Care of long-term cancer survivors

Care of Long-Term Cancer Survivors

Physicians Seen by Medicare Enrollees Surviving Longer Than 5 Years

Lori A. Pollack, MD, MPH1; Walter Adamache, PhD2; A. Blythe Ryerson, MPH1;

Christie R. Eheman, PhD1; and Lisa C. Richardson, MD, MPH1

BACKGROUND: Studies have shown that follow-up care for cancer patients differs by physician specialty,

and that coordination between specialists and generalists results in better care. Little is known, however,

regarding which specialties of physicians provide care to long-term cancer survivors. METHODS: The

authors used Surveillance, Epidemiology, and End Results data from 1992 through 1997 that were linked to

1997-2003 Medicare data to identify persons diagnosed >5 years earlier with bladder, female breast, colo-

rectal, prostate, or uterine cancer. Physician specialties were assigned by combining Medicare data with

the American Medical Association Masterfile and the Unique Physician Identification Number Registry. The

percentage of long-term survivors who visited physicians of interest was determined by analyzing Medicare

outpatient claims submitted 6 to 12 years after initial diagnosis. RESULTS: Over the entire study period,

46% of female breast cancer survivors, 26% of colorectal cancer survivors, and 14% of prostate cancer sur-

vivors saw hematologists/oncologists. Radiation oncologists were seen by 11%, 2%, and 14% of breast, colo-

rectal, and prostate cancer survivors, respectively. Survivors also sought care from specialists related to

their cancer: 19% of breast cancer survivors had a cancer-coded visit with a surgeon, 26% of colorectal can-

cer survivors visited a gastroenterologist, and 68% of prostate cancer survivors visited a urologist. The

percentage of survivors who visited cancer and cancer-related physicians declined each year. In contrast,

nearly 75% of female breast, colorectal, and prostate cancer survivors saw primary care providers, and

these percentages did not decrease annually. CONCLUSIONS: The findings of the current study underscore

the need to include both primary care providers and cancer-related specialists in education and guidelines

regarding cancer survivorship. Cancer 2009;115:5284–95. VC 2009 American Cancer Society.

KEY WORDS: specialties, medical utilization, survivors, Surveillance, Epidemiology, and End Results

program, Medicare, breast neoplasms, colorectal neoplasms, prostatic neoplasms, urinary bladder

neoplasms, uterine neoplasms, aged.

Cancer survivors are a large and growing population in the United States. In 2006,>11 million peoplein the United States were living with diagnosed cancer, and 65% of them had been alive>5 years since the

Received: December 12, 2008; Revised: May 14, 2009; Accepted: May 15, 2009

Published online August 14, 2009 in Wiley InterScience (www.interscience.wiley.com)

DOI: 10.1002/cncr.24624, www.interscience.wiley.com

Corresponding author: Lori A. Pollack, MD, MPH, Epidemiology and Applied Research Branch, Division of Cancer Prevention and Control, Centers

for Disease Control and Prevention, 4770 Buford Hwy NE, Mailstop K55, Atlanta, GA 30341-3717; Fax: (770) 488-4639; [email protected]

1Division of Cancer Prevention and Control, Epidemiology and Applied Research Branch, Centers for Disease Control and Prevention, Atlanta,

Georgia; 2RTI International, Waltham, Massachusetts

This study was based on data from the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database. The interpretation and report-

ing of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the Applied Research Program, National Cancer

Institute; the Office of Research, Development, and Information, Centers for Medicare and Medicaid Services; Information Management Services; and

the SEER Program tumor registries in the creation of the SEER-Medicare database.

These findings and conclusions are solely the responsibility of the authors and do not necessarily represent the official position of the Centers for

Disease Control and Prevention, the Department of Health and Human Services, or the United States government.

5284 Cancer November 15, 2009

Original Article

cancer was diagnosed.1 Recognizing long-term conse-quences of cancer and its treatment, clinicians,researchers, and advocates have directed attention to-ward identifying and minimizing the chronic effectsand health risks that cancer survivors may experi-ence.2,3 Four national reports concerning medical, psy-chosocial, and public health issues related to cancersurvivorship have been released since 2004 and statedthat survivors need long-term follow-up care fromknowledgeable physicians.4-7 Many physicians provid-ing this follow-up care may need additional training inhow best to prevent complications and promote healthamong their patients who have survived cancer.

