Melanoma surveillance in the United States: Overview of methods

Melanoma surveillance in the United States: Overview of methods Meg Watson, MPH,a Christopher J. Johnson, MPH,b Vivien W. Chen, PhD,c Cheryll C. Thomas, MSPH,a Hannah K. Weir, PhD,a Recinda Sherman, MPH,d Myles Cockburn, PhD,e Jeannette Jackson-Thompson, MSPH, PhD,f and Mona Saraiya, MD, MPHa Atlanta, Georgia; Boise, Idaho; New Orleans, Louisiana; Miami, Florida; Los Angeles, California; and Columbia, Missouri CME INSTRUCTIONS Please note this is one article that is part of a 16-article CME supplement. CME credit should only be claimed after reading the entire supplement which can be accessed via the ‘‘Melanoma Supplement’’ tab under the ‘‘Collections By Type’’ pulldown menu on http://www.jaad.org. This journal supplement is a CME activity (enduring material) co-sponsored by the American Academy of Dermatology and the Centers for Disease Control and Prevention and is made up of four phases: 1. Reading of the CME Information (delineated below) 2. Reading all the articles in this supplement 3. Achievement of a 70% or higher on the online Post Test 4. Completion of the CME Evaluation

CME INFORMATION AND DISCLOSURES Statement of Need: Healthcare providers continue to underreport melanoma even though cancer reporting requirements mandate such reporting. Additionally, providers may be unaware of recent trends and descriptive epidemiology regarding melanoma which includes the fact that nonwhites have a higher mortality rate from melanoma than do whites. Target Audience: Dermatologists, dermatopathologists, general physicians, and public health professionals. Accreditation The American Academy of Dermatology is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. AMA PRA Credit Designation The American Academy of Dermatology designates this enduring material for a maximum of 7 AMA PRA Category 1 CreditsÔ. Physicians should claim only the credit commensurate with the extent of their participation in the activity. AAD Recognized Credit This CME activity is recognized by the American Academy of Dermatology for 7 AAD Recognized Credits and may be used toward the American Academy of Dermatology’s Continuing Medical Education Award. Disclaimer: The American Academy of Dermatology is not responsible for statements made by the author(s). Statement or opinions expressed in this activity reflect the views of the author(s) and do not reflect the official policy of the American Academy of Dermatology. The information provided in this CME activity is for continuing education purposes only and is not meant to substitute for independent medical judgment of a health provider relative to the diagnostic, management and treatment options of a specific patient’s medical condition. Disclosures Editors The editors involved with this CME activity and all content validation/peer reviewers of the CME activity have reported no relevant financial relationships with commercial interest(s). Authors The authors of this CME activity have reported no relevant financial relationships with commercial interest(s).

planning and implementation of this CME activity, to identify and mitigate conflits of interest for all individuals in a position to control the content of this CME activity. Learning Objectives After completing this learning activity, participants should be able to describe recent trends in the epidemiologic patterns of melanoma, including ethnic disparities in melanoma mortality; identify when a private practice dermatologist is required to report melanoma cases to a cancer registry; locate and access central cancer reporting registries (http://apps.nccd.cdc.gov/cancercontacts/npcr/contacts.asp); and recognize and access national and state-based sources on surveillance systems for sun protection behaviors. Date of release: November 2011 Expiration date: November 2014 Ó 2011 by the American Academy of Dermatology, Inc. doi:10.1016/j.jaad.2011.04.037 Technical requirements: American Academy of Dermatology: d Supported browsers: FireFox (3 and higher), Google Chrome (5 and higher), Internet Explorer (7 and higher), Safari (5 and higher), Opera (10 and higher). d JavaScript needs to be enabled. Elsevier: Technical Requirements This website can be viewed on a PC or Mac. We recommend a minimum of: d PC: Windows NT, Windows 2000, Windows ME, or Windows XP d Mac: OS X d 128MB RAM d Processor speed of 500MHz or higher d 800x600 color monitor d Video or graphics card d Sound card and speakers Provider Contact Information: American Academy of Dermatology Phone: Toll-free: (866) 503-SKIN (7546); International: (847) 240-1280 Fax: (847) 240-1859 Mail: P.O. Box 4014; Schaumburg, IL 60168 Confidentiality Statement: American Academy of Dermatology: POLICY ON PRIVACY AND CONFIDENTIALITY Privacy Policy - The American Academy of Dermatology (the Academy) is committed to maintaining the privacy of the personal information of visitors to its sites. Our policies are designed to disclose the information collected and how it will be used. This policy applies solely to the information provided while visiting this website. The terms of the privacy policy do not govern personal information furnished through any means other than this website (such as by telephone or mail).

