Health Heritage© a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity.

A detailed family health history is currently the most potentially useful tool for diagnosis and risk assessment in clinical genetics. We developed and evaluated the usability and analytic validity of a patient-driven web-based family health history collection and analysis tool. Health Heritage(©) guides users through the collection of their family health history by relative, generates a pedigree, completes risk assessment, stratification, and recommendations for 89 conditions. We compared the performance of Health Heritage to that of Usual Care using a nonrandomized cohort trial of 109 volunteers. We contrasted the completeness and sensitivity of family health history collection and risk assessments derived from Health Heritage and Usual Care to those obtained by genetic counselors and genetic assessment teams. Nearly half (42%) of the Health Heritage participants reported discovery of health risks; 63% found the information easy to understand and 56% indicated it would change their health behavior. Health Heritage consistently outperformed Usual Care in the completeness and accuracy of family health history collection, identifying 60% of the elevated risk conditions specified by the genetic team versus 24% identified by Usual Care. Health Heritage also had greater sensitivity than Usual Care when comparing the identification of risks. These results suggest a strong role for automated family health history collection and risk assessment and underscore the potential of these data to serve as the foundation for comprehensive, cost-effective personalized genomic medicine.

Ethical considerations in research with bereaved families.

This article describes a research project aimed at delivering an intervention to bereaved family members living in the community. The issues covered are access to subjects, recruitment and retention of subjects, and random assignment to control and experimental groups.

Knowledge about breast cancer risk factors and hereditary breast cancer among early-onset breast cancer survivors.

Little is known about knowledge levels regarding hereditary breast cancer among breast cancer survivors. This study explored, among women with early-onset breast cancer (<50 years): 1) knowledge regarding breast cancer risk factors and hereditary breast cancer; and 2) differences in knowledge based on risk for hereditary disease. Participants recruited from 34 Virginia hospitals responded to two questionnaires. The Family History Questionnaire assessed risk for hereditary breast cancer. The Knowledge, Attitudes, and Beliefs Questionnaire evaluated knowledge of general breast cancer risk factors and hereditary breast cancer. Of 314 respondents, 273 (87%) returned both questionnaires. A total of 137 (52%) participants met the study's criteria for hereditary breast cancer risk. Most participants knew common breast cancer-associated risk factors, including family history of breast cancer. Only 35% recognized family history of non-breast malignancies as a risk factor for breast cancer. Most participants recognized that prophylactic mastectomy does not eliminate breast cancer risk (63%), that not all women carrying a mutation develop disease (73%), and that men can develop breast cancer (96%). The majority selected 'I don't know' for knowledge of several characteristics of hereditary breast cancer, including: early-onset disease (54%); multifocal or bilateral disease (62%); risk transmission through fathers (58%); association with other cancer types (61%); and male breast cancer (70%). Knowledge regarding hereditary breast cancer did not vary between women with suspected hereditary disease and those with presumed sporadic disease. These data highlight the need for information regarding hereditary breast cancer for early-onset breast cancer survivors.

Factors influencing patients' decisions to decline cancer genetic counseling services.

Little is known about the factors influencing patients' decisions about whether to utilize cancer genetic counseling services. The purpose of this study is to identify potential barriers to broad utilization of such services. Of a total of 136 decliners of cancer genetic counseling services at our institution, 117 were deemed eligible to participate. Of these, 73 were randomly selected for study. A total of 37/73 (51%) agreed to participate in a semistructured telephone survey designed to assess the factors that impacted their decisions to decline cancer genetic counseling. An interview script, composed of both closed- and open-ended questions was used to direct the survey. Interviews were audiotaped. Responses to open-ended questions were content analyzed. Of the participants, 34 were female and 36 were Caucasian. Seventy-two percent of the participants were between ages 36 and 55 years. Participants cited the following reasons for choosing not to proceed with cancer genetic counseling: concern over health insurability for self or family (n=15); cost (n=12); emotional impact on self or family (n=11); no perceived benefit (n=11); and time commitment (n=9). These data provide an understanding of patient's attitudes and concern impacting their decisions to decline cancer genetic counseling. This information provides guidance for the development of interventions designed to limit barriers among patients referred for such services.