Previous studies have shown that follow-up care for

cancer survivors treated by oncology specialists is different

from care for survivors treated by generalists, and that

coordination between specialists and generalists resulted

in better patient care.8,9 For example, among women

diagnosed with uterine cancer at least 5 years earlier, those

who visited obstetricians/gynecologists or gynecologic

oncologists were more likely to receive preventive services,

including a mammogram and colorectal cancer screening,

than were those who saw an oncologist or a primary care

physician.10 Mammography and colonoscopy use was

found to be higher among long-term colorectal cancer

survivors who visited oncologists than among those who

visited primary care providers.11,12 Among women with

breast cancer, those who continued to see oncologists for

3 years after their diagnosis were found to be more likely to

receive mammography than those who did not, but they were

also found more likely to receive surveillance tests considered

inappropriate according to current recommendations.9

The care that generalists provide to cancer survivors is

important, because a recent projection estimated that by

2020 the annual demand for oncology visits will surpass the

capacity of trained oncologists by 9.4 to 15.0 million vis-

its.13 Thus, the future supply of oncologists might be insuf-

ficient to provide continued care to all cancer survivors.

Physicians in specialties other than oncology will likely have

increased responsibility in the care of long-term survivors.

However, the roles of generalists and specialists in the coor-

dinated care of cancer survivors remain unclear.12

Patterns of care for cancer survivors have been studied

for time periods up to the first few years after treat-

ment.9,14-16 However, to our knowledge, little is known

regarding what specialties of physicians provide care to

long-term cancer survivors after they reach their milestone

of 5-year survival. The purpose of the current study was to

characterize the specialties of providers who care for Medi-

care beneficiaries who survive more than 5 years after their

initial cancer diagnosis. We chose to focus on physician uti-

lization during this later time period because of the paucity

of literature that describes care among long-term survivors

beyond 5 years from diagnosis. We determined the percen-

tages of long-term survivors who visited cancer specialists,

specialists in fields related to their cancer, and primary care

physicians. We also examined the relation of patient socio-

demographic factors and cancer site to the continuation of

care from cancer specialists. Our rationale behind this work

was that recognizing the physicians who care for long-term

survivors is a first step toward improving the lifetime care

of these men and women.

MATERIALS AND METHODS

Data

To identify long-term cancer survivors and the physicians

providing their care, we used linked data from the Surveil-

lance, Epidemiology, and End Results (SEER) program

and Medicare.17 This data set links clinical and demo-

graphic information including diagnosis date, cancer stage,

patient’s age at diagnosis, and patient’s race/ethnicity from

11 population-based SEER cancer registries with hospital,

physician, outpatient, home health, and hospice Medicare

claims for people with cancer who are Medicare eligible. In

a previous study, Medicare data were successfully linked to

94% of SEER registry patients aged �65 years.18 The

Medicare data set we used was based on claims filed from

January 1, 1997 through December 31, 2003, and was

linked to SEER data for cancer cases diagnosed from Janu-

ary 1, 1992 through December 31, 1997. We also obtained

data from the Unique Physician Identification Number

(UPIN) Registry and the American Medical Association

(AMA) Physician Masterfile to determine the specialties of

physicians who were providing care.19,20

Study Population

We used SEER data to identify 200,561 patients with a

first diagnosis of invasive female breast, colorectal, pros-

tate, uterine, or bladder cancer at age �60 years during

Physicians Seen by Long-Term Survivors/Pollack et al

Cancer November 15, 2009 5285

the period 1992 through 1997 who had survived at least 5

years (hereafter referred to as long-term survivors). We

excluded 36,809 long-term survivors with a history of

multiple cancers or a known cancer recurrence, because

they likely would have received more frequent follow-up

care from oncology physicians than survivors without a

new or recurrent cancer. The final cohort was comprised

of 104,895 long-term survivors who were continuously

enrolled in Medicare. We constructed the cohort by using

Medicare eligibility information, to exclude those who 1)

were enrolled in Medicare managed care plan at any time

during 1997 through 2003 (n¼ 44,497); 2) were enrolled

in Medicare before reaching age 65 years (n ¼ 9372); 3)

were not enrolled in both Medicare Part A and Part B (n

¼ 5913); or 4) were not enrolled in Medicare when their

61st month of survival began (n ¼ 2924). The final

cohort was slightly larger than 200,561 minus the sum of

all excluded long-term survivors, because some survivors

met multiple exclusion criteria.