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Background: Skin cancer is the most common form of cancer in the United States. Melanoma skin cancer is particularly deadly; more than 8000 US residents die from it each year. Although recent reports suggest that melanoma incidence rates have been increasing, these apparent increases could be caused by an increase in reporting and/or screening, and by an actual increase in the occurrence of melanoma. Objective: In this report, we describe methods used in this supplement to assess the current burden of melanoma in the United States using data from two federal cancer surveillance programs: the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries and the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results program. We also provide basic descriptive epidemiologic data about melanoma in the United States. Methods: Cancer incidence data from population-based cancer registries that participate in the CDC National Program of Cancer Registries and/or the NCI Surveillance, Epidemiology, and End Results Program covering 78% of the US population for 2004 to 2006 were used. Results: Over 45 thousand melanomas were diagnosed annually, with a rate of 19 cases per 100,000 persons. Limitations: Melanoma rates may vary because of differences in reporting, diagnosis, and screening. Conclusion: To our knowledge, the articles in this supplement constitute the first comprehensive examination of the overall burden of melanoma in the United States based on data from a majority of the US population. ( J Am Acad Dermatol 2011;65:S6.e1-12.) Key words: cancer; epidemiology; melanoma; methods; public health; surveillance.

Skin cancer is the most common form of cancer in the United States.1 The two most common types of skin cancerebasal cell and squamous cell carcinomaseare highly curable. Melanoma occurs less frequently but kills more people; more than 8000 US residents die from melanoma each year.2 Although melanoma incidence and mortality rates are highest among adults age 75 years and older, melanoma is among the top 10 most common cancers for those aged 15 to 29 years.2,3 Exposure to ultraviolet (UV) light (from sunlight or artificial sources, eg, tanning beds) is one of the

most preventable known risk factors for melanoma.4 Genetic factors, however, are also associated with melanoma; people with lighter skin color, many large nevi (moles), blue eye color, and red or blonde hair color are at increased risk.5 The modifying role of genetic factors may also explain why the association between UV exposure and cancer risk is not as clear-cut for melanoma as it is for basal and squamous cell skin cancers.6 Among all major demographic groups in the United States, non-Hispanic white males have the highest incidence rate of melanoma.7

From the Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlantaa; Cancer Data Registry of Idahob; Louisiana Tumor Registryc; Florida State Cancer Registryd; University of Southern California/Keck School of Medicinee; and Missouri Cancer Registry and Department of Health Management and Informatics, University of Missouri-Columbia.f Publication of this supplement to the JAAD was supported by the Division of Cancer Prevention and Control, Centers for Disease Control and Prevention (CDC). Conflicts of interest: None declared. The opinions or views expressed in this supplement are those of the authors and do not necessarily reflect the opinions,

recommendations, or official position of the journal editors or the Centers for Disease Control and Prevention. Preliminary findings from this study were presented at the 2010 Annual Conference of the North American Association of Central Cancer Registries in Quebec City, Quebec, Canada, June 19-25, 2010. Accepted for publication April 3, 2011. Reprint requests: Meg Watson, MPH, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, 4770 Buford Hwy, MS-K55, Atlanta, GA 30341. E-mail: MWatson2@ cdc.gov. 0190-9622/$36.00

