Cancer survivor perspectives on sharing patient-generated health data with central cancer registries.

PURPOSE: Central cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and care. However, this is dependent on the willingness of patients to share such data. This study examines cancer survivors' perspectives about sharing PGHD with central cancer registries. METHODS: Three U.S. central registries sampled colorectal, non-Hodgkin lymphoma, and metastatic breast cancer survivors 1-4 years after diagnosis, recruiting them via mail to participate in one of seven focus groups (n = 52). Group discussions were recorded, transcribed, and thematically analyzed. RESULTS: Most survivor-participants were unaware of the existence of registries. After having registries explained, all participants expressed their willingness to share PGHD with them if treated confidentially. Participants were willing to provide information on a variety of topics (e.g., medical history, medications, symptoms, financial difficulties, quality of life, biometrics, nutrition, exercise, and mental health), with a focus on long-term effects of cancer and its treatment. Participants' preferred mode for providing data varied. Participants were also interested in receiving information from registries. CONCLUSIONS: Our results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.

Native American Cancer Conference III. Cognitive correlates and impressions of attendees.

BACKGROUND: The results of preconference and postconference surveys, as well as conference evaluation forms, distributed to attendees at the "Native American Cancer Conference III: Risk Factors, Outreach and Intervention Strategies," Seattle, Washington, June 16-19, 1995, are presented. METHODS: Conference attendees were requested to complete a multi-item survey designed to assess knowledge and perceptions relating to cancer among native peoples at the beginning and end of the conference. The evaluation instrument solicited qualitative impressions of the conference. RESULTS: Survey respondents were predominantly female (70%), and approximately half were native persons representing 48 different American Indian and Alaska Native communities. Knowledge levels were generally high at baseline for most items relating to cancer, with evidence of significant improvement for several items on the postconference survey. The majority of respondents believed that cancer was of equal importance compared with other health problems and that cancer services for American Indians and Alaska Natives are generally less extensive compared with the majority population; there was no evidence of opinion change noted in the postconference survey. Results from the qualitative evaluation expressed the unique and affirmative experiences among participants in terms of the social, cultural, and informational sharing that occurred. CONCLUSIONS: It is hoped that the positive experiences of conference attendees will serve to stimulate the organization of similar programs and the design of research projects that both assess and expand cancer control services among Native peoples.

Issues to consider when choosing a computer program to assist Native American collection of accurate cancer data.

BACKGROUND: Cancer registries are the primary source of cancer surveillance data and are an important component of a successful cancer control program. Some Native American tribes are currently served by cancer registries, but many are not. Native Americans will increasingly be involved in the development of new cancer registries and in improving the quality of data in existing registries. METHODS: The search for an appropriate software package should begin with a comprehensive review of the registry's goals and objectives. Other considerations include the availability of funding and human resources. RESULTS: A good software package should be easy to use, able to provide readable documentation, flexible enough to accommodate change, and have a proven record of success. Software vendors should offer training and should be readily available to respond to questions and problems that may arise. CONCLUSIONS: Numerous software programs are available to assist Native Americans with the collection and maintenance of cancer data, and most will meet the basic needs of a cancer registry. However, a successful cancer registration system depends on much more than software. Collaboration with an existing cancer registry may provide a reasonable alternative to developing and supporting a new registry. Professional organizations and other resources are available to provide guidance in this area.

Breast cancer among Hispanics, American Indians and non-Hispanic whites in New Mexico.

Variation in breast cancer occurrence among women in New Mexico's three major ethnic groups has not previously been assessed. The address the descriptive epidemiology of breast cancer in New Mexico Hispanics, American Indians, and non-Hispanic whites, we calculated incidence rates from population-based registry data covering 1969-1987 and mortality data collected from 1958 to 1987. Breast cancer incidence and mortality rates for New Mexico's non-Hispanic white women were comparable to those for white women nationwide. In contrast, American Indian women had extremely low incidence and mortality rates for breast cancer; rates for Hispanics were intermediate, but well below those for non-Hispanic white women throughout the study period. Pronounced temporal trends in breast cancer occurrence were evident among Hispanic women, with the incidence rate increasing by 56% over the 19 years of available data and the mortality rate increasing by nearly 100% over 30 years. Age-specific incidence and mortality rates increased at all ages for successive birth cohorts of Hispanic women. For non-Hispanic whites, increasing incidence and mortality rates were also observed, but the increments were much smaller, approximately 15% for incidence and 30% for mortality. Our data show substantial ethnic differences in breast cancer incidence and mortality in New Mexico, suggesting the need for aetiological investigations to assist in controlling this disease.

