To determine whether persons with melanoma were integrated into the health care system prior to diagnosis. Population-based survey by mailed questionnaire. 216 persons with malignant melanoma diagnosed in Massachusetts in 1986. Of the 216... more
To determine whether persons with melanoma were integrated into the health care system prior to diagnosis. Population-based survey by mailed questionnaire. 216 persons with malignant melanoma diagnosed in Massachusetts in 1986. Of the 216 cases, 87% stated that they had regular physicians, 63% had seen those physicians in the year prior to diagnosis, but only 20% had regular dermatologists. Overall, only 24% had examined their own skin prior to diagnosis and 20% reported physician skin examinations. Persons diagnosed with melanoma reported extensive contact with regular physicians in the year prior to diagnosis. However, most of these persons neither received skin examinations nor examined their own skin during that time. While additional study is necessary to confirm these findings, the authors suggest that physicians caring for patients at risk for melanoma integrate melanoma screening into routine care.
Research Interests: General Internal Medicine, Dermatology, Humans, General, Health Services, and 18 moreFemale, Melanoma, Male, Physicians, Massachusetts, Risk factors, Clinical Sciences, Middle Aged, Questionnaires, Malignant Melanoma, Adult, Health Care System, Time Factors, Physical examination, Breast Self Examination, Patient Participation, Risk Factors, and Skin Neoplasms
Research Interests: Humans, United States, Melanoma, Male, Incidence, and 5 moreAged, Middle Aged, Adult, Cross Sectional Studies, and Skin Neoplasms
Since 1973, death rates for malignant melanoma (International Classification of Diseases, Ninth Revision, codes 172.0-172.9) have increased in the United States and other countries; this increase has occurred disproportionately among... more
Since 1973, death rates for malignant melanoma (International Classification of Diseases, Ninth Revision, codes 172.0-172.9) have increased in the United States and other countries; this increase has occurred disproportionately among white men. To develop hypotheses on the etiology of this increase, the Boston University Schools of Medicine and Public Health and CDC reviewed data from the Surveillance, Epidemiology, and End Results (SEER) Program for the National Cancer Institute and other existing databases. This report summarizes patterns of malignant melanoma among whites in the United States from 1973 through 1988 and suggests possible causes for these patterns.
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Melanoma is external and potentially detectable by many persons but little is known about who first discovers these lesions. An understanding of discovery patterns can shape future public and professional education programs. Our purpose... more
Melanoma is external and potentially detectable by many persons but little is known about who first discovers these lesions. An understanding of discovery patterns can shape future public and professional education programs. Our purpose was to assess patterns of melanoma discovery and to determine the patients' role in finding their own lesions. With a written, mailed questionnaire, we conducted a population-based statewide survey of 216 incident cases of melanoma in Massachusetts. Approximately half (53%) of melanomas were self-discovered, whereas the remainder were detected by medical providers (26%), family members (17%), and others (3%). Nearly one third of persons said they could not see their own lesions easily. Compared with men, women were more likely to discover their own lesions (66% vs 42%, p = 0.001) and those on their spouses (23% vs 2%, p less than 0.001). Improving early detection and reducing mortality of melanoma will require both public and professional education programs, with particular emphasis on targeting men at highest risk of this disease.
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Research biobanks collect biologic samples and health information. Previous work shows that biobank participants desire general study updates, but preferences about the method or frequency of these communications have not been explored.... more
Research biobanks collect biologic samples and health information. Previous work shows that biobank participants desire general study updates, but preferences about the method or frequency of these communications have not been explored. Thus, we surveyed participants in a long-standing research biobank. Eligible participants were drawn from a study of patients with personal/family history suggestive of Cowden syndrome, a poorly recognized inherited cancer syndrome. Participants gave blood samples and access to medical records and received individual results but had no other study interactions. The biobank had 3,618 participants at sampling. Survey eligibility included age ≥18 years, enrollment within the biobank's first 5 years, normal PTEN analysis, and contiguous U.S. address. Multivariate logistic regression analyses identified predictors of participant interest in Internet-based versus offline methods and methods allowing participant-researcher interaction versus one-way com...