Patient and Tumor Characteristics

Sociodemographic variables were sex, age at diagnosis,

race, and Hispanic ethnicity. We identified low-income

survivors as those who had standard Medicaid coverage or

were receiving state assistance for payment of Medicare

premiums, deductibles, and coinsurance for at least 1

month during the study period of 1997 through 2003

(collectively known as ‘‘dual eligibles’’). Rural-urban com-

muting area codes, which take into account population

density, urbanization, and commuting flows, were used to

indicate the survivors’ residence at the time of diagnosis

(metropolitan area, large town, small town, or rural

area).21 Cancer stage at diagnosis was classified according

to SEER summary staging.22 For prostate cancer, the

localized and regional stages were combined in accordance

with current reporting standards.21 We assessed comor-

bidity using Klabunde’s modification of the Charlson

comorbidity weights on outpatient diagnosis data on

Medicare claims from the 6th survival year.23,24

Physician Specialty and Visits

Because previous studies have shown that Medicare claims

often do not identify cancer specialists,25,26 we combined

3 data sources (Medicare claims, the UPIN Registry, and

the AMA Masterfile) to determine the specialty of physi-

cians who treated long-term survivors included in the

study cohort. We considered physicians to be cancer spe-

cialists if they were so identified either in the AMA

Masterfile or in both the Medicare claims and the UPIN

Registry. If the identified specialties were discordant, the

specialty classification in the AMA Masterfile took prece-

dence, because the AMA does more active confirmation

of specialty identification. If the cancer specialty was iden-

tified only in the Medicare claims or only in the UPIN

Registry but not in the AMAMasterfile, the physician was

considered misclassified, because the cancer specialization

was identified in only 1 of the 3 available sources. We fur-

ther restricted the identified cancer specialists to physi-

cians most likely to have made clinical decisions regarding

the care of cancer patients or who directly administered

that care. Accordingly, we considered only physicians

having Medicare claims with a radiation therapy Current

Procedural Terminology (CPT) code (77000-77799) to

be radiation oncologists. We also decided that physicians

who were identified as specializing in pathology, blood

banking/transfusion, dermatology, or anesthesiology

likely had a supportive role in the oncological care of

patients and did not consider them to be cancer special-

ists. Further discussion of the rules we used to determine

whether to consider physicians to be cancer specialists and

the effect of these rules on classifying physician specialties

is detailed in a separate paper.27

We categorized cancer specialists as practicing

gynecologic oncology, hematology/oncology (physicians

identified as hematologists, oncologists, or both), muscu-

loskeletal oncology, radiation oncology, surgical oncol-

ogy, or multiple cancer specialties.

We defined cancer-related specialties differently for

each study cancer based on whether the care provided in

that specialty directly related to the cancer of interest.

Thus, we considered the following physicians to be can-

cer-related specialists: 1) urologists for bladder or prostate

cancer patients; 2) colorectal surgeons and gastroenterolo-

gists for colorectal cancer patients; 3) obstetrician/gyne-

cologists for uterine cancer patients; and 4) general

surgeons for female breast, colorectal, and uterine cancer

patients who had an evaluation and management visit for

which a cancer-related diagnosis was coded on at least 1 of

their Medicare outpatient claims (3-character Interna-

tional Classification of Diseases-9 diagnosis codes 140

through 239, V10, and V76).

Original Article


Primary care providers included family practice,

general medicine, internal medicine, geriatric medicine,

and preventive medicine physicians.

Because physicians could have >1 specialty indi-

cated in each of the data sources, we hierarchically

assigned 1 specialty to each physician in the following

order of precedence: cancer specialist, cancer-related spe-

cialist, other surgical specialist, other medical specialist,

primary care provider, and all other. Except for the cancer

and cancer-related specialties, the hierarchy of specialties

was based on the number of years of training required.

Visits were defined as an office or other out-

patient evaluation and management claim (CPT

codes 99201-99205 and 99211-99215) for care that

patients received at least 5 years after their initial diagnosis

of cancer.

