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Cancer prevalence and survivorship issues: analyses of the 1992 National Health Interview Survey.

BACKGROUND/METHODS: Relatively little is known about the size and makeup of the growing population of cancer survivors or about the social implications of a diagnosis of cancer. To explore these issues, we analyzed cancer survivorship information from the 1992 National Health Interview Survey (NHIS), and resulting cancer prevalence estimates were compared with those derived from cancer registry data. RESULTS: According to the NHIS, there were an estimated 7.2 million adult survivors of cancer-excluding nonmelanoma skin cancer-in 1992, representing 3.9% of the U.S. adult population. Comparisons with prevalence estimates from cancer registry data suggest that cancer is underreported in the NHIS. Nearly three fifths (58.0%) of cancer survivors self-identified on the NHIS reported that their cancer was first detected when they noticed something wrong and went to a doctor. The majority (55.7%) of cancer survivors had obtained a second opinion or multiple opinions regarding their treatment. Most (58.0%) had received patient educational materials from a health care provider. However, relatively few had received counseling or participated in support groups (14.2%), contacted cancer organizations after their diagnosis (10.9%), or participated in a research study or clinical trial as part of their cancer treatment (4.7%). One ninth (10.7%) of the survivors had been denied health or life insurance coverage because of their cancer. Nearly one fifth (18.2%) of the cancer survivors who worked before or after their cancer was diagnosed experienced employment problems because of their cancer. CONCLUSIONS: While cancer appears to be underreported on the 1992 NHIS, the survey provides valuable information about the medical, insurance, and employment experience of cancer survivors selected from a nationally representative sample of U.S. households.

Adult↗

Bias in the attribution of lung cancer as cause of death and its possible consequences for calculating smoking-related risks.

Most published calculations of mortality risk, especially those for lung cancer associated with smoking, are based almost exclusively on the underlying cause as recorded on death certificates. Such risk calculations implicitly assume that the conditional probability of recording lung cancer as the underlying cause of death, given that it really is the underlying cause, is the same for all exposure groups. If these probabilities are not equal for all exposure groups, we call the resulting bias a cause of death attribution bias. We analyzed the 1986 National Mortality Followback Survey, a sample of 18,733 U.S. death certificates, and the 1954-1962 Dorn study, a follow-up study of approximately 250,000 holders of U.S. Veterans Life Insurance. Both data sets include information on the smoking habits of decedents and on the underlying and contributing causes of their deaths. We found that lung cancer as an underlying cause is recorded with a much smaller relative frequency if the decedent is known to be a never-smoker and with a much larger relative frequency when the decedent is known to be a smoker. On the other hand, lung cancer as a contributing cause is recorded with a much larger frequency if the decedent is known to be a never-smoker and with a much smaller frequency when the decedent is known to be a smoker. The reverse is true for cancers other than of the lung. There is no similar pattern related to smoking for other causes of death (specifically for myocardial infarction, other chronic ischemic heart disease, diabetes, or cerebrovascular disease).(ABSTRACT TRUNCATED AT 250 WORDS)

Adult↗

Institutional policies of U.S. medical schools regarding tenure, promotion, and benefits for part-time faculty.

PURPOSE: To collect data on institutional policies regarding tenure, promotions, and benefits for part-time faculty at U.S. medical schools and determine the extent to which part-time work is a feasible or attractive option for academic physicians. METHOD: In July 1996, the authors sent a 29-item questionnaire regarding tenure, promotions, and benefit policies for part-time faculty to respondents identified by the deans' offices of medical schools in the United States and Puerto Rico. Responses were analyzed using descriptive statistics and chi-square analyses. RESULTS: Respondents from 104 of 126 medical schools (83%) completed the questionnaire; 58 responded that their schools had written policies about tenure, promotion, or benefits for part-time faculty. Tenure. Of the 95 medical schools with tenure systems, 25 allowed part-time faculty to get tenure and 76 allowed for extending the time to tenure. Allowable reasons to slow the tenure clock included medical leave (65), maternity leave (65), paternity leave (54), other leave of absence (59). Only 23 allowed part-time status as a reason to slow the tenure clock. Policies written by the dean's office and from schools in the midwest or west were more favorable to part-time faculty's being allowed to get tenure. Promotions. The majority of respondents reported that it was possible for part-time faculty to serve as clinical assistant, assistant, associate, and full professors. Benefits. The majority of schools offered retirement benefits and health, dental, disability, and life insurance to part-time faculty, although in many cases part-time faculty had to buy additional coverage to match that of full-time faculty. CONCLUSIONS: Most medical schools do not have policies that foster tenure for part-time faculty, although many allow for promotion and offer a variety of benefits to part-time faculty.