To explore women's opinions about the use of noninvasive prenatal testing (NIPT) to assess the risk of sex chromosome aneuploidies and microdeletion syndromes. Focus groups were conducted with women who were currently pregnant or had... more
To explore women's opinions about the use of noninvasive prenatal testing (NIPT) to assess the risk of sex chromosome aneuploidies and microdeletion syndromes. Focus groups were conducted with women who were currently pregnant or had recently delivered. Qualitative analysis using interpretive description was used to generate study findings. Thirty-one women (mean age 32.4 years) participated in the focus groups. Participants were unfamiliar with sex chromosome aneuploidies but expressed support for the use of NIPT to detect these conditions. Participants were uncertain about the utility and actionability of receiving information about microdeletion syndromes with variable or unknown phenotypic expression. Participants voiced their desire to be informed of all conditions assessed by NIPT prior to testing. They considered clinicians to be the key provider of such information, although stated that patients have a responsibility to be knowledgeable prior to testing in order to suppo...
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Families' understanding of brain death may be a factor that contributes to decisions regarding organ donation. To examine factors related to families' understanding of brain death and how those factors affect families'... more
Families' understanding of brain death may be a factor that contributes to decisions regarding organ donation. To examine factors related to families' understanding of brain death and how those factors affect families' decisions about organ donation. Chart reviews were conducted on all deceased patients at 9 trauma hospitals. Interviews were then conducted with healthcare providers who spoke with families about organ donation and family decision makers. Southwest Pennsylvania and Northeast Ohio. The sample consisted of 403 families of organ donor-eligible patients who reported that someone at the hospital told them the patient was brain dead. Families' awareness of brain-death testing procedures, understanding of brain death, and donation decision. Most families (96%) were told their family member was brain dead, but only 28.3% were able to provide a completely correct definition of brain death. No association between the definition of brain death and willingness to ...
Research Interests: Nursing, Decision Making, Family, Adolescent, Brain Death, and 13 moreHumans, Child, Female, Male, Infant, Pennsylvania, Newborn Infant, Ohio, Aged, Middle Aged, Questionnaires, Adult, and Analysis of Variance
The goal of the computer program Adjuvant! is to allow health professionals and their patients with early breast cancer to make more informed decisions about adjuvant therapy. Actuarial analysis was used to project outcomes of patients... more
The goal of the computer program Adjuvant! is to allow health professionals and their patients with early breast cancer to make more informed decisions about adjuvant therapy. Actuarial analysis was used to project outcomes of patients with and without adjuvant therapy based on estimates of prognosis largely derived from Surveillance, Epidemiology, and End-Results data and estimates of the efficacy of adjuvant therapy based on the 1998 overviews of randomized trials of adjuvant therapy. These estimates can be refined using the Prognostic Factor Impact Calculator, which uses a Bayesian method to make adjustments based on relative risks conferred and prevalence of positive test results. From the entries of patient information (age, menopausal status, comorbidity estimate) and tumor staging and characteristics (tumor size, number of positive axillary nodes, estrogen receptor status), baseline prognostic estimates are made. Estimates for the efficacy of endocrine therapy (5 years of tam...
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To determine whether persons with melanoma were integrated into the health care system prior to diagnosis. Population-based survey by mailed questionnaire. 216 persons with malignant melanoma diagnosed in Massachusetts in 1986. Of the 216... more
To determine whether persons with melanoma were integrated into the health care system prior to diagnosis. Population-based survey by mailed questionnaire. 216 persons with malignant melanoma diagnosed in Massachusetts in 1986. Of the 216 cases, 87% stated that they had regular physicians, 63% had seen those physicians in the year prior to diagnosis, but only 20% had regular dermatologists. Overall, only 24% had examined their own skin prior to diagnosis and 20% reported physician skin examinations. Persons diagnosed with melanoma reported extensive contact with regular physicians in the year prior to diagnosis. However, most of these persons neither received skin examinations nor examined their own skin during that time. While additional study is necessary to confirm these findings, the authors suggest that physicians caring for patients at risk for melanoma integrate melanoma screening into routine care.