PRISM: Priority Symptom Management Project phase I: assessment.

PURPOSE/OBJECTIVES: To provide an overview of the process, goals, and outcome recommendations from the assessment phase of the Oncology Nursing Society's Priority Symptom Management (PRISM) project and to provide the foundation for a series of evidence-based practice and qualitative systematic review articles generated from the first phase of PRISM. DATA SOURCES: Published articles, abstracts, and books; computerized databases; nonpublished research; personal communications; and proceedings of the PRISM summit meeting. DATA SYNTHESIS: Symptom management is a key component in quality cancer care. The assessment phase of PRISM yielded systematic reviews with an evidence-based framework to evaluate key symptoms, developed a framework for teaching and evaluating other symptoms, and recommended future ONS initiatives. CONCLUSIONS: Outcome recommendations from the PRISM summit targeted practice; professional and public education; research; and health policy. IMPLICATIONS FOR NURSING PRACTICE: These activities provide background for subsequent evidence-based practice and qualitative systematic review articles that will focus on cancer symptom management.

Fatigue and quality of life outcomes of exercise during cancer treatment.

PURPOSE: Despite the recognition of fatigue as a common and distressing symptom during cancer treatment, there are few evidence-based interventions available to manage such fatigue. The purpose of this multi-institutional pilot study was to explore the effects of a home-based moderate walking exercise intervention on fatigue, physical functioning, emotional distress, and quality of life (QOL) during breast cancer treatment. DESCRIPTION OF STUDY: Fifty-two women were recruited from five university hospital outpatient departments for this pilot study with an experimental design. Subjects were randomly assigned to the walking program or to usual care during adjuvant chemotherapy or radiation therapy for breast cancer. Symptoms, physical functioning, and QOL were measured at baseline, midtreatment, and at the end of treatment. RESULTS: Women who exercised at least 90 minutes per week on 3 or more days reported significantly less fatigue and emotional distress as well as higher functional ability and QOL than women who were less active during treatment. CLINICAL IMPLICATIONS: A home-based walking exercise program is a potentially effective, low-cost, and safe intervention to manage fatigue and to improve QOL during adjuvant chemotherapy or radiation therapy for breast cancer. This health-promoting self-care activity needs further testing in large randomized clinical trials.

Research and oncology nursing practice.

OBJECTIVE: To trace the evolution of oncology nursing research and to discuss its contribution to oncology nursing practice and health care. DATA SOURCES: Articles, textbooks, organizational documents, conference proceedings, and personal communication. CONCLUSIONS: Placing research in perspective will help suggest where we should go as a nursing specialty to provide excellent cancer care to patients, families, communities, and populations. It will also suggest directions for research priorities and for conceptual, methodologic, and health policy activities. IMPLICATIONS FOR NURSING PRACTICE: To influence oncology care, it is essential that oncology nurse researchers be responsive to trends that are relevant to both the conduct and utilization of oncology nursing research.

A prospective randomized trial of four three-drug regimens in the treatment of disseminated Mycobacterium avium complex disease in AIDS patients: excess mortality associated with high-dose clarithromycin. Terry Beirn Community Programs for Clinical Research on AIDS.

The optimal regimen for treatment of Mycobacterium avium complex (MAC) disease has not been established. Eighty-five AIDS patients with disseminated MAC disease were randomized to receive a three-drug regimen of clarithromycin, rifabutin or clofazimine, and ethambutol. Two dosages of clarithromycin, 500 or 1,000 mg twice daily (b.i.d.), were compared. The Data and Safety Monitoring Board recommended discontinuation of the clarithromycin dosage comparison and continuation of the rifabutin vs. clofazimine comparison. After a mean follow-up of 4.5 months, 10 (22%) of 45 patients receiving clarithromycin at 500 mg b.i.d. had died (70 deaths per 100 person-years) compared with 17 (43%) of 40 patients receiving clarithromycin at 1,000 mg b.i.d. (158 deaths per 100 person-years) (relative risk, 2.43; 95% confidence interval, 1.11-5.34; P = .02). After 10.4 months, 20 (49%) of 41 patients receiving rifabutin had died (81 deaths per 100 person-years) compared with 23 (52%) of 44 patients receiving clofazimine (94 deaths per 100 person-years) (relative risk, 1.20; 95% confidence interval, 0.65-2.19; P = .56). Bacteriologic outcomes were similar among treatment groups. In treating MAC disease in AIDS patients, the maximum dose of clarithromycin should be 500 mg b.i.d.

