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PubMed1999

Breast cancer genetics and managed care. The Kaiser Permanente experience.

In 1996, with evolution of the science of cancer genetics and the advent of commercially available BRCA1 and later BRCA2 testing, Kaiser Permanente began to apply these advances in clinical practice. Recommendations for referral to genetic counseling were developed in 1997 as the Clinical Practice Guidelines for Referral for Genetic Counseling for Inherited Susceptibility for Breast and Ovarian Cancer. Implementation of these guidelines with associated protocols in Kaiser Permanente's Northern California Region has occupied the ensuing years and includes dissemination of the high-risk guidelines for breast and ovarian cancer, dissemination of patient and physician educational materials on the breast cancer guidelines, monthly classes and taped healthphone messages for patients, interactive videoconferencing for physicians, a training seminar for medical geneticists who will counsel patients at risk, publication of articles on breast cancer and genetic risk in health plan member- and physician-directed magazines, identification and training of clinical specialists and supporting clinicians to care for patients before and after counseling, individual counseling and testing of patients and families, and development of a data registry. Implementing the guidelines helped us communicate the uncertainty surrounding breast cancer testing, and we were obliged to learn more about ethical, legal, societal, and insurance controversies surrounding genetic testing. Given the lack of effective prevention for breast or ovarian cancer and the difficulty of treatment, the appropriate use of genetics in patient care is essential. In the near future, we will see the need for cancer genetics to become an integral part of practice throughout the spectrum of health care. We at Kaiser Permanente feel that the breast cancer guideline project is the first step in this process.

BRCA1 Protein↗
PubMed2000

Integrating end of life care into services for people with an intellectual disability.

End-of-life issues encompass old age, terminal illness, dying, grief, mourning and bereavement. Such issues have broad impact on older adults with intellectual deficits, their families, friends, roommates, and formal caregivers. As increasing numbers of people with a intellectual disability survive into old age, social workers regularly encounter end of life situations among very diverse individuals. Social workers in hospices, hospitals, and home care agencies are also asking how best to support people confronting the deaths of aging parents and family, housemates, friends, and staff, as well as their own terminal illnesses and dying. The history of care for people' with a disability documents their exclusion from supportive rituals and education about the end of life. Although existing systems of care continue to negatively impact people at the end of life, resources designed to assist people have expanded in the last decade. End of life education, grief counseling, bereavement services, support groups, crisis teams, and end of life committees are some of the strategies for providing more responsive end of life care.

Adult↗
PubMed1994

Vasectomy and vasectomy reversal.

Vasectomy remains the safest method of birth control and there is much to commend it in the setting of a stable family relationship. However, some aspects of this operation have been wrongly presented in an attempt to widen its popularity and increase public acceptance. A simple procedure it may be but it is not totally free of complications; sometimes the operation has to be repeated and rarely it may reverse spontaneously even after the most stringent precautions. The family planning officer who counsels a prospective candidate and the surgeon who undertakes the procedure must ensure that these facts are understood by the patient with crystal clarity and that this fact is duly recorded on a signed and witnessed permission slip. Any organization which includes vasectomy in its programme of family planning should include advice and referral for vasectomy reversal in exactly the same way that the pill may be stopped or a coil can be removed. Fertility can be successfully restored by vasovasostomy in 50% of men who wish to have their vasectomies reversed, which often is due to a change in circumstances beyond their direct control.

Aftercare↗
PubMed1986

Assessment-based group counseling to address concerns of chronic hemodialysis patients.

A Dialysis Patient Concerns Inventory (DPCI) was administered to 15 chronic hemodialysis outpatients by their nurses to assess concerns related to being a hemodialysis patient. This direct information from patients rather than experts in the field was used to construct a group counseling program to address these and other concerns later acknowledged by patients once group counseling began. Components of the counseling program, how the program was implemented, its effects, and factors important in effective program implementation with nurse involvement are discussed. It was concluded that it is important for nurses to play key roles in group counseling to address patients' concerns. It is also important for such counseling to be based on structured assessment of specific concerns reported from patients. Furthermore, it was concluded that group counseling should be planned and executed in ways that actively involve patients and that allow patients to participate for skill development and for life enhancement, rather than to get help with personal problems--a motivator that is often stigmatized.

Adult↗
PubMed1982

Energy intake and nutrition counseling in cystic fibrosis.

Historically, it has been thought that the patient with cystic fibrosis (CF) has a voracious appetite. It is now becoming apparent that many patients do not have caloric intakes which meet their full energy requirements. Our study of CF patient, utilizing, a five-day written record of food consumptions and direct observation, supports this finding and points out the need for further nutritional counseling in providing optimal care for these patients. The cause of increased nutrient requirements and considerations for individualization of counseling are briefly discussed.