Table 1. Characteristics of Long-Term Cancer Survivors by Type of Cancer

Characteristic Type of Cancer

Total(n5104,895), %

Female Breast(n526,972), %

Colorectal(n516,671), %

Bladder(n57429), %

Prostate(n547,954), %

Uterine(n55869), %

Female 42.4 100 56.4 29.6 — 100

Age at diagnosis, y60-64 17.2 19.2 14.0 15.4 16.9 21.7

65-69 24.8 23.0 20.5 23.1 27.5 24.9

70-74 25.5 23.1 22.9 24.9 28.0 24.2

75-79 18.4 18.2 20.1 19.5 17.8 17.6

‡80 14.2 16.5 22.5 17.2 9.9 11.7

RaceWhite 86.9 89.1 86.1 92.5 84.3 93.1

Black 6.7 5.0 5.8 2.6 9.0 3.1

Other 6.2 5.7 7.9 4.6 6.5 3.6

Unknown 0.2 0.2 0.3 0.3 0.2 0.2

EthnicityNon-Hispanic 95.4 96.1 96.0 96.7 94.4 96.3

Hispanic 3.6 3.4 3.6 2.5 3.9 3.3

Unknown 1.1 0.6 0.4 0.8 1.7 0.5

Low income 11.8 14.6 16.1 11.5 8.7 12.2

Residence at timeof diagnosisMetropolitan area 85.3 85.4 83.7 84.5 85.9 85.2

Large town 5.8 5.7 6.4 7.1 5.5 5.5

Small town 7.3 7.2 8.2 7.0 7.2 7.4

Rural area 1.6 1.7 1.7 1.4 1.5 1.9

SEER summarystage at diagnosisLocalized 39.0 75.2 55.4 86.1 — 85.8

Regional 13.2 21.8 39.5 10.5 — 10.0

Distant 1.8 1.2 2.6 0.3 2.1 2.1

Localized/regional

(prostate only)

40.5 — — — 88.6 —

Unstaged 5.5 1.8 2.6 3.2 9.4 2.1

Charlson Indexat 6th survival y0 71.4 72.7 69.3 65.9 71.9 73.4

1-2 20.0 19.7 20.9 22.7 19.6 19.4

‡3 8.6 7.6 9.8 11.4 8.5 7.2

SEER indicates Surveillance, Epidemiology, and End Results program.



Statistical Analysis

We first described the sociodemographic characteristics,

cancer stage at diagnosis, and number of comorbidities of

the long-term cancer survivors, both overall and by type

of cancer. We then calculated the percentage of long-term

survivors who had at least 1 visit with a physician of inter-

est at any time during the study period (6th to 12th sur-

vival year) for all study cancers, and then annually by years

since diagnosis for breast, colorectal, and prostate cancer.

The denominators included men and women who were

alive at any point during the specified time since diagno-

sis. The denominators for survival years further from

diagnosis included fewer survivors because of death, cen-

soring, or transition to institutionalized care. We used

chi-square tests to determine whether the percentage of

survivors who had at least 1 office visit to various special-

ists differed significantly by patient characteristics. The

differences among percentages by each characteristic were

judged to be statistically significant if the P value was

<.001. We also described the mean number of visits each

year to physician specialty groupings for survivors in the

6th to 12th year from their diagnosis.

RESULTS

The mean age of the 104,895 long-term cancer survivors

was 71.7 years. Approximately 86.9% were white and

3.6% were Hispanic, 11.8% were considered to be ‘‘low

income’’ for at least 1 month during the study period, and

85.3% lived in a metropolitan area at the time of diagnosis

(Table 1). The most common types of cancer among

them were prostate cancer (n ¼ 47,954), female breast

cancer (n ¼ 26,972), and colorectal cancer (n ¼ 16,671).

As would be expected in a population of long-term cancer

survivors, most cancers were diagnosed at the localized

and regional stage. Most survivors had either no (71.4%)

or no more than 2 comorbidities (20.0%) during the 6th

year after their cancer diagnosis.

During the 6th to 12th year since their cancer diag-

nosis, of the 94.2% of the survivors who had an office eval-

uation and management visit with a physician of interest,

32.9% visited a cancer specialist, mainly a hematologist-

oncologist (23.6%) or a radiation oncologist (9.9%) (Table

2). Visits to hematologists/oncologists were more common

among survivors with breast (45.6%) and colorectal

(26.3%) cancer than among those with prostate, bladder,

Table 2. Percentage of Long-Term Cancer Survivors Who Had at Least One Visit With a Physician of Interest During the6th to 12th Year Since Diagnosis by Specialty