Establishing mechanisms to conduct multi-institutional research--fatigue in patients with cancer: an exercise intervention.

PURPOSES/OBJECTIVES: To describe the process of establishing a multi-institutional interdisciplinary team of oncology researchers and conducting a pilot study of an exercise intervention for fatigue. DATA SOURCES: Project meeting minutes and records, research team members' logs, subjects' research records, the research study proposal, and team members' individual and collective shared experiences. DATA SYNTHESIS: Site investigators established research teams at five academic medical centers. Fifty subjects were enrolled in the study and tested during their cancer treatment. Study methods, including instrumentation, were evaluated carefully and revised. CONCLUSIONS: The multi-institutional network of researchers is an effective and efficient model for testing an intervention to manage fatigue during cancer treatment. IMPLICATIONS FOR NURSING PRACTICE: Exercise is a feasible and potentially beneficial intervention to combat distressing cancer treatment-related fatigue. A pilot study is essential to determine the best methods for conducting a clinical trial and to develop the teams of researchers necessary for such a project.

Barriers to research utilization for oncology staff nurses and nurse managers/clinical nurse specialists.

PURPOSE/OBJECTIVES: To describe and compare barriers to research utilization faced by oncology staff nurses and nurse managers/clinical nurse specialists (CNSs) and to compare these to barriers identified by other nurses. DESIGN: Exploratory descriptive. SETTING: National. SAMPLE: Proportional random sample of 2,000 Oncology Nursing Society (ONS) staff nurses (n = 769) from seven practice settings. ONS participants recruited oncology staff nurses (n = 331) and nurse managers/CNSs involved in cancer care (n = 407). METHODS: Mailings, including a demographic questionnaire and Barriers Scale, were sent to ONS nurses, and reminder postcards were sent to increase the return rate. MAIN RESEARCH VARIABLES: Barrier categories: characteristics of the adopter (nurse), organization, innovation (research itself), and communication, individual item barriers. Nurse and worksite characteristics. FINDINGS: Differences existed in oncology nurses' perceptions of the extent to which the adopter, organization, and innovation characteristics served as obstacles to research utilization. Nurse managers/CNSs perceived that each of these acted as a greater barrier than did staff nurses. Both groups perceived communication characteristics as a moderate barrier. Oncology nurses, as a group, responded similarly to other nurse samples regarding research and communication characteristics. Perceptions of oncology nurse managers/CNSs were similar to those of administrators in other studies. Oncology staff nurses rated barriers lower than nurses, including clinicians, in other samples. CONCLUSIONS: For oncology nurses, organization, research, and communication barriers persist as impediments to research utilization. Nurse adopter characteristics may be diminishing as obstacles for staff nurses but not for nurse managers/CNSs. The decreased strength that oncology nurses attributed to barriers may reflect a benefit of practicing nursing in a specialty. IMPLICATIONS FOR NURSING PRACTICE: Decreasing known barriers would facilitate research-based practice in oncology. Nurse leaders can create environments conducive to research utilization by altering existing mechanisms, facilitating access to nursing research experts, supporting time for research utilization efforts, giving authority for practice changes, and offering continuing education related to research utilization processes. Nurse managers/CNSs need to increase their familiarity with research and research utilization, ensuring their awareness of pertinent clinical findings. Perceptual gaps between staff nurses and nurse managers/CNSs regarding research utilization require discussion and formal investigation. Researchers must communicate in clinician-friendly ways. All nurses need to demand and facilitate access to research findings.

Body composition in clinically stable men with HIV infection.