Cancer mortality among New Mexico's Hispanics, American Indians, and non-Hispanic Whites, 1958-1987.

BACKGROUND: Racial and ethnic differences in cancer incidence and mortality are well documented. New Mexico's ethnically and racially diverse population provides an opportunity to further examine ethnic and racial differences in cancer occurrence. PURPOSE: To address differences in cancer mortality among the state's Hispanics, American Indians, and non-Hispanic Whites, we examined mortality data collected from 1958 through 1987. METHODS: Sex and age-specific and age-adjusted cancer mortality rates were calculated for all sites and specific sites for American Indians, Hispanics, and non-Hispanic Whites. From 1958 through 1987, deaths due to malignant neoplasms were coded according to the International Classification of Diseases. The categories of malignant neoplasms investigated were chosen, in part, to minimize bias due to changes in disease classification. Ethnicity was assigned by the Bureau of Vital Statistics on the basis of information on death certificates. Denominators were derived from the censuses of 1960, 1970, 1980, and 1990. Age-standardized mortality rates were calculated for 5-year periods (1958-1962, 1963-1967, 1968-1972, 1973-1977, 1978-1982, and 1983-1987), with the 1970 U.S. population as the standard. We also examined age-specific rates by time period. RESULTS: Within each of New Mexico's ethnic groups, overall cancer mortality increased over the 30-year time span, and the cancer mortality rates were greater for males than for females. For most major cancer sites, mortality rates for New Mexico's non-Hispanic Whites were comparable with data for U.S. Whites. American Indians had the lowest rates for most sites, whereas cancer mortality rates for most sites among Hispanics were intermediate between the two other groups. However, Hispanics and American Indians had higher mortality rates for cancers of the gallbladder, cervix, and stomach compared with non-Hispanic Whites throughout most of the study period. Several other cancer sites showed major mortality rate differences among these racial and ethnic groups, including cancers of the colon, rectum, breast, bladder, lung, ovary, and uterus. We also observed strong temporal trends of increasing or decreasing mortality rates for several cancer sites. CONCLUSIONS: Race and ethnicity have been strong determinants of cancer mortality in New Mexico. Within the span of one generation, cancer mortality has changed substantially for some cancer sites in each of the population groups studied. IMPLICATIONS: These mortality data underscore the need for appropriately designed etiologic studies of cancer in diverse racial and ethnic groups. Such etiologic studies could provide new insights concerning risk factors for cancer and useful data for developing race- and ethnic-specific cancer control strategies.

Diabetes mortality among New Mexico's American Indian, Hispanic, and non-Hispanic white populations, 1958-1987.

OBJECTIVE: To determine the diabetes-related mortality rates among New Mexico's American Indians, Hispanics, and non-Hispanic whites over a 30-yr period. RESEARCH DESIGN AND METHODS: Death certificates were used to identify diabetes as an underlying cause of death by ethnic group in New Mexico during each 5-yr period from 1958 through 1987. The age-adjusted rates were calculated by ethnic group and sex, and temporal trends were examined. Comparison was made to U.S. white age-adjusted rates during the same time period. RESULTS: Age-adjusted diabetes mortality rates for American Indians and Hispanics increased throughout the 30-yr period, and far exceeded rates for New Mexico non-Hispanic whites and U.S. whites by the 1983-1987 time period. The rates increased most dramatically among the state's American Indians, increasing 550% among women and 249% among men. Hispanic women and men experienced increases of 112 and 140%, respectively. CONCLUSIONS: New Mexico's American Indian and Hispanic populations have higher diabetes mortality rates than non-Hispanic whites, and American Indian mortality rates have risen dramatically over the 30-yr period included in our study. Although the high prevalence of diabetes in American Indians and Hispanics is a major contributor to these rates, other factors may also influence the reported mortality rates.

Changing trends in mortality among New Mexico's American Indians, 1958-1987.

