CCI version.15 Score categories

The NCCN practice guidelines had recommended, for the first time in 2007,8 that the health adjusted life expectancy of LPC patients can be estimated by weighting age-based life expectancy by 1.5 for patients in the highest health quartile, using no weighting for patients in the middle 2 health quartiles, and weighting by 0.5 for patients in the lowest health quartile. We used co-morbidity scores as surrogate markers of health status because comorbidity is the main determinant of life expectancy in older patients, 16 and the most important prognostic factor for patients with LPC who are <75 years old is the co-morbidity score. 17 We categorized patients into health quartiles by using their CCI score (0 disease score = highest health quartile; 1 or 2 disease score = middle 2 health quartiles; 3 or higher disease score = lowest health quartile). Our basis of equating a 1 or 2 disease score with the middle 2 health quartiles was that almost half (49%) of the 3173 patients newly diagnosed

the pros and cons of treatment.

**2. Methods** 

**3. Measures** 

are 0, 1, 2, and 3 or more diseases.

Surveys were mailed to 430 patients newly diagnosed with LPC, but 69 patients had already started treatment by the time the patients received the surveys, 3 patients never received the

Patients' Survival Expectations Before Localized Prostate Cancer Treatment by Treatment Status 271

Table 2 shows a comparison of patients who chose treatment or observation by cancer grade, PSA, life expectancy by age, and co-morbidity scores. Mean Gleason grade was 6.6. Table 2 also includes a comparison of these patient groups by SF-36 scores (Physical Component and Mental Component Scores), as well as the urinary, sexual, and bowel function scores of the 144 of 184 patients who had also returned the second pretreatment survey. Table 3 shows a comparison of patients who chose treatment or observation by CALE, anxiety and depression, function capacity, social support, and satisfaction. Mean CALE was 22.9 years. Table 4 shows the baseline CALE for the 184 patients and the responses of 170 of the 184 patients who had answered questions about their perceived life expectancy without treatment (Q1) and with treatment (Q2) of the cancer. Without treatment, perceived life expectancy was <5 years in 15.2%, 5 to 10 years in 48.8%, 11 to 19 years in 33.5% and 20 or more years in 2.4% of the patients. With treatment, it was <5 years in 0.6%, 5 to 10 years in 6.5%, 11 to 19 years in 30.0%, and 20 or more years in 62.9% of the patients. By contrast, baseline CALE was <5 years in 0.5%, 5 to 10 years in 2.2%, 11 to 19 years in 36.4%, and 20 or more years in 60.9%. A total of 170 patients had data on CALE, Q1, and Q2. As compared with CALE, 65 (38.2%) of these 170 patients expected their survival to decrease by 10 or more years without treatment. As compared with their perceived survival without treatment, 81 (47.6%) of 170 patients expected their survival to increase by 10 or more years with treatment. Of the 108 patients with a baseline CALE of >20 years, only 2 (1.9%) expected to live beyond 20 years without treatment whereas 84 (77.8%) expected to live beyond 20 years with treatment (data not shown). Neither of these perceptions was significantly related to whether the patients chose treatment or observation. However, to a statistically insignificant extent, patients who chose treatment were more likely than observation patients to expect a 10 or more years reduction in survival without treatment (50% vs. 33.3%, \_2 test; *P =* .26) and a 10 or more year increase in survival

with treatment (39.9% vs. 16.7%, Fisher's exact test; *P =*.13).

Overall Treatment Observation

Gleason Grade n = 184 n = 161 N = 23 2–4 0 (0.0) 0 (0.0) 0 (0.0) 5–6 103 (55.9) 84 (52.1) 19 (82.6) 7 62 (33.7) 60 (37.3) 2 (8.7)

Prostate-specic antigen n = 183 n = 161 n = 23 =<10 159 (86.9) 139 (86.3) 21 (91.3)

<10 4 (2.2) 2 (1.3) 2 (8.7) 10–20 104 (56.8) 86 (53.8) 18 (78.3)

Comorbidity score n = 184 n = 161 N = 23

Life expectancy by age

(years)

Factors (n [%]) (n [%]) (n [%]) P\*

8–10 19 (10.3) 17 (10.6) 2 (8.7) 0.02 Mean +/- SD 6.6 +/- 0.7 6.6 +/- 0.7 6.2 +/- 0.7 0.02