Clinically stable HIV-infected men (N = 106) receiving investigational antiretrovirals were recruited. Subjects were divided into three HIV disease severity groups by CD4+ cell count. Standard measures of body composition were assessed, as well as serum measures of visceral protein stores and kilocalorie intake. Group 1 subjects (CD4+ T cells < 200) had significantly lower measures of body fat as compared with Group 2 (CD4 between 200 and 600) and Group 3 (CD4 > 600) despite adequate kilocalorie intake. Group 2 and Group 3 were not significantly different from each other. Our entire cohort had significantly lower muscle mass compared to norms. Our data demonstrate that people with advanced HIV disease have reduced muscle and fat.

Use of research-based practices by oncology staff nurses.

PURPOSE/OBJECTIVES: To determine the extent to which oncology staff nurses adopted eight specific research-based practices and the impact of demographic and resource factors on adoption of these practices. DESIGN: Cross-sectional mail survey. SETTING: National. SAMPLE: 1,100. METHODS: Network sampling techniques: 2,000 Oncology Nursing Society (ONS) staff nurses were randomly and proportionally selected from seven practice setting categories; each ONS nurse was asked to recruit a non-ONS staff nurse colleague. Both groups completed the Oncology Nursing Practice Questionnaire, which measures adoption of eight research-based practices. MAIN RESEARCH VARIABLES: Extent of adoption, including awareness, persuasion, and implementation of eight specific practices; nurse demographics; and work-related resources. FINDINGS: Awareness was high, with 53%-96% of nurses reporting awareness of the eight practices. Overall, 28% were aware of all practices while 10% were aware of half or fewer. Less-aware nurses differed from other nurses in demographics and resources. Computed "extent of adoption" scores showed that almost 90% of aware nurses used seven of the practices at least sometimes. CONCLUSIONS: Oncology staff nurses with awareness of a practice were implementing the practice in their organization. IMPLICATIONS FOR NURSING PRACTICE: The findings establish a need for developing educational programs to enhance awareness of specific practices and to creatively reach nurses who are unlikely to seek programs outside their employing agencies.

Investigating chronic symptoms in HIV: an opportunity for collaborative nursing research.

Because of improved life expectancy for people with HIV infection, today's clinician needs to understand and manage chronic symptoms that limit function and quality of life. The authors describe two collaborative HIV symptom-management studies conducted by the Division of Intramural Research of the National Institute of Nursing Research. Studies such as these are necessary to provide nurses and other healthcare personnel with the knowledge essential for appropriate, comprehensive, and quality patient care.

Early features of zidovudine-associated myopathy: histopathological findings and clinical correlations.

Zidovudine-induced myopathy is characterized by reversible muscle weakness, wasting, myalgia, fatigue, and elevated creatine kinase (CK). Some zidovudine-treated patients with normal muscle strength experience excessive fatigue, myalgia, or transient mild CK elevations that improve when zidovudine is stopped. To determine the cause of these symptoms, we studied 13 physically fit, HIV-infected men who developed fatigue, myalgia, and reduced endurance, while taking zidovudine for a mean period of 20 months (2-39 months), with neurological evaluation and muscle biopsy processed for enzyme histochemistry and electron microscopy (EM). All subjects had normal muscle strength. In 6 of the 13 patients, muscle biopsies were normal by enzyme histochemistry. EM, however, demonstrated proliferation of normal or abnormal mitochondria, and increased amounts of lipid, glycogen, and lipofuscin. Electromyographic (EMG) studies (5/5) and serum CK (6/6) were normal. The other 7 individuals had signs of moderate to severe mitochondrial abnormalities shown by both light microscopy and EM, characterized by severe destruction, vacuolization, and rare paracrystalline inclusions. Most had elevated CK (4 out of 7) and normal EMG (5 out of 7). The severity of morphological abnormalities did not correlate with duration of HIV infection, zidovudine therapy, or zidovudine dosage. We conclude that in zidovudine-treated patients, symptoms of fatigue, myalgia, reduced endurance, and exercise intolerance represent early signs of zidovudine-induced mitochondriotoxicity, which causes an energy shortage within the muscle fibers even when muscle strength is still normal. Zidovudine, a DNA chain terminator, results in overt myopathy when a critical threshold of molecular, histological, and biochemical dysfunction of mitochondria is crossed, which seems to vary between individuals.