Health care availability and living conditions have improved substantially for American Indians in New Mexico over the past quarter century. To investigate the impact of these changes on health statistics, we examined mortality data collected from 1958 to 1987 for American Indians in the state. We analysed the data for all causes of death combined and for specific causes, and compared these data with figures for nonHispanic whites in the state. Age-adjusted mortality rates were calculated for 5-year periods for each ethnic-gender group, using denominators from US Census reports. Mortality rates for all causes combined did not improve significantly for American Indian males from 1958 to 1987, although the rates for American Indian females showed an 8% decline. Infectious disease-related mortality rates for American Indians decreased dramatically over the 30-year study period; however, mortality rates for cancer and diabetes increased over the 30-year period. Mortality rates for injuries and alcoholism among American Indians increased greatly from 1958 to 1977 and then declined later in the study period, but they were consistently higher than rates for whites. The study indicates that several chronic diseases remain of major public health importance for New Mexico's American Indian population.

Survival of children and adolescents with acute lymphoid leukemia. A study of American Indians and Hispanic and non-Hispanic whites treated in New Mexico (1969 to 1986).

During the period 1969 to 1986, 196 American Indian and Hispanic and non-Hispanic white children and adolescents (ages, 0 to 19 years) were treated for acute lymphoid leukemia (ALL) at the University of New Mexico affiliated institutions. There were 28 American Indians (14%), 91 Hispanic whites (46%), and 77 non-Hispanic whites (39%). Median survivals for patients undergoing antileukemic therapy ranged from 8 months for American Indian boys to 140 months for non-Hispanic white girls. American Indian boys had the highest initial median leukocyte count (WBC) at 23.8 X 10(9)/l. Compliance problems occurred most commonly among American Indian children of both genders. Other clinical and pathologic features evaluated in this study were distributed similarly among the ethnic gender groups. Multi-variate analysis revealed that independent prognostic variables for survival included initial WBC, age, and gender. Ethnicity and compliance problems were possible, but confounded, prognostic variables. To the authors' knowledge this represents the most comprehensive study to date of ALL in American Indian patients.

Fatal poisoning among American Indian, Hispanic, and non-Hispanic white children in New Mexico, 1958 to 1982.

Childhood fatalities from unintentional poisoning are a substantial health problem in New Mexico, which ranks second in the nation in injury-related mortality rates. To determine the extent of poison-related mortality in children in this state, and to examine time trends and differences in mortality rates in New Mexico's American Indian, Hispanic, and non-Hispanic white children aged 0 to 14 years, we analyzed vital records collected from 1958 to 1982. New Mexican children experienced higher mortality rates than US white children of similar age--approximately eight times higher for children under 5 years old. Of the three ethnic groups, American Indian children had the highest mortality rates from unintentional poisoning during the 25-year period. Children less than 5 years old were at the highest risk for poison-related fatalities among all three ethnic groups.

Comparison of self- and spouse reports of snoring and other symptoms associated with sleep apnea syndrome.

We compared self- and spouse reports of snoring and other symptoms of sleep apnea syndrome ascertained from married couples in a community-based survey. Agreement between the two types of report varied between 70-98%, but was modest (kappa = -0.01-0.52) when adjusted for chance. For men, spouse reports yielded higher prevalence rates for snoring and for four other symptoms. For women, estimates of symptom prevalence were consistently lower by spouse report than by self-report. In multivariate analyses, the effect on snoring of gender and obesity increased and of age decreased when spouse reports were compared to self-reports. Snoring, according to spouse reports, was a significant risk factor for ischemic heart disease, but snoring according to self-reports showed a smaller effect and was not statistically significant. Snoring was not associated with hypertension when defined by either self- or spouse report. These observations suggest that questionnaire data of snoring and other symptoms of sleep apnea syndrome may be misclassified in part, and that such misclassification can affect estimates of prevalence and effects.

Symptoms, signs, and ill-defined conditions: a leading cause of death among minorities.

The Manual of the International Classification of Diseases, Injuries, and Causes of Death includes the category, "symptoms, signs, and ill-defined conditions" for nonspecific causes of death. To determine whether this categorization of cause of death is commonly applied to New Mexico's minority populations, the authors examined state vital records data for 1958-1982. Age-specific and age-adjusted death rates were calculated by 5-year intervals for Hispanics, American Indians, and non-Hispanic whites. Death rates attributed to symptoms, signs, and ill-defined conditions in all three major ethnic groups in New Mexico far exceeded the national rate for whites. For males in the period 1978-1982, American Indians had the highest rates (115.6 per 100,000 males), followed by Hispanics (58.3 per 100,000 males), and non-Hispanic whites (49.2 per 100,000 males); the national rates were 41.3 and 13.1 per 100,000 males for blacks and whites, respectively. Comparable differences were observed among females. The authors suggest that the death rate for deaths attributed to symptoms, signs, and ill-defined conditions may be a potential indicator of access to and use of health services and that the categorization may strongly affect cause-specific death rates in minority populations.