Adolescent↗
PubMed1997

Prenatal genetic carrier testing using triple disease screening.

CONTEXT: Rapid progress in gene discovery has dramatically increased diagnostic capabilities for carrier screening and prenatal testing for genetic diseases. However, simultaneous prenatal carrier screening for prevalent genetic disease has not been evaluated, and patient acceptance and attitudes toward this testing strategy remain undefined. OBJECTIVE: To evaluate an educational, counseling, and carrier testing program for 3 genetic disorders: Tay-Sachs disease (TSD), type 1 Gaucher disease (GD), and cystic fibrosis (CF) that differ in detectability, severity, and availability of therapy. DESIGN: Potential participants received education and genetic counseling, gave informed consent, chose screening tests, and completed pre-education and posteducation questionnaires that assessed knowledge, attitudes toward genetic testing, and disease testing preferences. SETTING: Medical genetics referral center. PATIENTS: Volunteer sample of 2824 Ashkenazi Jewish individuals enrolled as couples who were referred for TSD testing. INTERVENTION: Genetic counseling, education, and if chosen, genetic testing for any or all 3 disorders. MAIN OUTCOME MEASURE: Acceptance of screening for each of the 3 disorders. Secondary outcomes include attitudes toward genetic testing and reproductive considerations. RESULTS: Of the 2824 individuals tested for TSD, 97% and 95% also chose testing for CF and GD, respectively. The frequency of detected carriers was 1:21 for TSD, 1 :25 for CF, and 1:18 for GD. Twenty-one carriercoupleswere identified, counseled, and all postconception couples opted for prenatal diagnosis. Pre-education and posteducation questionnaires revealed that patients initially knew little about the diseases, but acquired disease information and increased knowledge of genetic concepts. Education and genetic counseling increased understanding and retention of genetic concepts and disease-related information, and minimized test-related anxiety. Although individuals sought screening for all 3 diseases, reproductive attitudes and decisions varied directly with disease severity and treatability. CONCLUSIONS: These findings emphasize the importance of genetic counseling for prenatal carrier testing and may improve understanding, acceptance, and informed decision making for prenatal carrier screening for multiple genetic diseases.

Adult↗
PubMed2006

Developing empowering health counseling measurement. Preliminary results.

OBJECTIVE: This article describes the derivation of an instrument (Empowering Speech Practices Scale) for assessing the empowerment of dyadic counseling, the evaluation of the validity and reliability of the ESPS and the results acquired with the instrument from hospital counseling. METHODS: ESPS was constructed on the basis of empowerment theory and foregoing conversation analytic research. Nurses and patients assessed the same counseling session by way of parallel statements. Structure and reliability of the scale were evaluated with Cronbach alpha, percentage of agreement, factor analysis and logistic regression analysis. RESULTS: According to these preliminary results, ESPS described the realization of empowerment, directing attention to patient participation. By means of the scale, we assessed 127 counseling sessions and found evidence of the realization of empowering counseling. According to the results, nurses were the most successful in constructing a positive emotional atmosphere and in giving information. CONCLUSION: We found evidence that nurses need to improve the active mutuality of the counseling relationship by asking for patients' opinions and views, by facilitating the patients' assessment of their personal health and their participation in decision-making and coming up with options for their individual treatment. PRACTICE IMPLICATIONS: The developed scale can be utilized, in addition to assessing the quality in hospital care, for improving nursing education programs. Further study is needed to evaluate the usability of the scale and to examine its stability and validity.

Adult↗
PubMed2001

Improving the delivery of adolescent clinical preventive services through skills-based training.

OBJECTIVE: To examine the efficacy of skills-based training workshops on primary care providers' screening and counseling practices with adolescents during routine outpatient well visits. DESIGN: Sixty-three primary care providers in outpatient pediatric departments within a managed health care organization participated in two 4-hour workshops on clinical preventive services for adolescents. The workshops focused on adolescent health, confidentiality, screening, and anticipatory guidance/brief counseling for 5 risk behaviors including: helmet and seatbelt use, tobacco use, alcohol use, and sexual behavior. A pre/posttest design was used to assess clinicians' screening and counseling practices during the pretraining and posttraining periods. Independent adolescent reports of clinicians' practices were obtained from 2 samples of 14- to 16-year-old adolescents immediately after their routine well visit in the outpatient clinics. One sample of adolescents reported during a pretraining period and a separate sample reported during a period after the training. RESULTS: Adolescent reports indicated that after the training workshops, the average percentage of adolescents screened by their primary care providers increased significantly for seatbelt use (from mean 38% to 56%), helmet use (from mean 27% to 45%), tobacco use (from mean 64% to 76%), alcohol use (from mean 59% to 76%), and sexual behavior (from mean 61% to 75%). Additionally, the average percentage of adolescents offered brief counseling by their clinicians increased significantly after training in the areas of seatbelt use (from mean 36% to 51%), helmet use (from mean 25% to 43%), and sexual behavior (from mean 42% to 58%). Improvement after the training in brief counseling for tobacco use was marginally significant (from mean 60% to 69%) and for alcohol use was not significant, although there was an increase. Clinicians also significantly increased their discussion of the limits of confidentiality with their adolescent patients after the training workshops (from mean 32% to 45%). CONCLUSIONS: This study offers strong support for the efficacy of skills-based training for primary care providers as a method for increasing screening and counseling practices with adolescents. The present findings suggest that with appropriate skills-based training, practicing clinicians can implement several of the national guidelines that direct them to provide preventive services for multiple behaviors in a routine outpatient visit. Screening and counseling in these visits are important in the early identification, detection, and prevention of behaviors associated with the primary adolescent morbidities and mortalities. Thus, enhancing the delivery of clinical preventive services is an important step in the prevention of untoward health outcomes for youth.