>10 24 (13.1) 22 (13.7) 2 (8.7) 0.74 Mean +/- SD 6.7 +/- 5.3 6.8 +/- 5.5 5.6 +/- 3.4 0.14

>=20 75 (40.9) 72 (45.0) 3 (13.0) 0.002\*

n = 183 n = 160 N = 23

surveys, and 2 patients were found to be ineligible to participate because their cancer was not localized to the prostate. Of the 356 remaining patients, 104 patients did not return the survey because they were "not interested" in participating and 68 patients who did not return the surveys did not give a reason for not participating or could not be contacted. One hundred eighty-four of 356 patients (survey response rate of 52%) completed and returned the first pretreatment survey; 23 of these 184 patients (12.5%) patients chose observation. Table 1 shows a demographic comparison of patients who chose treatment or observation. Mean patient age was 61.5 years, and most patients reported college education and a family income of >\$50,000.


\*Treatment patients had either surgery or radiotherapy.

†Observation patients had neither surgery nor radiotherapy.

‡Unless otherwise specified, statistical significance is for chi-square test (categorical variables) or independent samples t test (continuous variables).

§Fischer's exact test.

Table 1. Comparison of Socio-demographic Characteristics of Patients with Localized Prostate Cancer who Chose Treatment\* and Observation†

surveys, and 2 patients were found to be ineligible to participate because their cancer was not localized to the prostate. Of the 356 remaining patients, 104 patients did not return the survey because they were "not interested" in participating and 68 patients who did not return the surveys did not give a reason for not participating or could not be contacted. One hundred eighty-four of 356 patients (survey response rate of 52%) completed and returned the first pretreatment survey; 23 of these 184 patients (12.5%) patients chose observation. Table 1 shows a demographic comparison of patients who chose treatment or observation. Mean patient age was 61.5 years, and most patients reported college education and a family income of >\$50,000.

Overall Treatment Observation

Age (years) n = 184 n = 161 n = 23

<60 71 (38.6) 68 (42.2) 3 (13.0) 60–70 91 (49.5) 81 (50.3) 10 (43.5)

Race n = 184 n = 161 n = 23 African American 26 (14.1) 26 (16.2) 0 (0.0)

Education n = 180 n = 157 n = 23 <High school 7 (3.9) 7 (4.5) 0 (0.0) High school 65 (36.1) 56 (35.7) 9 (39.1)

Health literacy n = 173 n = 150 n = 23 Below 6th grade 1 (0.6) 1 (0.7) 0 (0.0) 6th-9th grade 16 (9.3) 15 (10.0) 1 (4.4)

Family income n = 179 n = 156 n = 23 Low (>\$50,000) 57 (31.8) 50 (32.0) 7 (30.4)

\*Treatment patients had either surgery or radiotherapy. †Observation patients had neither surgery nor radiotherapy.

Prostate Cancer who Chose Treatment\* and Observation†

independent samples t test (continuous variables).

§Fischer's exact test.

Characteristic (n [%]) (n [%]) (n [%]) P‡

>70 22 (11.9) 12 (7.5) 10 (43.5) <.0001 Mean +/- SD 61.5 +/- 7.9 60.6 +/- 7.6 68.2 +/- 5.9 <.0001

White 158 (85.9) 135 (83.9) 23 (100) .05§

College 108 (60.0) 94 (59.9) 14 (60.9) .58

>9th grade 156 (90.2) 134 (89.3) 22 (95.7) .63

High (=>\$50,000) 122 (68.2) 106 (67.9) 16 (69.6) .88

‡Unless otherwise specified, statistical significance is for chi-square test (categorical variables) or

Table 1. Comparison of Socio-demographic Characteristics of Patients with Localized