PhysicianCategory*

Type of Cancer

Total(n598,803), %

Female Breast(n525,543), %

Colorectal(n515,343), %

Bladder(n56954), %

Prostate(n545,382), %

Uterine(n55581), %

Cancer specialisty 32.9 54.0 28.4 13.4 26.6 23.9

Hematologist/oncologist 23.6 45.6 26.3 11.1 13.9 10.1

Radiation oncologist 9.9 11.3 2.2 1.8 13.6 5.5

Surgical oncologist 1.9 3.5 1.0 1.2 1.6 0.8

Gynecologic oncologist 0.8 0.9 0.2 0.3 0.0 8.0

Cancer-related specialist 48.4 19.9 36.6 62.2 67.8 36.8

General surgeon

(cancer-coded claim)

6.4 19.3 7.9 — — 2.6

Urologist 35.5 — — 62.1 67.8 —

Colorectal surgeon 0.9 — 6.1 — — —

Gastroenterologist 4.0 — 25.9 — — —

Obstetrician-gynecologist 2.0 — — — — 34.9

Primary care provider 74.2 76.0 72.7 73.8 73.5 76.8

Medical specialist 72.8 70.7 65.9 75.1 76.0 72.7

*Hematologist/oncologist refers to physicians identified as a hematologist, oncologist, or both. Primary care provider refers to family practice, internal medi-

cine, or generalist physicians. Medical specialists include all subspecialties of medicine with the exception of gastroenterologists, who are considered to be

cancer-related specialists for colorectal cancer survivors.

yMusculoskeletal oncologists and physicians with multiple oncology specialties were not shown, because they were seen by <1% of cancer survivors.

Original Article


FIGURE 1. Percentage of long-term cancer survivors who had at least 1 visit annually with a physician of interest is shown by year since di-

agnosis in (a) breast cancer long-term survivors, (b) colorectal cancer long-term survivors, and (c) prostate cancer long-term survivors.

Table 3. Percentage of Long-Term Cancer Survivors Who Visited Selected Categories of Physicians During the 6th to 12thYear Since Their Cancer Diagnosis by Demographic and Diagnostic Characteristics

Characteristic Physician Specialty*

No. of Long-TermCancer SurvivorsWho Visited aPhysician

CancerSpecialist, %

Cancer-RelatedSpecialist, %

Primary CarePhysician, %

NoncancerMedicalSpecialist, %

All 98,799 32.9 48.4 74.2 72.8

SexyMen 56,968 25.9 64.1 73.2 75.2

Women 41,831 42.4 27.1 75.6 69.7

Age at diagnosis, yy60-64 17,277 38.2 49.8 76.0 72.9

65-69 24,994 36.5 52.9 74.9 75.3

70-74 25,532 34.4 51.2 74.8 75.3

75-79 18,093 30.4 46.7 73.7 72.7

‡80 12,903 19.4 34.9 70.1 63.2

RacezWhite 86,296 32.8 47.9 74.5 73.8

Black 6228 33.7 52.6 72.3 63.0

Other 6095 33.3 51.9 72.7 69.5

Unknown 180 25.6 41.7 75.0 68.9

Hispanic originyNon-Hispanic 94,311 33.1 48.4 74.6 73.0

Hispanic 3442 31.2 46.8 67.7 67.0

Unknown 1046 23.2 57.1 64.6 78.6

Low incomeyNo 88,198 33.5 49.9 74.5 73.7

Yes 10,601 27.4 36.7 71.7 65.2

Residence at time ofcancer diagnosisyMetropolitan area 84,188 33.8 49.2 73.6 74.4

Large town 5771 28.1 48.0 76.9 65.3

Small town 7267 26.7 41.5 78.2 63.2

Rural area 1573 28.6 39.5 78.8 61.9

SEER summary stageat diagnosisyLocalized 38,636 32.6 32.8 76.0 71.5

Regional 12,852 53.5 30.2 72.2 66.9

Distant 1685 54.5 44.5 66.2 62.2

Localized/regional (prostate) 40,292 26.3 67.7 73.6 76.3

Charlson comorbidity indexy0 comorbidities 70,548 33.9 49.0 74.4 71.5

1 comorbidity 19,919 31.0 48.0 75.4 75.2

‡2 comorbidities 8332 29.0 45.2 70.4 78.7

SEER indicates Surveillance, Epidemiology, and End Results program.