Adolescent↗
PubMedDate not supplied

Health workers' participation in voluntary counselling and testing in three districts of Mashonaland East Province, Zimbabwe.

OBJECTIVES: To determine the proportion of health workers who had undergone VCT for HIV in three districts of Mashonaland East Province and to further explore reasons for non-participation in those who had not been tested. SETTINGS: The study was conducted in the rural Districts of Murewa, Mutoko and Mudzi in Mashonaland East province. DESIGN: The study was a descriptive cross sectional survey. SUBJECTS: All categories of health workers in Murewa, Mutoko and Mudzi. MAIN OUTCOME MEASURES: Participation in VCT, and reason for non-participation. RESULTS: Out of 200 questionnaires sent out 183 (91.5%) were completed and returned. The majority of the respondents were nurses 142 (77.6%), female 113 (61.7%), married 135 (73.8%). The median age was 33 (Q1; 28: Q3; 38) and they had attained a high school education 137 (74.9%). Of the respondents 160 (87.4%) had not gone for VCT; 141 (77%) did not want to have an HIV test. The reasons for not being willing to have an HIV test included not being ready to go for VCT 154 (84.2%); could not cope with the results, 143 (78.1%), do not have the courage to go 133 (72.7%); no need for testing as there is no cure for HIV/AIDS 106 (57.9%). One hundred and twenty six (69%) indicated that they needed counselling for them to be able to go for VCT. CONCLUSION: HIV/AIDS programmes have been directed at the community at large neglecting the health worker. This study, therefore, recommends programmes specifically tailor-made for health workers. These programmes should have a strong counselling component and should focus on self-efficacy so that health workers can finally be ready, be able to cope with HIV results and have the courage to participate in VCT.

Adult↗
PubMed2006

The role of prevention in oncology practice: results from a 2004 survey of American Society of Clinical Oncology members.

PURPOSE: In 2004, the American Society of Clinical Oncology (ASCO) Cancer Prevention Committee surveyed the members to describe involvement in clinical prevention activities. METHODS: A previously administered survey, with updated items on genetics, chemoprevention, and survivorship, was mailed to a stratified random sample of 2,000 domestic members and a convenience sample of 3,144 international members. RESULTS: A total of 49.7% of domestic members contacted and survey eligible responded (n = 851). Nonresponders were younger (50.5 v 51.7 years; P < .01); 465 international members responded. Overall, 35% had received formal instruction in cancer prevention and control, and most respondents expected increased use of prevention, screening/early detection, and risk reduction/genetic counseling in their practices in the next 5 years. Most reported caring for cancer survivors, including providing general medical care. They also either directly provide or refer patients for cancer prevention and control services (eg, cancer screening, tobacco and nutrition counseling, risk reduction, and chemoprevention). Multivariable modeling found fewer perceived barriers to inclusion of cancer prevention activities in clinical practice among those practicing in an academic setting, seeing a higher proportion of patients without a cancer diagnosis, having formal training in prevention and control, expecting an increase in prevention activities in the next 5 years, and providing community advice on prevention. CONCLUSION: Barriers to the inclusion of cancer prevention and control activities in oncology clinical practice exist. Nevertheless, a substantial proportion of both domestic and international ASCO members report an interest in cancer prevention and control activities, with a desire for more specific educational programs in this emerging area of oncology practice.

Adult↗
PubMed2000

Molecular analysis of familial androgen insensitivity syndrome due to replacement of glutamic acid 802 by lysine.