Table 2 shows a comparison of patients who chose treatment or observation by cancer grade, PSA, life expectancy by age, and co-morbidity scores. Mean Gleason grade was 6.6. Table 2 also includes a comparison of these patient groups by SF-36 scores (Physical Component and Mental Component Scores), as well as the urinary, sexual, and bowel function scores of the 144 of 184 patients who had also returned the second pretreatment survey. Table 3 shows a comparison of patients who chose treatment or observation by CALE, anxiety and depression, function capacity, social support, and satisfaction. Mean CALE was 22.9 years. Table 4 shows the baseline CALE for the 184 patients and the responses of 170 of the 184 patients who had answered questions about their perceived life expectancy without treatment (Q1) and with treatment (Q2) of the cancer. Without treatment, perceived life expectancy was <5 years in 15.2%, 5 to 10 years in 48.8%, 11 to 19 years in 33.5% and 20 or more years in 2.4% of the patients. With treatment, it was <5 years in 0.6%, 5 to 10 years in 6.5%, 11 to 19 years in 30.0%, and 20 or more years in 62.9% of the patients. By contrast, baseline CALE was <5 years in 0.5%, 5 to 10 years in 2.2%, 11 to 19 years in 36.4%, and 20 or more years in 60.9%. A total of 170 patients had data on CALE, Q1, and Q2. As compared with CALE, 65 (38.2%) of these 170 patients expected their survival to decrease by 10 or more years without treatment. As compared with their perceived survival without treatment, 81 (47.6%) of 170 patients expected their survival to increase by 10 or more years with treatment. Of the 108 patients with a baseline CALE of >20 years, only 2 (1.9%) expected to live beyond 20 years without treatment whereas 84 (77.8%) expected to live beyond 20 years with treatment (data not shown). Neither of these perceptions was significantly related to whether the patients chose treatment or observation. However, to a statistically insignificant extent, patients who chose treatment were more likely than observation patients to expect a 10 or more years reduction in survival without treatment (50% vs. 33.3%, \_2 test; *P =* .26) and a 10 or more year increase in survival with treatment (39.9% vs. 16.7%, Fisher's exact test; *P =*.13).


Patients' Survival Expectations Before Localized Prostate Cancer Treatment by Treatment Status 273

Clinical (15–21) 3 (1.6) 3 (1.9) 0 (0.0) .18 Mean +/- SD 5.1 +/- 3.5 5.4 +/- 3.5 2.8 +/- 2.9 .0008

Clinical (15–21) 1 (0.6) 1 (0.6) 0 (0.0) .83 Mean +/- SD 1.7 +/- 2.3 1.7 +/- 2.4 1.4 +/- 1.7 .49

Vigorous activities (>=6 METs) 163 (88.6) 145 (90.1) 18 (78.3) .19

75–100 143 (78.1) 125 (78.1) 18 (78.3) .98

Satised or lower 40 (22.5) 35 (22.4) 5 (22.7) .97 Mean +/- SD 6.0 +/- 0.9 5.9 +/- 0.9 6.1 +/- 1.0 .64

Satised or lower 93 (52.3) 84 (53.9) 9 (40.9) .26 Mean +/- SD 5.0 +/- 1.3 5.0 +/- 1.3 5.4 +/- 1.4 .19

Satised or lower 37 (20.8) 30 (19.2) 7 (31.8) .17 Mean +/- SD 6.1 +/- 0.9 6.1 +/- 0.9 5.9 +/- 1.1 .1

‡Unless otherwise specified, statistical significance is for chi-square test (categorical variables) or

Table 3. Distribution of Men by Prostate Cancer-Related and Health Characteristics

n = 178 n = 156 n = 22

None/normal (0–7) 145 (79.2) 123 (76.9) 22 (95.7) Mild anxiety (8–10) 23 (12.6) 23 (14.4) 0 (0.0) Moderate anxiety (11–14) 12 (6.6) 11 (6.9) 1 (4.4)

Depression score n = 178 n = 156 n = 22 None/normal (0–7) 172 (96.6) 150 (96.2) 22 (100) Mild depression (8–10) 4 (2.3) 4 (2.6) 0 (0.0) Moderate (11–14) 1 (0.6) 1 (0.6) 0 (0.0)

Functional capacity n = 184 n = 160 n = 23 Mild activities (<3 METs) 1 (0.5) 1 (0.6) 0 (0.0) Moderate activities (3–6 METs) 20 (10.9) 15 (9.3) 5 (21.7)

Social support n = 183 n = 160 n = 23 <50 7 (3.8) 6 (3.8) 1 (4.4) 50–75 33 (18.0) 29 (18.1) 4 (17.4)

Satisfaction with Life n = 178 n = 156 n = 22 Delighted or highly satised 138 (77.5) 121 (77.6) 17 (77.3)

Satisfaction with health n = 178 n = 156 n = 22 Delighted or highly satised 85 (47.8) 72 (46.1) 13 (59.1)

Delighted or highly satised 141 (79.2) 126 (80.8) 15 (68.2)

Satisfaction with education by physician in treatment choices

MET, metabolic equivalent.