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Some reports have suggested that melanoma inciother than white, and information on the associadence rates have been increasing,8,9 whereas others tion between UV exposure and melanoma rates by suggest that recent increases may be leveling off.10 geographic area and socioeconomic status, using Determining the extent to which melanoma incithe most representative high-quality data available dence rates have changed is difficult, in part because to date in the United States. many melanoma cases are diagnosed in nonhospital settings and thus may be missed by central cancer METHODS registries (CCRs), which traData sources ditionally have collected Cancer registry and CAPSULE SUMMARY most of their cases from hosmortality surveillance pitals. Improvements in case systems. The articles in We describe methods used in this reporting, therefore, would this supplement are based supplement to assess the current burden likely produce apparent inon cancer incidence data of melanoma in the United States using creases in melanoma incifrom population-based candata from two federal cancer surveillance dence rates, as would cer registries that participate programs. increased screening (through in the Centers for Disease This article also provides a basic the recognition of previously Control and Prevention overview of the descriptive undiagnosed tumors).11-14 (CDC) National Program of epidemiology of melanoma, using data True increases in melaCancer Registries (NPCR); including more than 45 thousand noma incidence rates are the National Cancer Institute melanomas diagnosed each year and thought to be related to in(NCI) Surveillance, Epidecovering up to 78% of the US creases in unprotected UV miology, and End Results population. exposure.15,16 Variation in (SEER) Program; or melanoma rates by state can The SEER both.7,21,22 be a result of variations in factors such as altitude, Program, begun in 1973 as a result of the National latitude, and weather, all of which affect UV expoCancer Act, initially collected and published cancer sure: among whites, the lowest rate of melanoma incidence and survival data from population-based during 2002 to 2006 (13/100,000) was in Alaska cancer registries of 5 states and 4 metropolitan areas, where UV exposure is generally low, and the highest which covered approximately 10% of the US popurate (62/100,000) was in Hawaii, where UV exposure lation. Over time, the SEER Program has expanded is generally high.2,17 Because melanoma incidence its coverage to include 9 states and 6 metropolitan rates have increased while melanoma mortality has areas, approximately 26% of the US population. remained relatively stable, some have proposed that Recognizing the need for more complete cancer increases in incidence rates reflect better detection of incidence data, Congress established the NPCR in thinner tumors of unknown clinical significance 1992.23 NPCR now supports cancer registries in 45 18,19 However, recent research through screening. states, the District of Columbia, Puerto Rico, and the indicates that incidence rates of thicker melanomas Pacific Island jurisdictions, which collectively cover are also increasing in certain populations,12,20 and 96% of the population (Fig 1). NPCR and SEER that differences in diagnosis by histology have not provide dual support to 4 statewide cancer registries. changed over time in ways that would be expected if In addition, the SEER metropolitan-area and specialincreased melanoma screening were solely responpopulation cancer registries report their incidence sible for increases in melanoma incidence rates.12 data to both NCI and the NPCR statewide cancer Although difficulties in consistent histologic diagnoregistries in their respective states. Together, NPCR sis of melanomas persist, histologic criteria have not and SEER now collect cancer incidence data for the evolved sufficiently to account for the increasing entire US population. Both NPCR and SEER data are incidence in melanoma rates. collected and reported with use of standard data Until now, estimates of the burden of melanoma items and uniform codes and procedures, as docuin the United States have been most often based on mented by the North American Association of data from half of the US population or less.9,12 The Central Cancer Registries (NAACCR).24 Registries in articles in this supplement, however, are based on each program also collect additional data items as combined high-quality data from two federal surrequired by their funding agencies and may also veillance programs covering up to 78% of the US collect area- or state-specific data items. Reportable population (Table I). They also provide important skin cancers include in situ and invasive primary new information on the burden of melanoma in the melanomas and other rare cutaneous cancers but not United States, including the burden in populations basal cell or squamous cell carcinomas of the skin, d

d

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Abbreviations used: AI/AN: API: CCR: CDC: NAACCR: NCI: NPCR: SEER: SS2K: UV:

American Indian/Alaska Native Asian/Pacific Islander central cancer registry Centers for Disease Control and Prevention North American Association of Central Cancer Registries National Cancer Institute National Program of Cancer Registries Surveillance, Epidemiology, and End Results SEER Summary Stage 2000 ultraviolet

except for those on the skin of the genital organs.25 Cancer cases are coded according to criteria in the version of the International Classification of DiseaseseOncology in use at the time of diagnosis. Hospitals and other facilities that diagnose or treat cancer collect and report cancer incidence data to CCRs. All SEER registries and some NPCR-funded registries also collect follow-up information used in determining cancer survival statistics.26 Tumor, treatment, and demographic information for cancer cases are obtained primarily from medical records. Although most cancer cases are still reported by hospitals, data about these cases are increasingly being obtained from nonhospital sources such as pathology laboratories, radiation facilities, freestanding surgery centers, long-term care facilities, and physicians’ offices. Medical and demographic information about a small percentage of these cases ( # 2% of all skin cancer cases, and \0.5% of melanoma cases) is obtained solely from death certificates. Before submitting data to CDC or the NCI, CCR staff consolidate the data received from hospitals and other facilities and use death certificates and other sources of data to update information about the vital status of patients whose cases are already in the registry.27 Because the data submitted by the CCRs are deidentified, they can be used in statistical and analytic summaries and released in restricted data sets for research.7,28 For deaths caused by cancer, we used cancer mortality data obtained from death certificates containing demographic information and cause of death throughout the United States and coded using the version of the International Classification of Disease in use at the time of death. These data are reported to state vital statistics offices and consolidated into a national database by CDC through the National Vital Statistics System.29 Underlying cause of cancer death was coded to primary cancer site according to criteria in the International Statistical Classification of Disease, 10th Revision.30-32

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Databases used in this supplement. As noted previously, the NPCR and SEER registries together have covered 100% of the US population since 1998; however, the cancer incidence data reported in this supplement were only from registries that met the following high-quality publication criteria for the United States Cancer Statistics report for all years from 1999 through 2006 or from 2004 through 2006 (depending on which set of years was used): case ascertainment of at least 90% of expected cases as estimated with use of methods developed by NAACCR; greater than or equal to 97% of cases passed a standard set of computerized edits; less than or equal to 5% of cases reported by death certificate only; less than or equal to 5% of cases with missing information on race; less than or equal to 3% of cases with missing information on sex; and less than or equal to 3% of cases with missing information on age.7,33 In addition, articles in this supplement also excluded data from Illinois, New York, and Texas at the request of those states. Some of the articles in this supplement are based on NPCR and SEER data from 2004 through 2006; these data were from 46 registries that covered 77.6% of the US population during those years (Table I): By race/ethnicity, our study for 2004 to 2006 covers: 77.5% of whites (80.0% of non-Hispanic whites), 77.5% of blacks, 78.9% of Asian/Pacific Islanders (API), 77.8% of American Indian/Alaska Natives (AI/ AN), and 65.1% of Hispanics. Regionally, 64.7% of the population in the Northeast is covered, as are 72.3% of the Midwest, 78.7% of the South, and 91.3% of the West. To examine more years of data or to include larger case counts, some articles included in this supplement use NPCR/SEER data from 1999 through 2006 drawn from 38 registries that covered 67.2% of the US population during those years. Finally, because the SEER program has been in existence since 1973, some articles examining treatment, trends, and survival, which require more detailed data over a longer period of time, were limited to SEER data only. Fig 1 shows a map of areas included in the NPCR and SEER programs. Because melanoma is increasingly diagnosed and treated in nonhospital settings, collecting these cases poses challenges for CCRs that primarily collect most of their cases from hospitals and may not have resources to collect data from nonhospital settings. To address concerns about underreporting of melanoma cases and to attempt to estimate the percentage of melanoma cases not identified by CCRs, we evaluated invasive melanoma cases by state according to several criteria, including the ratio of earlystage to late-stage cases (because early-stage cases are more likely to be diagnosed and treated in

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Table I. Data sets used in analyses reported in this supplement 1999-2006

2004-2006

38 Registries (covering 67.2% of US population)

Alaska California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota

Montana Nebraska Nevada New Hampshire New Jersey New Mexico North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina Utah Vermont Washington West Virginia Wyoming

46 Registries (covering 77.6% of US population)

Alabama Alaska Arkansas California Colorado Connecticut Delaware Washington, DC Florida Georgia Hawaii Idaho Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi

Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Utah Vermont Virginia Washington West Virginia Wyoming

The 2004 to 2006 data set is used for current article and articles by Richards17 and Singh34 included in this supplement. The 1999 to 2006 data set is used for articles by Wu,35 Weir,36 and Lai37 included in this supplement. Articles in this supplement by Jemal,20 Balamurugan,38 and Pollack39 used Surveillance, Epidemiology, and End Results data only.