*Cancer specialists were defined as gynecologic oncologists, hematologists, oncologists, musculoskeletal oncologists, radiation oncologists, or surgical oncol-

ogists. Cancer-related specialists were defined as urologists for patients with bladder or prostate cancer; colorectal surgeons and gastroenterologists for

patients with colorectal cancer; obstetrician/gynecologists for patients with uterine cancer; and general surgeons for patients with cancers of the female

breast, colorectum, and uterus, as long as the survivors had at least 1 cancer-coded claim. Primary care providers were defined as family practice, internal

medicine, or generalist physicians. Medical specialists were defined as practitioners of all other subspecialties of medicine except gastroenterology, which

was considered to be a cancer-related specialty for colorectal cancer survivors.

yDifferences among percentages by characteristic had a significance level of P < .001 for each physician specialty grouping.

zDifferences in percentages by race were significant (P < .001) for visits to cancer-related specialists, primary care physicians, and noncancer medical special-

ists, but not for cancer specialists (P > .07).

Original Article


or uterine cancer (13.9%, 11.1%, and 10.1%, respectively).

A radiation oncologist was seen at least once by 13.6% of

prostate cancer survivors and 11.3% of breast cancer survi-

vors. Surgical and gynecologic oncologists were seen by

3.5% or fewer survivors of all categories, except for uterine

cancer survivors, of whom 8.0% had at least 1 visit to a

gynecologic oncologist. Overall, 48.4% of long-term survi-

vors had a claim for visiting a cancer-related specialist. The

type of specialist seen most frequently varied by cancer

type; 19.3% of breast cancer survivors saw a general sur-

geon who coded for a cancer-related visit, 25.9% of colo-

rectal cancer survivors saw a gastroenterologist, 62.1% of

bladder and 67.8% of prostate cancer survivors saw a urol-

ogist, and 34.9% of uterine cancer survivors saw an obste-

trician/gynecologist. Overall, the percentages of long-term

survivors who saw a primary care physician or a noncancer-

related medical specialist were 74.2% and 72.8%, respec-

tively; whereas the percentages who saw cancer or cancer-

related specialists were 32.9% and 48.4%.

Figure 1 shows, by physician specialty and years since

diagnosis, the percentages of long-term breast, prostate,

and colorectal cancer survivors who had a physician evalua-

tion and management visit during Years 6 to 12 after diag-

nosis. Overall, 56.8% to 64.9% of these survivors saw a

primary care physician, and 49.2% to 61.8% saw a non–

cancer-related medical specialist at least once in any given

year; these percentages did not decline until Year 12.

Among women with breast cancer, 41.3% visited a hema-

tologist-oncologist during their 6th year of survival; how-

ever, this annual percentage had fallen to 20.2% by the

12th year. The percentages of long-term colorectal cancer

survivors who saw a hematologist-oncologist were 23.8%

in Year 6, declining to 10.7% in Year 12; for prostate survi-

vors, the percentages in all years from diagnosis were

<9.0%. The percentage of prostate cancer survivors who

visited a urologist fell from 59.1% during the 6th year to

39.2% during the 12th year since diagnosis. The percent-

age of survivors who visited radiation oncologists ranged

from 10.7% at Year 6 to 3.4% at Year 12 among those

with prostate cancer, from 9.2% to 2.1% among those

with breast cancer, and from 1.4% to 0.4% among those

with colorectal cancer. The percentage of colorectal cancer

patients who visited a gastroenterologist fell from 15.1% in

Year 6 to 9.6% in Year 12.

As shown in Table 3, the percentage of survivors with

claims for cancer specialist visits was higher among women,

and the percentage with claims for cancer-related specialist

visits was higher among men. This finding is because

women with a history of breast cancer sought care from

oncologists who were classified as cancer specialists; whereas

men with prostate cancer sought care from urologists who

were classified as cancer-related specialists. Overall, the

FIGURE 2. The mean number of outpatient visits per year among long-term cancer survivors is shown by total and by type of

physician. *Cancer specialists were defined as gynecologic oncologists, hematologists, oncologists, musculoskeletal oncologists,

radiation oncologists, or surgical oncologists.