\*Treatment patients had either surgery or radiotherapy. †Observation patients had neither surgery nor radiotherapy.

independent samples t test (continuous variables).


Table 2. Comparison of Patients who Chose Treatment and Observation by Prostate Cancer-Related and Health Factors




\*Treatment patients had either surgery or radiotherapy.

†Observation patients had neither surgery nor radiotherapy.

‡Unless otherwise specified, statistical significance is for chi-square test (categorical variables) or independent samples t test (continuous variables).

MET, metabolic equivalent.

272 Topics in Cancer Survivorship

n = 142 n = 134 n = 8

n = 142 n = 134 n = 8

>=3 8 (4.4) 5 (3.1) 3 (13.0) 0.16 Mean +/- SD 0.9 +/- 1.0 0.83 +/- 0.96 1.26 +/- 1.5 0.18

Mean +/- SD 54.5 +/- 7.6 54.5 +/- 7.2 52.6 +/- 12.3 0.66

Mean+/- SD 44.1 +/-6.8 43.9 +/- 6.9 46.4 +/- 4.5 0.29

Mean +/- SD 90.2 +/- 16.9 90.1 +/- 17.4 91.3 +/- 9.3 0.83

Mean +/- SD 88.8 +/- 12.5 88.5 +/- 12.8 92.9 +/- 4.5 0.03

Mean +/- SD 57.7 +/- 29.9 57.8 +/-30.4 55.4 +/- 23.8 0.82

Mean +/- SD 86.1 +/- 23.0 85.9 +/- 23.4 88.9 +/- 18.2 0.71

Mean +/- SD 65.8 +/- 36.8 65.4 +/- 36.8 72.2 +/- 38.4 0.59

Mean +/- SD 10.7 +/- 3.8 10.7 +/- 3.7 10.9 +/- 4.5 0.92

Overall Treatment Observation Characteristic (n [%] (n [%]\* \*\* (n [%]† \*\*\* P‡ \*

All ages 184 (100) 161 (100) 23 (100) <5 years 1 (0.5) 0 (0) 1 (4.3) 5–10 years 4 (2.2) 2 (1.2) 2 (8.7) 11–19 years 67 (36.4) 52 (32.3) 15 (65.2)

Anxiety score n = 183 n = 160 n = 23

Table 2. Comparison of Patients who Chose Treatment and Observation by Prostate Cancer-

>=20 years 112 (60.9) 107 (66.5) 5 (21.7) <.0001 Mean +/- SD 22.9 +/- 7.6 23.9 +/- 7.3 < .0001

Mean +/- SD 92.5 +/- 17.5 92.0 +/- 17.9 100 +/- 0.0 0.0001

0 74 (40.2) 66 (40.9) 8 (34.8) 1 75 (40.8) 67 (41.6) 8 (34.8) 2 27 (14.7) 23 (14.3) 4 (17.4)

Urinary n = 141 n = 132 n = 9

Bowel n = 142 n = 133 n = 9

Sexual n = 137 n = 128 n = 9

Urinary Bother n = 144 n = 135 n = 9

Bowel Bother n = 144 n = 135 n = 9

Sexual Bother n = 142 n = 133 n = 9

Fear of cancer recurrence n = 141 n = 133 n = 8

Short Form-36 subscales Physical component

Mental component

Prostate cancer index

Related and Health Factors

Comorbidity-adjusted life

expectancy

summary

summary

Table 3. Distribution of Men by Prostate Cancer-Related and Health Characteristics

Patients' Survival Expectations Before Localized Prostate Cancer Treatment by Treatment Status 275

Age 18 87 65 1.08 (1.04–1.13) 1.09 (0.99–1.19) CALE 18 87 65 0.93 (0.89–0.97) 1.02 (0.93–1.12) Anxiety Score 18 87 65 0.89 (0.82–0.98) 0.91 (0.81–1.02) Depression score 18 83 64 0.93 (0.82–1.05) 1.06 (0.89–1.26) Social Support 18 87 65 1.01 (0.99–1.03) 1.00 (0.98–1.02) \*PILT <=0 (reference group) indicates that CALE and self-reported survival expectation with treatment

95% CI) PILT =<0\* PILT = 1† PILT =>2‡ OR (95% CI)