Fig 1. States and metropolitan areas supported by Centers for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) program and National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program.

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nonhospital settings and thus more likely to be undercounted) and the ratio of incidence rates to mortality (because death from melanoma is less likely to be missed, a lower than expected melanoma incidence to mortality ratio suggests possible underreporting of cases). In addition, we performed statistical modeling similar to modeling used in other articles included in this supplement to attempt to determine whether variations in incidence by state were a result of chance.17,34 States with several of these indicators suggesting that melanoma cases may have been missed were contacted for more information regarding the completeness of their melanoma data. Because factors other than unreported cases may affect incidence rates, state-specific issues may have affected incidence rates. NPCR data for this supplement were reported to CDC as of November 30, 2008, or January 31, 2009. SEER data were reported to NCI as of November 2008 and were made available through the SEER Program limited use data file released in April 2009.40 Data from states that are supported by both NPCR and SEER were reported to CDC as of November 30, 2008, or January 31, 2009.7 Variation by race (white, black, API, AI/AN) and Hispanic ethnicity were examined extensively in this supplement. NPCR- and SEER-funded registries obtain information on the race and Hispanic ethnicity of patients with cancer from medical records, sometimes augmented by other sources (which are particularly needed in cases reported by physicians’ offices or pathology laboratories, the records of which often do not contain race/ethnicity information). Identification of Hispanic ethnicity for cancer cases was augmented by the NAACCR Hispanic Identification Algorithm, a hierarchical algorithm that uses race, birthplace, sex, maiden name, and surname.41 CDC and other national partners have established a strategy to improve identification of cancer cases among AI/AN by linking with Indian Health Service records. However, because Indian Health Service covers only federally recognized tribal areas, and because many AI/AN in urban areas do not use Indian Health Service, cancer cases in AI/ AN populations are still likely to be underreported. Cancer death data for 2004 to 2006 reported in this supplement are based on records of deaths during that period received as of April 2009. Because the 2003 revision of the US Standard Certificate of Death allows medical examiners to indicate multiple races for decedents, the racial code for multiracial decedents was changed to indicate a single race (white, black, AI/AN, or API).42 The population (denominator) data used to calculate cancer incidence rate and mortality were

Table II. Histology categories used in this supplement

ICD-O-3 code

ICD-O-3 histologic type

Percentage of all melanomas in 2004-2006 data set

Superficial spreading melanoma 8743 Superficial spreading 28.8% melanoma Nodular melanoma 8721 Nodular melanoma 6.9% Lentigo maligna melanoma 8742 Lentigo maligna melanoma 6.0% Acral lentiginous melanoma 8744 Acral lentiginous 1.0% melanoma, malignant Melanoma NOS and other 8720-8790 with exception of above 57.2% numbers Subcategories of interest within NOS and other: 8745 Desmoplastic melanoma, 1.2% malignant 8730 Amelanotic melanoma 0.4% 8746 Mucosal lentiginous 0.0% melanoma Melanomas in ‘‘Subcategories of interest’’ category are included in ‘‘Melanoma NOS and other’’ category. All cases used in histology analyses are microscopically confirmed (99% of all cases in data set for 2004-2006). ICD-O-3, International Classification of DiseaseseOncology, Third Edition; NOS, not otherwise specified.