percentages of long-term cancer survivors who saw cancer

specialists and cancer-related specialists declined by age

group. The percentages with visits to primary care pro-

viders and other medical specialists did not differ as much

by age. The percentage of survivors who saw cancer-related

specialists was higher among blacks than among whites;

however, no differences were found in the percentages who

sought cancer specialists by race. Among Hispanic survi-

vors, the percentages who saw primary care and other med-

ical specialists 5 years past a cancer diagnosis were lower

than for non-Hispanic survivors. Low income survivors

were less likely than those not needing state assistance with

Medicare coverage to have visited physicians in every cate-

gory. Residents of metropolitan areas at the time of diagno-

sis were more likely than large town, small town, and rural

residents to have visited cancer- and non–cancer-related

specialists. Survivors whose cancer was diagnosed at a dis-

tant stage were more likely to have visited cancer specialists

than were those whose cancer was diagnosed at the local-

ized stage. Survivors with �2 comorbid conditions were

less likely to have visited cancer physicians, but more likely

to have visited noncancer specialists than were those with

fewer comorbid conditions.

As shown in Figure 2, the average annual number of

all evaluation and management visits to physicians for all

study cancers combined declined from 9.1 in the 6th year

to 7.9 in the 11th year of survival, whereas the average

number of visits per year to primary care specialists and

noncancer specialists remained fairly stable until the last

study year. The decrease in the number of visits to cancer

and cancer-related specialists impacted the overall

decrease in evaluation and management visits by year.

Because men with prostate cancer comprised 46% of our

study cancers, we also did a separate analysis of their visits

(data not shown). The mean number of evaluation and

management visits among prostate cancer survivors was

higher each year compared with the overall results. This

finding was because of a higher mean number of visits to

cancer-related specialists, mainly urologists (1.6 visits in

Year 6, 1.4 visits in Years 7-9, and 0.7 visits in Year 12).

The mean number of visits to primary care providers was

the same each year for all survivors and men with prostate

cancer. Visits to cancer specialists for prostate cancer sur-

vivors were fewer than the average number of visits among

all survivors in the earlier years since diagnosis (0.8 visits

in Years 6, 7, and 8), but similar in the remaining years.

DISCUSSION

Overall, we found that only approximately one-third of

cancer survivors continued to seek care from physicians

whose specialties were related to their original cancer at any

point after reaching the milestone of 5-year survival. Breast

cancer survivors continued to visit with hematologists/

oncologists and other cancer specialists more than any other

group of long-term cancer survivors, and >67% of long-

term prostate cancer survivors continued visiting urologists.

Much higher percentages of survivors received care from

primary care providers and non–cancer-related medical spe-

cialists than from cancer and cancer-related specialists. Fur-

thermore, whereas the percentage of long-term cancer

survivors who received care each year from cancer and can-

cer-related specialists decreased each year out from the 6th

survival year, the percentage who visited primary care pro-

viders and non–cancer-related medical specialists did not.

We also found that age, Hispanic ethnicity, rural

residence, low income, and multiple comorbidities were

associated with a decreased likelihood of cancer survivors

receiving continued care from cancer specialists. Possible

explanations for this finding include assumption of care

by primary care providers, less access to specialized care,

and competing health demands among survivors in these

categories.

In the future, we would like to further explore how

the type of physician seen by long-term cancer survivors

relates to outcomes, including the use of preventive care,

the incidence of late effects, the incidence of secondary and

recurrent cancers, and ultimately, survival. Results from a

previous study indicated no differences in the rate of cancer

recurrence between survivors treated by family physicians

and those treated by oncologists.28 Similar results from

additional studies would help reassure physicians and survi-

vors that noncancer specialists can provide follow-up care to

cancer survivors without compromising the quality of care.

The findings of the current study highlight that pri-

mary care providers have a central role in providing care

for cancer survivors, especially in years further out from

diagnosis. This trend was observed by Snyder et al, who

found that, during the first year after completion of active

cancer treatment, cancer patients were being seen by both

oncologists and primary care providers.14 Then, between

the 1st and 5th year after cancer diagnosis, the percentage

of survivors who visited oncologists decreased, whereas

the percentage who saw only primary care providers

Original Article


increased.15 We showed that this trend continued from

the 6th to the 11th year of cancer survival.

The implication of the findings of this study is that

physicians who care for long-term survivors need up-to-

date guidance concerning appropriate follow-up and pre-

ventive measures, especially as the evidence base for what

constitutes appropriate long-term surveillance of cancer

survivors expands. The 2006 Institute of Medicine report,

From Cancer Patient to Cancer Survivor: Lost in Transition,

detailed many physical, psychosocial, and practical issues

confronting long-term survivors and suggested

approaches to improve care, such as cancer treatment

summaries to facilitate better coordination of care for sur-

vivors.5 Related to this Institute of Medicine report, the

American Society of Clinical Oncologists has developed

resources, such as treatment summary templates, to help

with the transition to survivorship once active treatment is

completed.29 It is unknown whether and to what extent

physicians providing care to long-term survivors, particu-

larly primary care providers and urologists, are aware of

and use these resources. Our findings could be useful to

direct efforts to improve survivorship care toward the

most relevant physician specialty groups.