Research Interests: General Internal Medicine, Dermatology, Humans, General, Health Services, and 18 moreFemale, Melanoma, Male, Physicians, Massachusetts, Risk factors, Clinical Sciences, Middle Aged, Questionnaires, Malignant Melanoma, Adult, Health Care System, Time Factors, Physical examination, Breast Self Examination, Patient Participation, Risk Factors, and Skin Neoplasms
The objective of this study is to examine the reasoning behind donation decisions of donor-eligible patients' next-of-kin.... more
The objective of this study is to examine the reasoning behind donation decisions of donor-eligible patients' next-of-kin. Cases were identified through chart review at hospitals in Ohio and Pennsylvania. Family decision makers of donor-eligible patients (N = 420) were interviewed to understand decisions regarding organ donation. Responses to inquiries regarding donation decisions were recorded verbatim and then categorized into major themes. Patterns of reasons to donate or not were examined to identify trends. Logistic regression was employed to explore the associations between decision-maker characteristics and donation decision. Most families gave more than one reason for their decision. Respondents who chose to donate most frequently mentioned altruistic reasons for their decision (78%). However, this response was almost never provided as a single reason. Seventy-five percent of families attributed the decision to the patient's explicit communication of a desire to donate. The belief that the patient did not want to donate was cited by 51% of families who did not donate; 36% of these families cited this as the sole reason for not donating. Concerns about disfigurement and feelings of emotional exhaustion also played a significant role. Reasons to donate or not are complex. Altruism, although important, does not seem to be sufficient to motivate organ donation. Knowing patient's preferences was a stronger influence overall. Moreover, certain reasons were highly correlated with each other. Supportive emotional care for the family and reassurance and information about the donation process are indicated as important issues to address to encourage donation.
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Although many probiotic products are currently available in yogurt or pill form in the United States (US), there is uncertainty surrounding the structure of regulation of these products. As more therapeutic probiotics are developed,... more
Although many probiotic products are currently available in yogurt or pill form in the United States (US), there is uncertainty surrounding the structure of regulation of these products. As more therapeutic probiotics are developed, changes to existing regulatory process in the United States may be required to meet the needs of patients and users in the population. This study examined how patients with chronic gastrointestinal (GI) diseases view the regulation of probiotics. We conducted a multi-site qualitative study consisting of focus groups of patients with chronic gastrointestinal diseases at three tertiary hospitals: at [institutions removed for blinded review]. We conducted 22 focus groups with 136 patients with major gastrointestinal (GI) diseases between March and August 2009. Participants were not familiar with the existing regulation of probiotic products but wanted assurances of accurate labelling of strain as well as safety. Participants raised concerns that regulation of probiotics might be accompanied by greater costs, reduced access and increased involvement of pharmaceutical companies. Although participants voiced significant doubt of government regulators, they felt that products containing genetically modified probiotic strains should have oversight comparable to that of pharmaceutical drugs. If GI patient perspectives are indicative of public perceptions of therapeutic probiotics in the United States, consumers may expect more rigorous regulation in the future while simultaneously wanting low costs, easy access and low involvement of pharmaceutical companies. Manufacturers, translational scientists, clinicians and regulators should be sensitive to consumer attitudes when designing, testing and regulating new therapeutic probiotics.
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... Attitude Donated Refused Organ donation helps families to grieve*** 70.2 42.0 Organ donation makes something positive come out of death*** 94.1 84.7 ... 81.1 69.4 *p 0.05; **p 0.01; ***p 0.001. Laura A. Siminoff and Mary Beth Mercer... more
... Attitude Donated Refused Organ donation helps families to grieve*** 70.2 42.0 Organ donation makes something positive come out of death*** 94.1 84.7 ... 81.1 69.4 *p 0.05; **p 0.01; ***p 0.001. Laura A. Siminoff and Mary Beth Mercer 384 Page 9. Conclusions ...