Employment↗

Socioeconomic considerations in childhood cancer survival. Society's obligations.

Children have the right to be given the opportunity to become responsible adults. But this right is not assured for children with cancer. They carry a stigma that is the basis for discrimination in education, in the armed services, in employment opportunities, and in the opportunity to receive fair treatment from health and life insurance companies. In this article, examples of discriminatory practices are reviewed, along with the steps being taken to alleviate the situation. The author emphasizes that the responsibility for correcting discrimination belongs to all groups in society--the government, families of children with cancer, and other private citizens--and suggests means by which citizens can end discrimination against cancer survivors.

Adult↗

Occupationally-sponsored, community-provided hypertension control.

A hypertension control program established by the Massachusetts Mutual Life Insurance Company in 1977 included education, on-site case finding, and referral to community physicians with a company-based follow-up system facilitated by assumption of all costs by the company. Ninety-eight percent (2, 463) of the employees were screened; 11% (277) had hypertension. Of these, 59% were in treatment and 36% were controlled at entry. More than 84% of the hypertensives accepted referral to care and 79% fulfilled all program requirements. By the fifth program years, 70% had achieved blood pressure control. Mean blood pressure declined from 150/93 to 142/88 mm Hg. Absenteeism for all hypertensives averaged 4.7 in the three years before and 5.7 during the four years of the program. Employees active in the program had fewer average days of absenteeism (4.7) than inactive participants (6.8). Modest cost and a favorable employee/physician response has made this a highly acceptable as well as an effective company health program.

Absenteeism↗

Classification of nutritional status in cystic fibrosis.

PURPOSE OF REVIEW: Nutritional status impacts on the progression of cystic fibrosis. Current guidelines recommend the use of anthropometric indicators to classify nutritional status and identify malnutrition. However, the current nutrition-classification systems are problematic. I summarize these problems and review recent progress in the development of evidence-based anthropometric criteria for classifying nutritional status in cystic fibrosis patients. RECENT FINDINGS: Percentage of ideal body weight as a malnutrition index is flawed. In children with cystic fibrosis, this index underestimates the severity of underweight in short patients and overestimates it in tall patients. In adults with cystic fibrosis, percentage of ideal body weight based on the Metropolitan Life Insurance reference weights for medium/large frames overestimates the severity of underweight. Body-mass-index percentile for children and body mass index for adults as underweight indices have been proven to be valid. Strong associations between body mass index and lung function are also observed, but cutoff values to maintain a desirable level of lung function can vary. SUMMARY: Body mass index should replace the use of percentage of ideal body weight for classifying underweight in cystic fibrosis patients. More research is needed to identify appropriate indicators to classify short stature in children with cystic fibrosis.

Adult↗

Implementation of cascade testing for the detection of familial hypercholesterolaemia.