A major strength of the current study was that we

combined data from 3 sources to more accurately classify

the specialties of physicians treating cancer survivors. To

our knowledge, no previous study has used this amount of

combined data to limit potential misclassification. The

SEER-Medicare data, which capture 17% of all cancer

patients in the United States, are population-based, valid,

and representative of different areas across the county. In

addition, we characterize physicians seen by cancer

patients whose cancer had been diagnosed 6 to 12 years

previously, a longer cancer survival period than most stud-

ies among cancer survivors. In addition, because we

focused on cancers with high 5-year survival rates, our

results reflect the physicians seen by of a majority of can-

cer survivors. Among all US cancer survivors, 66% had a

type of cancer included in our study.1

The current study also had several limitations. One

limitation was that despite our best attempt to character-

ize the specialty of physicians treating cancer survivors

by combining multiple data sources, there is no way to

ascertain the actual specialty of individual physicians.

Many subspecialists practice general medicine and, con-

versely, generalists may focus on a particular clinical area

without formal fellowship training.25,30 In addition, dis-

tinguishing between general and oncologic surgeons or

between gynecologists and gynecologic oncologists has

been shown to be especially difficult, because any of

these specialists can choose to focus exclusively on cancer

patients or not.31 Furthermore, specialty data from

Medicare claims and the UPIN Registry rely exclusively

on self-reports, and although AMA Masterfile data on

physicians’ specialties are derived in part from specialty

boards, they are also based in part on physician surveys.

Thus, the percentages reported may not accurately

reflect the particular specialists seen, and we cannot

assess whether there was potential under- or overestima-

tion based on the available data. A second study limita-

tion is that 46% of the study cohort had prostate cancer.

Therefore, the overall results presented are heavily influ-

enced by the findings for men diagnosed with prostate

cancer. The role of urologists, who are classified as can-

cer-related specialists in caring for prostate cancer survi-

vors, accounts for the high percentages of overall, male,

and nonwhite survivors who visited with cancer-related

specialists. A third limitation is that although we

excluded survivors with a known secondary cancer from

our study because they would be more likely to seek care

from a cancer specialist, SEER-Medicare data do not

identify all survivors in whom recurrence or metastasis

has occurred.32 Therefore, some of the long-term survi-

vors in our study who visited cancer specialists and

cancer-related specialists may have been receiving care

related to a recurrence. In addition, we included visits

near the end of life, a period known for increased health-

care utilization and not reflective of routine care.33,34 A

fourth limitation is that, in Year 12 of this study, the

number and percentages of long-term survivors who had

visits were less than expected. Our results may have been

affected in this latter year by attrition because of death,

data censoring, and transitioning to institutional or hos-

pice care, which does not generate ‘‘allowed’’ Medicare

evaluation and management visits. Finally, Medicare

claims-based data represent only Americans aged �65

years who are not enrolled in Medicare managed care

organizations and only capture services billed, which

may not reflect actual care.

In conclusion, long-term cancer survivors have more

contact with primary care physicians and other non–

cancer-related providers than with cancer specialists or



cancer-related specialists. As a result, non–cancer-related

providers need to understand their patients’ cancer history

and treatment as well as the potential late effects of cancer

and how to optimize the health and well-being of cancer

survivors. Findings from this study provide necessary

background information for subsequent studies of the

outcomes of long-term cancer survivors by the specialty of

their physicians. Efforts to improve the health and well-

being of long-term cancer survivors such as the develop-

ment and use of personalized survivorship care plans

should be fully supported and disseminated through pro-

fessional education to physicians of all specialties, espe-

cially primary care providers and urologists. We hope that

our results will encourage partnerships with appropriate

medical specialty organizations to develop and dissemi-

nate education and interventions designed to improve the

care of long-term cancer survivors.

Conflict of Interest Disclosures

Supported by contract 200-2002-00,575 from the Centers forDisease Control and Prevention to RTI International.

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Care of long-term cancer survivors

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