obtained from the 2000 US Census; SEER population data for Hawaii were modified to improve the accuracy of rates for the Hawaii population.43 Case definition and explanation of inclusion and exclusion criteria We included cancer cases coded as ‘‘melanoma of the skin’’ (defined as having an International Classification of DiseaseseOncology, Third Edition site code of C44.0-C44.9 and histology codes of 8720-8790).44 Noncutaneous melanomas and melanomas in genital areas (eg, vulva, penis, and perianal areas) are not coded as ‘‘melanoma of the skin’’ and thus were not included in analyses in this supplement. Authors limited analyses to invasive melanomas unless otherwise specified. Melanoma histology was examined by groups as described in Table II; all analyses of histology were restricted to melanoma cases confirmed by microscopic examination. In some studies included in this supplement, all analyses were only of such microscopically confirmed cases of melanoma. During 2004 through 2006, 99.1% of invasive melanoma cases in the NPCR/SEER combined data set were microscopically confirmed. Cancer cases in which patients’ sex

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or age were unknown were excluded from all analyses. Some people have multiple cases of melanoma. The melanoma rates and counts reported in this supplement are based on the number of melanomas in the population, not the number of people with melanoma. Because people with multiple melanomas tend to be older, the age distribution of people with cases of melanoma reported in this supplement is older than if analyses had been based only on patients’ first case of melanoma. Because of these factors, caution should be exercised when interpreting estimates of risk for melanoma presented in this supplement. Some articles in this supplement examine the burden of in situ cancer (behavior code/2 in the NPCR and SEER databases). Because many melanomas are diagnosed and treated in nonhospital settings, they are more likely to be underreported than other cancers, especially at early stages. In situ melanomas are less likely to be reported than invasive melanomas because they require less follow-up treatment and because CCRs that receive reports on paper from nonhospital facilities generally give priority to abstracting information about invasive cases.45 For that reason, rates of in situ melanoma cancers reported in this supplement should be interpreted with caution. Statistical analysis Age-adjusted incidence and death rates were calculated per 100,000 persons unless otherwise specified. Rates were age-adjusted to the 2000 US standard population by the direct method, using 19 age groups (\1, 1-4, 5-9, 10-14, 15-19, . $ 85 years).46 Incidence and death rates and 95% confidence intervals were calculated with SEER*Stat (version 6.5.2), a statistical software package developed by the NCI.47 Confidence intervals were calculated with the gamma method using the modification of Tiwari et al.48 Rates were calculated by age, stage, and US census region (Northeast, South, East, or West).49 Rates were also calculated for the following racial/ ethnic groupings: white (all, Hispanic, and nonHispanic), black, API, AI/AN, and Hispanic. The ‘‘Hispanic’’ category includes people of all races. Other and unknown categories were not reported separately because denominator information was not available for these groups; thus, the total number of melanoma cases among people in the racial/ ethnic categories for which rates were reported do not equal the number of cases in the ‘‘all races combined’’ category. Typically; CDC reports race and Hispanic ethnicity separately; here, we combined race and ethnicity categories to allow for

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Table III. Descriptive epidemiology of invasive melanomas in United States, 2004 to 2006 Average annual count

All ages/races Age at diagnosis, y 0-14 15-34 35-64 $ 65 Sex Male Female Race/ethnicity White White, Hispanic White, non-Hispanic Black Asian/Pacific Islander American Indian/Alaska Native Hispanic* Site on body Face and ears Scalp and neck Trunk Upper extremities Lower extremities NOS and other Histology Superficial spreading melanoma Nodular melanoma Lentigo maligna melanoma Acral lentiginous Melanoma NOS and other Stage Localized Regional Distant Unstaged Region Northeast Midwest South West

Rate

95% CI

45,566 19.22 (19.12-19.33) 115 0.25 (0.22-0.27) 3819 6.11 (6.00-6.22) 22,929 24.27 (24.09-24.45) 18,703 64.57 (64.03-65.10) 25,782 24.05 (23.88-24.22) 19,784 15.88 (15.75-16.00) 43,168 21.55 (21.43-21.67) 779 4.71 (4.51-4.92) 42,389 23.27 (23.14-23.40) 240 1.06 (0.98-1.14) 144 1.51 (1.36-1.66) 84 4.58 (4.00-5.22) 826

4.69 (4.50-4.90)

5959 3317 14,748 11,156 8080 2305

2.51 1.39 6.23 4.70 3.43 0.97

(2.47-2.55) (1.37-1.42) (6.17-6.29) (4.65-4.75) (3.38-3.47) (0.95-0.99)