Injury mortality in American Indian, Hispanic, and non-Hispanic white children in New Mexico, 1958-1982.

Childhood fatalities from injuries are a serious public health problem in New Mexico, a state which ranks second in the nation in injury-related mortality rates. To determine the extent of injury mortality in children in this state, and to examine time trends and differences in mortality rates in New Mexico's American Indian, Hispanic, and non-Hispanic white children aged 0-14 years, we analyzed vital records collected from 1958 to 1982. American Indian children experienced the highest mortality rates from all external causes combined. Among all three major ethnic groups, children aged 0-4 years were at the highest risk for injury fatalities. Unintentional injuries accounted for 85% of all injury-related deaths. Motor vehicle crashes and drowning were the first and second leading causes of death in all three groups, while other important causes of death included fire, choking on food or other objects, poisoning, and homicide. Although the fatality rates on most types of injuries decreased over the 25-year period, childhood fatality rates for motor vehicle crashes and homicide increased in each ethnic group. Despite the overall decrease in injury mortality rates in New Mexican children, the rates are excessively high compared to other states, especially in American Indian children.

Violent death in the West: suicide and homicide in New Mexico, 1958-1987.

We examined New Mexico vital statistics data for suicides and homicides among the state's Hispanics, Native Americans, and non-Hispanic whites collected from 1958 to 1987. We found high age-adjusted rates for both suicides and homicides among Hispanic and Native American males, in comparison with rates for non-Hispanic white males. Suicide rates among Native American women were comparatively low, contrasting with their high homicide rates. Homicide rates for males in all three ethnic groups increased substantially over the 30-year study period. We conclude that death from violent causes, both suicide and homicide, is a major public health problem in New Mexico, and disproportionately affects minority males.

Injury mortality in New Mexico's American Indians, Hispanics, and non-Hispanic whites, 1958 to 1982.

New Mexico has extraordinarily high injury mortality rates. To better characterize the injury problem in New Mexico, we calculated proportionate injury mortality and age-adjusted and age-specific injury mortality rates for the state's 3 major ethnic groups--American Indians, Hispanics, and non-Hispanic whites. According to death certificate data collected from 1958 to 1982 and US population census figures, age-adjusted mortality rates for total external causes varied widely between the sexes and among the ethnic groups. Males in each ethnic group consistently had higher average annual age-adjusted external mortality rates than females. Injury mortality rates for American Indians of both sexes were 2 to 3 times higher than those for the other New Mexico ethnic groups. Motor vehicle crashes were the leading cause of death from injury for all 3 groups. Homicide accounted for twice the proportion of injury death in Hispanic compared with non-Hispanic white males (12.5% and 6.1%, respectively), while the proportion of males dying of suicide was highest in non-Hispanic whites. Deaths from excessive cold and exposure were leading causes of injury mortality for American Indians, but these causes were not among the leading causes of injury mortality for Hispanics or non-Hispanic whites. We conclude that the minority populations in New Mexico are at high risk for injury-related death and that the major causes of injury mortality vary substantially in the state's predominant ethnic populations.

Stomach cancer among New Mexico's American Indians, Hispanic whites, and non-Hispanic whites.

Stomach cancer incidence rates vary by ethnic group in New Mexico, with American Indians and Hispanic Whites at higher risk than the state's non-Hispanic White population. To further characterize the descriptive epidemiology of this disease in New Mexico, we investigated temporal trends in stomach cancer mortality and incidence rates. Stomach cancer mortality rates declined over a 25-year period (1958-1982) among New Mexico's Hispanic and non-Hispanic Whites. Birth cohort analysis suggests that much of the decline was achieved prior to 1968. Stomach cancer mortality rates did not drop among American Indians during the same period. Stomach cancer incidence rates remained constant for Hispanic Whites, non-Hispanic Whites, and American Indian males over a 13-year period (1969-1982), but more than doubled among American Indian females. Although environmental factors have been implicated in the etiology of stomach cancer, little is currently known about the distribution of such risk factors among the ethnic groups described in this report. The environmental and biological correlates of sex, ethnicity, and socioeconomic status that determine stomach cancer risk merit further investigation in New Mexico.