Adjusted Effects (OR

Unadjusted Effects

†A (PILT) = 1 suggests that CALE exceeds self-reported survival expectation with treatment by one

about 10 years). All covariates in the ordinal logistic regression model are dened as continuous

PILT, perceived increase in longevity with treatment (categorized); CALE, comorbidity adjusted life

Table 6. Ordinal Logistic Regression Modeling for Perceived Increase in Longevity with

Prostate cancer is the most common solid cancer in men. Younger patients make up a fast growing population that is being screen-detected and treated for low-risk LPC.25 To our knowledge, this is the first study to report the perceptions of newly diagnosed patients about how the cancer or its treatment could affect their survival. The mean age of our patients (61.5 years) was similar to the range of 58 to 64 years of US patients currently undergoing radical prostatectomy.26 The mean Gleason grade was 6.6 in our patients, similar to other series in which almost half of screen-detected cancers were "insignificant."27 By choosing treatment, these low-risk patients had accepted the treatment side effects in exchange for longer anticipated survival. Our questions were designed to find how much longer these patients expected to live by choosing treatment. These expectations were evaluated after the patients had discussed their treatment options with their urologists. Despite their mean baseline CALE of 22.9 years, without treatment, 26 of 170 patients expected to live <5 years and only 4 expected to live >20 years; with treatment, only 1

What should these patients really be expecting? Nearly 86% of all patients diagnosed through PSA screening are not expected to die because of prostate cancer.28 The Connecticut Tumor Registry found that almost 20% of patients with Gleason grade 6 or higher who chose observation died as a result of LPC during a period of 20 years.29 However, all the Registry's patients had been clinically diagnosed; in contrast, patients diagnosed with screen-detected LPC are expected to have a longer survival because of a gain in lead time. Patients in another commonly cited natural history study30 were also not diagnosed by PSA screening. A review31 found that only one randomized, high-quality trial32 could find a

Treatment (PILT) among Men with Localized Prostate Cancer

expected to live <5 years and 107 patients expected to live >20 years.

‡A (PILT) >=2 suggests that CALE exceeds self-reported survival expectation with treatment by at least

are within the same range or CALE is less.

response category.

**6. Discussion** 

variables.

2 response categories (ie.,

expectancy; OR, odds ratio.


Data provided as n (%).

CALE, co-morbidity adjusted life expectancy; Q1, How long do you expect you will live without any treatment for prostate cancer?; Q2, How long do you expect you will live after the treatment of your choice for prostate cancer?

Table 4. Distribution of Men with Localized Prostate Cancer by Calculated Co-morbidity Adjusted Life Expectancy

Tables 5 and 6 present ordinal logistic regression models for PDLO and PILT. Age, CALE, depression, and anxiety scores predicted both PDLO and PILT. Furthermore, PSA level predicted PDLO, whereas social support predicted PILT.


\*A (PDLO) =<0 (reference group) indicates that CALE and self-reported survival expectation without treatment are within the same range or CALE is less.

†A (PDLO) = 1 suggests that CALE exceeds self-reported survival expectation without treatment by one response category.

‡A (PDLO) >=2 suggests that CALE exceeds self-reported survival expectation without treatment by at least 2 response categories (ie.,

about 10 years). All covariates in the ordinal logistic regression model are dened as continuous variables.

PDLO, perceived decrease in longevity with observation (categorized); PSA, prostate-specic antigen; CALE, comorbidity adjusted life expectancy; OR, odds ratio.

Table 5. Ordinal Logistic Regression Modeling for Perceived Decrease in Longevity with Observation (PDLO) among Men with Localized Prostate Cancer


\*PILT <=0 (reference group) indicates that CALE and self-reported survival expectation with treatment are within the same range or CALE is less.

†A (PILT) = 1 suggests that CALE exceeds self-reported survival expectation with treatment by one response category.

‡A (PILT) >=2 suggests that CALE exceeds self-reported survival expectation with treatment by at least 2 response categories (ie.,

about 10 years). All covariates in the ordinal logistic regression model are dened as continuous variables.

PILT, perceived increase in longevity with treatment (categorized); CALE, comorbidity adjusted life expectancy; OR, odds ratio.

Table 6. Ordinal Logistic Regression Modeling for Perceived Increase in Longevity with Treatment (PILT) among Men with Localized Prostate Cancer