PURPOSE OF REVIEW: Cascade testing is an important method for identifying individuals at risk of a genetic condition. Recent advances in its application to familial hypercholesterolaemia are reviewed to identify potential problems impeding its application and the extent to which current data address these concerns. RECENT FINDINGS: Different paradigms for cascade testing are being applied in national programmes. Current data demonstrates cost-effectiveness, and an increased uptake of preventive measures. The relationship between molecular and clinical diagnostic methods is discussed. Psychological impacts of a diagnosis of familial hypercholesterolaemia are in line with the risks associated with the disorder. The efficacy of statins in improving vascular function of children with familial hypercholesterolaemia has been demonstrated, but extensive safety data are lacking. Ethical arguments support that it is equally acceptable for relatives of familial hypercholesterolaemia patients to be contacted by healthcare workers as by family members, but the former is likely to be more efficient. Concerns about increased life insurance premiums are valid but insurance companies are assessing risk realistically, so this should not be a barrier to cascade testing. SUMMARY: Current data support the implementation of cascade testing for familial hypercholesterolaemia as being feasible and cost-effective, but national implementation is limited to a small number of countries. Funding and the infrastructure to support it may be the major stumbling blocks in implementing this technique in many countries. Concerns about the ethics of carrying out cascade testing, and the potential psychological damage of DNA testing, appear to have been largely addressed for familial hypercholesterolaemia.

Genetic Testing↗

Genetic diversity and disease susceptibility.

The range of genetic diversity within human populations is enormous. Genetic susceptibility to common chronic disease is a significant part of this genetic diversity, which also includes a variety of rare clear-cut inherited diseases. Modern DNA-based genomic analysis can now routinely lead to the identification of genes involved in disease susceptibility, provides the basis for genetic counselling in affected families, and more widely for a genetically targeted approach to disease prevention. This naturally raises problems concerning the use of information on an individual's decisions, but for employment, and health and life insurance.

Genetic Diseases, Inborn↗

Financial counseling for families of children with chronic disabilities.

A program to teach financial management skills to parents of children with chronic illnesses and disabilities was developed. To test the effectiveness of this program, a randomized, controlled prospective study was conducted of 115 families of children with spina bifida, 58 of whom received financial counseling while 57 served as controls. Significantly more frequent changes in behavior were found in the intervention group than in the control group at the end of the one-year study for 18 of the 68 variables, including such items as establishing records, using a budget, obtaining low-cost life insurance and taking appropriate tax deductions. Three-quarters of the families in the intervention group believe that the counseling program had had or would have a beneficial effect on the quality of their lives. Financial counseling may benefit families with chronically ill or disabled children.

Budgets↗

Limiting financial disincentives in live organ donation: a rational solution to the kidney shortage.

Availability of kidney transplantation is limited by an inadequate supply of organs, with no apparent remedy on the immediate horizon and increasing reliance on living donors (LDs). While some have advocated financial remuneration to stimulate donation, the National Organ Transplant Act (NOTA) of 1984 expressly forbids the offer of 'valuable consideration.' However, recent developments indicate some fluidity in the definition of valuable consideration while evolving international standards highlight deficiencies (particularly regarding long-term care and follow-up) in the current American system. Recognizing that substantial financial and physical disincentives exist for LDs, we propose a policy change that offers the potential to enhance organ availability as well as address concerns regarding long-term care. Donors assume much greater risk than is widely acknowledged, risk that can be approximated for the purpose of determining appropriate compensation. Our proposal offsets donor risk via a package of specific benefits (life insurance, health insurance and a small amount of cash) to minimize hazard and ensure donor interests are protected after as well as before nephrectomy. It will fund medical follow-up and enable data collection so that long-term risk can be accurately assessed. The proposal should be cost effective with only a small increase in the number of LDs, and the net benefit will become greater if removal of disincentives stimulates even further growth. As importantly, by directly linking compensation to risk, we believe it preserves the essence of kidney donation as a gift, consistent with NOTA and implementable in the United States without altering current legal statutes.

Costs and Cost Analysis↗

Development and evaluation of an information booklet for adult survivors of cancer in childhood. The United Kingdom Children's Cancer Study Group Late Effects Group.