We studied a Japanese family presenting at least two cases of complete androgen insensitivity syndrome (CAIS) and negative androgen receptor binding. The index subject showed a 46, XY karyotype and a complete female phenotype. For the purpose of further diagnosis and genetic counseling, molecular analysis of the androgen receptor (AR) gene was performed. Direct sequencing of the AR gene identified a mutation at nucleotide 2935 (A-->G). This replacement was a novel missense mutation, resulting in the substitution of glutamic acid 802 by lysine which deleted a recognition site for EcoRI in exon 6 of the AR gene. We identified another affected individual, using chromosome and molecular analysis of the AR gene at exon 6. Furthermore, although heterozygote carriers could not be identified on clinical grounds, molecular identification of healthy individuals and heterozygote carriers in the family members provided definitive information for genetic counseling. We believe that the molecular analysis of familial CAIS is very informative for both the affected individuals and other family members.

Adolescent↗
PubMed1997

Genetic counseling in perinatal medicine.

The obstetrician/perinatologist should be well informed about recent advances in human genetics that directly impact patient care. New indications for molecular analyses, specific limitations in their usage, and the need for interpretation of complex laboratory results emphasize the increasingly necessary clinical genetics consultation. The advent of DNA-based presymptomatic or predictive testing introduces dilemmas for patients and their families, and raises medical, legal, and ethical issues in genetic counseling.

Ethics, Medical↗
PubMed2006

Identification of Bruton tyrosine kinase mutations in 12 Chinese patients with X-linked agammaglobulinaemia by long PCR-direct sequencing.

X-linked agammaglobulinaemia (XLA) is an immunodeficiency caused by Bruton tyrosine kinase (BTK) gene mutations. The disease is characterized by recurrent bacterial infections and profound hypogammaglobulinemia with marked reduction or lack of mature B-cells in the peripheral blood. Molecular characterization of BTK gene provides an opportunity for definitive diagnosis of XLA patients, especially for those with atypical phenotype resulting in a milder or late-onset form of the disease. The diagnosis allows accurate carrier detection with subsequent genetic counselling and prenatal diagnosis. In this study, long polymerase chain reaction (PCR)-direct sequencing analysis of the BTK gene in 12 unrelated Chinese XLA patients had been performed. Eight recurrent mutations and four novel mutations were identified. This is the first report of Chinese cases from three different East Asia regions together, including Hong Kong, Singapore and mainland China. Future clinical and genetic information from the undiagnosed Chinese XLA patients may provide insight into the genotype-phenotype correlations of BTK gene.

Adolescent↗
PubMed1987

Rational-emotive therapy: an excellent counseling theory for NPs.

Rational-emotive therapy (RET) is a comprehensive, multimodal, active-directive and relatively brief form of psychotherapy that is particularly suited for use by nurse practitioners. RET theory assumes that people have innate tendencies to think rationally and irrationally; therefore, people have the ability to fulfill and actualize themselves and to easily upset and defeat themselves. The basic tenets of RET help people distinguish between their own rational and irrational beliefs, and their consequent appropriate and inappropriate emotions and behaviors. Many cognitive, emotive and behavioral methods are used to help clients minimize their symptoms of anxiety, depression, self-hatred and rage. Nurse practitioners using RET can help their clients make profound philosophic changes that prevent future emotional problems and encourage maximum health and self-actualization.

Counseling↗
PubMedDate not supplied

Utility of a Web-based intervention for individuals with type 2 diabetes: the impact on physical activity levels and glycemic control.

Despite the numerous benefits of physical activity for patients with diabetes, most healthcare providers in busy clinical settings rarely find time to counsel their patients about it. A Web-based program for healthcare providers can be used as an effective counseling tool, when strategies are outlined for specific stages of readiness for physical activity. Seventy-three adults with type 2 diabetes were randomly assigned to Web-based intervention, printed-material intervention, or usual care. After 12 weeks, the effects of the interventions on physical activity, fasting blood sugar, and glycosylated hemoglobin were evaluated. Both Web-based and printed material intervention, compared with usual care, were effective in increasing physical activity (P < .001) and decreasing fasting blood sugar (P<.01) and glycosylated hemoglobin (P < .01). Post hoc analysis for change scores indicated significant differences between Web-based intervention and usual care and between printed material intervention and usual care, but not between web-based and printed material intervention. The findings of this study support the value of Web-based and printed material interventions in healthcare counseling. With increasing Web access, the effectiveness of Web-based programs offered directly to patients needs to be tested.

Analysis of Variance↗
PubMed1991

The role of the pediatrician in identifying and treating dental caries.

Although dental caries has been reduced greatly in the last two generations, this infectious disease persists. The pediatrician can play a direct and indirect role in preventing dental caries. The pediatrician can provide counseling on feeding practices to prevent baby bottle tooth decay as well as identify children at risk. Dental caries of the grooves of molar teeth now accounts for dental caries in more children than any other form of caries. Dental sealants are recommended to coat the grooves and prevent dental caries. Restoration of decayed teeth is the most direct means of treating dental caries.

Adolescent↗