Ethnic differences in mortality from acute rheumatic fever and chronic rheumatic heart disease in New Mexico, 1958-1982.

To examine time trends and differences in mortality rates from acute rheumatic fever and chronic rheumatic heart disease in New Mexico's Hispanic, American Indian, and non-Hispanic white populations, we analyzed vital records data for 1958 through 1982. Age-adjusted mortality rates for acute rheumatic fever were low and showed no consistent temporal trends among the three ethnic groups over the study period. Age-adjusted and age-specific mortality rates for chronic rheumatic heart disease in Hispanic and non-Hispanic whites decreased over the 25-year period, although rates were higher among Hispanics than among non-Hispanics during most of the time period. In American Indians, age-adjusted mortality rates for chronic rheumatic heart disease increased between 1968 and 1977 to twice the non-Indian mortality rates during the same period. Despite this increase in mortality from chronic rheumatic heart disease among New Mexico's American Indians from 1968 to 1977, the New Mexico data generally reflect national trends of decreasing mortality from chronic rheumatic heart disease.

Mortality from lung cancer and chronic obstructive pulmonary disease in New Mexico, 1958-82.

We examined mortality from lung cancer and from chronic obstructive pulmonary disease in Hispanic White, Other White, and Native American residents of New Mexico during the period 1958-82. Age-specific mortality was calculated by combining death certificate data with population estimates based on the 1960, 1970, and 1980 censuses that were adjusted for inconsistencies in the designation of race and ethnicity. In Other Whites, age-adjusted mortality rates from lung cancer and from chronic obstructive pulmonary disease increased progressively in males and females. Mortality rates for both diseases also increased in Hispanics during the study period, but the most recent rates for Hispanics were well below those for Other Whites. Age-specific mortality rates for lung cancer declined for more recently born Hispanic women at older ages. In Native Americans, rates for both diseases were low throughout the study period and did not show consistent temporal trends.

Cigarette smoking and lung cancer in New Mexico.

We have used population-based data for the state of New Mexico to calculate cigarette-smoking-specific incidence rates for lung cancer, cumulative incidence rates for lung cancer, and estimates of the proportion of lung cancer cases attributable to smoking. For white New Mexicans, the incidence of lung cancer increased with age and was markedly higher in smokers than in nonsmokers. From 25 through 84 yr of age, the cumulative incidence of lung cancer was 0.9% in nonsmoking males and 0.5% in nonsmoking females. The cumulative incidence rates were much higher for smokers; for males who smoked 20 or more cigarettes daily from age 25, the cumulative risk of lung cancer through age 84 was 31.7%. For females with the same cigarette smoking history, the estimate of cumulative incidence through age 84 years was 15.3%. The population-attributable risks for lung cancer associated with cigarette smoking were 89.5% for males and 85.5% for females.

Lung cancer and occupation in New Mexico.

The association between occupation and lung cancer risk was examined in a population-based, case-control study of 506 patients (333 males and 173 females) and 771 control (499 males and 272 females) subjects in New Mexico. A personal interview was used to obtain lifetime occupational and smoking histories and self-reported history of exposures to specific agents. High-risk jobs were identified in advance of data analysis and linked with industrial and occupational codes for hypothesis testing. For females, lung cancer risk was not associated with employment history, but power was limited. For males, elevated risks were found for the uranium mining industry [odds ratio (OR) = 1.9; 95% confidence internal (CI) = 0.8-4.9], underground miners (OR = 2.1; 95% CI = 1.1-3.7), painters (OR = 2.7; 95% CI = 0.8-8.9), and welders (OR = 3.2; 95% CI = 1.4-7.4). For self-reported exposure to any of 18 agents, only the OR for exposure to "other metals" was elevated. The population attributable risk in males was estimated as 14% for employment in any high-risk industry or occupation with an OR above 1 in this study.

Cigarette use among Hispanic and non-Hispanic white school children, Albuquerque, New Mexico.

We conducted a survey of cigarette usage among Hispanic and non-Hispanic White school children in Albuquerque, New Mexico. The distributions of current, experimental, and never smokers were similar in the two groups. Among smokers, the average weekly cigarette consumption was 19 for Hispanic White males, 14 for non-Hispanic White males, 16 for non-Hispanic White females, and nine for Hispanic White females. Educational programs are needed to maintain the low-risk status of Southwestern Hispanics for cigarette-related diseases.