AIMS: To determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet, and to investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours. SUBJECTS: Fifty survivors of childhood cancer (age range 14-32 years) who were consecutive attendees at a long term follow up clinic. METHODS: The booklet was developed for young people aged 14 years and above by the United Kingdom Children's Cancer Study Group Late Effects Group. Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, offered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivor's understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors' general reaction to the booklet, whether it increased knowledge and influenced health related behaviours. RESULTS: All those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05). CONCLUSIONS: These results suggest that written information is likely to be an acceptable and effective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics.

Adolescent↗

Obesity and smoking habits.

A large-scale survey of steel workers in South Wales has shown a considerable difference between the body weights of smokers and of non-smokers. The difference increases with age so that men over 40 years who have never smoked are on average 13 lb (5.9 kg) heavier than smokers. Even so, smokers are about 15 lb (6.8 kg) heavier than the weight standard considered desirable by the Metropolitan Life Insurance Company, while non-smokers are nearly 30 lb (13.6 kg) heavier.About 20% of the men are attempting to give up the smoking habit. Ex-smokers who have given up smoking for more than eight years approach the body weight of men of the same age who have never smoked.Many reports have been published on the health consequences of smoking and of obesity. Because smoking and obesity are inversely related studies of the interrelation of these two health hazards and of their relative importance are needed.

Adult↗

A highly accurate, low cost test for BRCA1 mutations.

The hereditary breast and ovarian cancer syndrome is associated with a high frequency of BRCA1 mutations. However, the widespread use of BRCA1 testing has been limited to date by three principal concerns: the fear of loss of health and life insurance, the uncertain clinical value of a positive test result, and the current lack of an inexpensive and sensitive screening test for BRCA1 mutations. We have developed an inexpensive system for gene mutational scanning, based on a combination of extensive multiplex PCR amplification and two dimensional electrophoresis. The efficiency of this system, as a screening test for BRCA1 mutations, was evaluated in a panel of 60 samples from high risk women, 14 of which contained a previously identified mutation in BRCA1. All 14 mutations were identified, as well as an additional five that had previously escaped detection. In addition to the 19 mutations, a total of 15 different polymorphic variants were scored, most of which were recurring. All were confirmed by nucleotide sequencing. The cost of screening per sample was calculated to be approximately US$70 for the manual technique used in this study, and may be reduced to approximately US$10 with the introduction of commercially available PCR robotics and fluorescent imaging. Implementation of this method of mutation screening in the research and clinical setting should permit rapid accrual of quantitative data on genotype-phenotype associations for the evaluation of diagnostic testing.

Breast Neoplasms↗

Attitudes about genetics in underserved, culturally diverse populations.

OBJECTIVE: New medical discoveries regarding genetic susceptibility to common chronic diseases, and the decoding of the human genome have increased public attention to genetics. What information is understood and what attitudes exist towards genetics and genetic research have not been well examined in underserved, culturally diverse communities. METHODS: To better understand attitudes and beliefs towards genetics and genetic testing in these groups, we conducted eight focus groups with 55 patients and health care workers in New York City and Westchester, N.Y., in English, Spanish, and Chinese. RESULTS: Focus group participants had limited understanding about genetics or genetic testing. Newborn screening was the least-known genetic issue, even among health care workers. Regardless of their cultural group, most participants expressed a desire for more information about genetics and genetic tests. Latinos and Chinese participants generally expressed positive attitudes towards genetic studies and genetic testing, with the possibility of preventing diseases cited as the main advantage. Black Americans and Non-Hispanic Whites reported mixed feelings about genetic research and genetic testing. Concerns expressed included: anxiety before receiving test results or waiting for a disease to develop, fear of genetic discrimination by health and life insurance companies and employers, not having the financial means to deal with genetic diseases in themselves or a sick child, concern that children and adults are having too many tests. Black Americans expressed the most concern for possibly harmful use of genetic information. CONCLUSIONS: Minority populations of diverse cultures have limited knowledge about genetics and genetic testing, would like to have more information, and are not well reached by the current educational approaches. Participants knew the least about newborn screening, a test that is mandatory in the New York State. While genetic knowledge by minority populations was perhaps not different from the level of knowledge of consumers in general, minority populations are at particular risk of being left behind because of historically poor access to information and services.