13,002

5.50 (5.44-5.55)

3126 2729

1.31 (1.29-1.34) 1.15 (1.12-1.17)

453 0.19 (0.18-0.20) 25,853 10.91 (10.83-10.99) 35,866 15.14 (15.05-15.23) 4106 1.73 (1.70-1.76) 1782 0.75 (0.73-0.77) 3812 1.61 (1.58-1.64) 8040 8822 16,290 12,413

20.82 17.82 18.36 20.71

(20.56-21.09) (17.61-18.04) (18.21-8.53) (20.52-0.92)

Data are from population-based cancer registries that participate in National Program of Cancer Registries and/or Surveillance, Epidemiology, and End Results Program and meet high-quality data criteria (see Table I for list of registries). These registries cover 77.6% of population for 2004 to 2006. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130). CHSDA, Indian Health Service Contract Delivery Areas; CI, confidence interval; NOS, not otherwise specified. *Hispanic ethnicity is not mutually exclusive from race.

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Fig 2. Invasive melanoma incidence rates among non-Hispanic whites, by state, 2004 to 2006. Data are from population-based cancer registries that participate in National Program of Cancer Registries and/or Surveillance, Epidemiology, and End Results Program and meet high-quality data criteria (see Table I for list of registries). These registries cover 77.6% of population for 2004 to 2006. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130).

examination of non-Hispanic whites, who are at highest risk for melanoma. The cancer staging system used by the NPCR (SEER Summary Stage) changed during our years of study. For cancers diagnosed in 1999 to 2000, stage was coded according to SEER Summary Stage 1977; for cancers diagnosed in 2001 to 2003, stage was coded according to SEER Summary Stage 2000 (SS2K); and for 2004 to 2006, stage was coded according to Collaborative Stage and then recoded into Derived SS2K for 2004 to 2006.50 Melanoma stage was not entirely consistent between SEER Summary Stage 1977 and SS2K; compatibility with Derived SS2K is unknown.37 Thus, most articles examining stage using NPCR data used the most recent coding scheme (Derived SS2K) and limited analysis to diagnosis years 2004 to 2006.

RESULTS Overview of the distribution of melanoma in the United States This ‘‘Results’’ section provides a general overview of the distribution of melanoma incidence and mortality in the United States. During 2004 to 2006,

136,697 cases of melanoma were reported to the registries previously described, covering 77.6% of the population with a rate of 19.2 per 100,000 (Table III); state rates ranged widely, from 11.9 to 72.4 (Fig 2). Melanoma incidence rates had a strong positive association with age; among people approximately age 45 years or younger, rates were slightly higher among females, but among those older, rates were higher among men, with the difference generally increasing with age (Fig 3). Melanoma rates varied widely by race/ethnicity, with the rate among nonHispanic whites being 20-fold higher than that among blacks. Overall, melanomas occurred most commonly on the trunk and upper extremities (Table III); however, although the trunk was the most common location for melanomas among males, the lower extremities were the most common location for melanomas among females (Fig 4). Melanoma rates by histology and stage are summarized in Table III. The most common code for melanomas in our data set (57%) was ‘‘melanoma not otherwise specified and other,’’ (unspecified melanoma histology); ‘‘superficial spreading melanoma’’ was the most common specified histologic type reported.

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Table IV. Melanoma mortality in United States, 2004 to 2006 Average annual count

Fig 3. Age-specific incidence rates of invasive melanoma, by sex, United States, 2004 to 2006. Data are from population-based cancer registries that participate in National Program of Cancer Registries and/or Surveillance, Epidemiology, and End Results Program and meet highquality data criteria (see Table I for list of registries). These registries cover 77.6% of population for 2004 to 2006. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130).

Fig 4. Incidence rates of invasive melanoma, by site on body and sex, United States, 2004 to 2006. Data are from population-based cancer registries that participate in National Program of Cancer Registries and/or Surveillance, Epidemiology, and End Results Program and meet highquality data criteria (see Table I for list of registries). These registries cover 77.6% of population for 2004 to 2006. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130). NOS, Not otherwise specified.