A comparison of calculated energy requirements to measured resting energy expenditure in HIV-1-infected subjects.

Twenty HIV-infected outpatients participating in clinical drug trials of the National Institute of Allergy and Infectious Diseases (NIAID) and enrolled in the collaborative National Institute of Nursing Research (NINR) nutrition study underwent indirect calorimetry measurements. Energy requirements for these subjects also were calculated using the Harris Benedict Equation (HBE). In all 20 subjects, the calculated energy requirements underestimated actual resting expenditure as determined by indirect calorimetry.

Disseminating research: writing abstracts.

Disseminating research findings is a critical step in making research useful. Careful preparation of abstracts allows investigators the opportunity to communicate their findings effectively to other healthcare professionals. This paper presents criteria developed by the Association of Nurses in AIDS Care (ANAC) Research Committee to be used in reviewing research abstracts for future ANAC conferences. Content of abstracts and ideas for abstract development are provided, along with a brief analysis of the reviews of research abstracts submitted for the 1992 ANAC Annual Conference.

Evolving a blueprint for certification: the responsibilities and knowledge comprising American professional oncology nursing practice.

Ensuring adequate content validity of a certification examination is a major concern in the development and administration of a test. To establish content validity of the Oncology Nursing Certification Corporation (ONCC) certification exam, a job analysis study was conducted to provide empirical data about the responsibilities and knowledge areas required for practice at the level of the newly certified oncology nurse. The study involved The Profession of Oncology Nursing: An Inventory of Responsibilities and Knowledge (IRKPON), a questionnaire that was developed based on a review of the literature, professional practice information, interviews with oncology nurses, the original ONCC certification exam table of specifications, and evaluations undertaken by two advisory committees. The IRKPON consisted of three parts: 56 responsibilities clustered into eight job dimensions, 217 knowledge areas grouped into seven knowledge dimensions, and demographic information. The IRKPON was sent to a stratified random sample of 3,000 oncology nurses in the United States, who were asked to rate both the responsibilities and knowledge areas by level of importance. The 1,297 (43%) responding nurses rated 45 of 56 responsibilities (80.4%) as "very important" and 8 of 56 responsibilities (14.3%) as "extremely important"; they also rated 163 of 217 knowledge areas (75.1%) as "very important" and 41 of 217 knowledge areas (18.9%) as "extremely important." These findings identified the specific responsibilities most important to the oncology nurse role at the level of the newly certified nurse, as well as the knowledge areas necessary for competent performance. Subsequent ONCC certification examinations were modified; the test blueprint that guides the construction of the examination was revised, and the passing score was adjusted.

Effective head and neck tumor markers. The continuing quest.

To evaluate the clinical value of two serologic tumor markers, squamous cell carcinoma-associated antigen and plasma lipid-bound sialic acid, for identifying cancers of the head and neck, plasma specimens were obtained from patients receiving care for untreated newly diagnosed cancers of the head and neck, routine surveillance for recurrence, or treatment for chronic nonmalignant otolaryngologic conditions. Using identical methods at two institutions, levels of both markers were determined blind to diagnoses for patients with biopsy-proven cancers of the head and neck (n = 134) and for those defined as cancer free based on clinical evaluation for 6 months (n = 140). Disease status was determined blind to tumor marker level results. Cancer prevalence was 48.9%. Applying standard normal limits used alone, plasma lipid-bound sialic acid test sensitivity was 63.4% and specificity was 77.9%. For squamous cell carcinoma-associated antigen alone, test sensitivity was 27.6% and specificity was 85.0%. Neither test alone appears sensitive enough to effectively detect early cancers of the head and neck. When the results of both tests in series combination were positive, sensitivity was 18.7% and specificity was 95.0%. If either was positive in parallel combination, sensitivity was 72.4% and specificity was 68.0%. Further evaluation is required that applies different definitions of normal and determines longitudinal changes with disease status.