Adult↗

Prediction of the normal blood volume. Relation of blood volume to body habitus.

Predictions of blood volume (BV) assume the existence of a constant ratio between BV and body weight or surface area (SA). We examined the validity of this assumption by calculating BV from plasma volume and body hematocrit in 160 normal volunteers whose weights ranged from -38.7 to 210.8% of desirable weight (assessed by a modification of the Metropolitan Life Insurance Company Desirable Weight tables). BV is not a constant fraction of body weight or SA in this population. Its prediction from such constant ratios results in a large error of estimate which is systematically biased with respect to height and weight. BV prediction from the observed regressions of the parameter on weight and SA reduces the error substantially but remains biased with respect to height. BV prediction from the subject's degree of deviation from desirable weight affords a smaller error of estimate which is apparently free from systematic bias.

Adult↗

Higher risk of cardiovascular mortality among lean hypertensive individuals in Tecumseh, Michigan.

BACKGROUND: A cohort of 2181 men and women, aged 40 to 79 years, without evidence of coronary heart disease or cancer at entry to the Tecumseh Study was evaluated. METHODS AND RESULTS: Subjects were defined as lean if their Metropolitan Life Insurance table relative weight was < 110 (n = 584) and as obese if their relative weight was > or = 120 (n = 1024). There were 688 subjects with hypertension at study entry (systolic blood pressure > or = 160, diastolic blood pressure > or = 95, or treated). The 29-year relative risk (RR) of mortality from ischemic heart disease (IHD) or cardiovascular disease (CVD) associated with systolic blood pressure level was significant for both lean and obese subjects. Among hypertensive subjects, the RR of fatal IHD for lean versus obese hypertensive subjects was 1.87 (95% confidence interval, 1.21 to 2.88) and the RR of fatal CVD was 1.56 (95% confidence interval, 1.10 to 2.20) using a Cox proportional-hazards model to adjust for the independent effects of age and traditional CVD risk factors. The findings are consistent with other studies in men showing lean hypertensive subjects to be at greater risk of IHD or CVD mortality than obese hypertensive subjects. A similar finding is now observed in women. CONCLUSIONS: Associations do not prove causality or dictate management. Nevertheless, the unexplained higher mortality in lean versus obese hypertensive subjects has now been reported with sufficient frequency to suggest that the association is real (if unexplained). Determining the reasons for this association may improve targeted prevention and treatment strategies.

Adult↗

Tumor necrosis factor-alpha levels and weight loss in chronic obstructive pulmonary disease.

Unexplained weight loss is common in chronic obstructive pulmonary disease (COPD). Blood levels of tumor necrosis factor-alpha (TNF-alpha), a cytokine causing cachexia in laboratory animals, are elevated in various human diseases associated with weight loss. We therefore prospectively measured TNF-alpha serum levels (immunoradiometric assay) in patients with clinically stable COPD (n = 30; all male; mean age, 65 yr) whose weight was less (Group I; n = 16) or more (Group II; n = 14) than the lower limit of normal taken from Metropolitan Life Insurance Company tables. The patients had no cause known to elevate TNF-alpha serum levels; notably, they were not infected. Group I patients had unintentionally lost weight during the previous year, whereas the weight of Group II patients had not changed during the same period. The two groups had similar chronic airflow obstruction and arterial blood gas impairment; hyperinflation and reduction in diffusing capacity were more pronounced in Group I, but differences were not significant. TNF-alpha serum levels (pg/ml; mean [SD]) were significantly higher in Group I than in Group II (70.2 [100.0] versus 6.7 [6.4]; p < 0.001). Group II TNF-alpha serum levels did not differ significantly from those of healthy subjects (7.8 [3.9]), whereas those of Group I were significantly higher (p < 0.001). Because renal function was in the normal range, we conclude that increased TNF-alpha production--and not decreased TNF-alpha clearance--is a likely cause of weight loss in patients with COPD.

Aged↗