During 2004 to 2006, 24,738 deaths were attributed to melanoma, an average of 8246 deaths per year (rate of 2.7 deaths/100,000 people) (Table IV). The death rate was highest by age among those aged 65 years or older; higher among males than among females (rates of 4.0 vs 1.7, respectively); and highest by race/ethnicity among non-Hispanic whites.

DISCUSSION Data limitations This study has several limitations. As previously discussed, differences in melanoma incidence rates

All deaths Age at death, y 0-14 15-34 35-64 $ 65 Sex Male Female Race/ethnicity White White, Hispanic White, non-Hispanic Black Asian/Pacific Islander American Indian/ Alaska Native Hispanic* Region Northeast Midwest South West

Rate

95% CI

8246

2.71

(2.68-2.74)

; 241 3282 4720

; 0.30 2.66 12.69

5295 2951

4.01 1.74

(3.95-4.07) (1.71-1.78)

8066 168 7891 123 40 17

3.09 0.76 3.31 0.44 0.37 0.80

(3.05-3.13) (0.69-0.83) (3.27-3.36) (0.40-0.49) (0.30-0.44) (0.59-1.07)

170

0.72

(0.66-0.79)

1616 1855 3020 1754

2.68 2.68 2.75 2.71

(2.60-2.75) (2.61-2.75) (2.69-2.81) (2.64-2.78)

; (0.28-0.32) (2.61-2.71) (12.48-12.91)

Mortality data from National Center for Health Statistics, Centers for Disease Control and Prevention. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130). CI, Confidence interval; ;, cell was suppressed because there were \16 cases during study period. *Hispanic ethnicity is not mutually exclusive from race categories (white, black, Asian/Pacific Islander, American Indian/Alaska Native).

may be a result of differences in the thoroughness of case reporting, differences in screening and diagnosis, or true differences in rates. Fig 5 shows average melanoma rates for states with low, medium, and high rates of melanoma, by early and late stage. Rates of early-stage melanoma differed significantly, whereas rates of late-stage melanoma differed little by state. Although early-stage melanomas are more likely to go unreported than latestage melanomas, differences in melanoma rates are unlikely to be caused solely by differences in reporting. Melanomas in people with darker skin tone are less likely to be diagnosed at an early stage, possibly because they may be less evident or because people with darker skin are less concerned about melanoma because they know that they are at relatively low risk. State rates may also vary for other reasons, including differences in socioeconomic status of the population or differences in UV

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Fig 5. Mean melanoma incidence rates, by stage, in 3 groups of US states, 2004 to 2006. Melanoma incidence rates for states divided into 3 tertiles on basis of their rates of early-stage melanoma. Although early-stage rates vary widely, late-stage rates are similar. Data are from population-based cancer registries that participate in National Program of Cancer Registries and/or Surveillance, Epidemiology, and End Results Program and meet highquality data criteria (see Table I for list of registries). These registries covered 77.6% of population for 2004 to 2006. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130).

exposure and sun-protection behaviors. See Fig 6 for an example of how one state addressed relatively low melanoma incidence rates. Also, because we did not limit to only the first primary cancer in a patient (82% of cases in our data set are first primaries) but included all cases diagnosed in persons with multiple subsequent cases of melanoma, some states may have high rates of earlystage melanomas because of more patients with multiple cases of melanoma. Although some states and facilities require the collection of data about tumor thickness, this information is not consistently reported to NPCR at the national level. Thus, articles in this supplement use SEER data to examine tumor thickness. Tumor thickness and depth of invasion have previously been shown to be strongly associated with prognosis and survival among patients with melanoma, as have ulceration and mitosis.51,52 Data on tumor thickness are expected to be included in NPCR data in the future.

CONCLUSION To our knowledge, the articles in this supplement constitute the first comprehensive examination of the overall burden of melanoma in the United States based on data from a majority of the US population. Given that current population-based cancer registries have covered 100% of the US population since 1998, we hope that with more thorough reporting of melanoma cases to these registries, we will soon be

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Fig 6. State example: Louisiana. Data from Louisiana Tumor Registry. Rates are per 100,000 population and are age-adjusted to 2000 US standard population (19 age groups; Census P25-1130).

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