The regional drug information service: a factor in health care?

Most regional health authorities throughout the United Kingdom have established drug information units to provide health service staff with a wide range of information about drugs and drug use. The units, which are staffed by drug information pharmacists, provide their service mainly by answering inquiries, although some disseminate information more positively through lectures and bulletins.An analysis of inquiries received by regional information units during 1976 showed that most were submitted by hospital doctors or pharmacists; comparatively few were received from general practitioners. Topics of inquiry included adverse effects of drugs, source of supply and identification, current treatment, dosage, route, precautions, and pharmaceutical problems such as stability or formulation of drug preparations. A more detailed analysis of the inquiries received by the North-western Regional Drug Information Service at Manchester over three years showed that the number of inquiries gradually increased and that more were received from general practitioners after a programme of lectures had been introduced to tell them about the service. The North-western service also received more requests from hospital pharmacists than other units, though many originated from clinicians.The regional drug information units consulted widely with clinical and other specialists in answering questions, but about a quarter of all inquiries were pharmaceutical, relating to stability and incompatibility. A multidisciplinary approach therefore seems necessary to provide a comprehensive and advisory drug information service.     

Analysis of pregnancy-related calls to an occupational hazard hot line.

Since 1980 the Hazard Evaluation System and Information Service has responded to over 11,000 inquiries regarding workplace health hazards. Of 2,424 inquiries in 1986, 593 (24%) concerned hazards to pregnancy. This represents a 17-fold increase since 1981. Most pregnancy-related inquiries were from employees (70%) and health care providers (23%). Referral sources for the employees calls were almost exclusively individual health care providers or institutions that provide health care or health counseling, or both. These data suggest that pregnant employees seek information on their own or from health care providers instead of from employers. Of the inquiries, 80% were for general pregnancy hazard information; 20% involved symptomatic pregnant employees. Most inquiries concerned employment in the services (58%) and manufacturing (26%) sectors. Organic solvents, pesticides, acrylic nail-grooming products, lead, and video display terminals were among the agents about which callers inquired most frequently.     

The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An ‘ethic of care’ interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.     

What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study

Objective To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness.Design A qualitative study with semistructured single interviews.Setting Perth, Western Australia, and Winnipeg, Manitoba, Canada.Participants 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg.Results Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit.Conclusions Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.     

National Poisons Information Services: report and comment 1980.

The National Poisons Information Services (NPIS) covering the United Kingdom and the Republic of Ireland currently receive over 40,000 telephone inquiries a year. Over the years there has been little change in the proportion of inquiries related to each of the main categories of poisons (drugs, household, chemical, agricultural, animals, and plants). More detailed analysis, however, shows pronounced changes in the inquiries relating to specific types of poisoning, particularly with drugs. By monitoring these trends and assessing the risks of toxicity, the NPIS has an important role in informing the medical profession of the need for preventive measures and for improved methods of treatment. At present, the NPIS cannot make full use of the available data due to inadequate staffing and lack of computer facilities. It is argued that for a modest increase in funding a much more comprehensive service could be provided.     

Testing participation in BRCA1/2-positive families: initiator role of index cases

The objectives of this study were to: (1) describe diffusion of information by affected women in whom a mutation has been identified (index cases) to their families and testing participation among high-risk relatives; (2) assess information recall and understanding by index cases and their satisfaction with the testing process; and (3) determine the factors associated with higher/lower testing decision in the family. Thirty index cases completed a self-administered questionnaire assessing their personal and family characteristics and their satisfaction with their own genetic testing process and a telephone interview to evaluate their knowledge about the risk of a genetic predisposition to breast and ovarian cancer, the type and number of close relatives that they informed, and the difficulties that they encountered. Information about breast/ovarian cancer risk and test availability was generally well transmitted (75%), predominantly (88%) to first-degree relatives. In contrast, testing participation was low (15%) and essentially occurred among sisters and daughters. There was a general lack of knowledge despite a high level of satisfaction regarding the information given by the geneticist. Family support and the knowledge of index cases about the risk of transmission of BRCA1/2 mutations by women were found to be positively and significantly associated with the testing decision among first-degree relatives. Difficulties in informing relatives appeared to be related to poor understanding of the information by index cases, as well as fear, and avoidance among close relatives. A major challenge for genetic counseling is to ensure that consulting patients not only receive complete understanding but also understand this information and anticipate the impact of the test result before deciding to take the test.     

Colorectal cancer cases and relatives of cases indicate similar willingness to receive and disclose genetic information

Context: Recent developments in genetic testing allow us to detect individuals with inherited susceptibility to some cancers. Genetic testing to identify carriers of cancer-related mutations may help lower risk by encouraging preventive behaviors and surveillance. This study assessed willingness of colon cancer cases and relatives to receive genetic information that may indicate an increased risk for cancer, to whom they would disclose genetic information, and whether receiving genetic test results may influence future prevention behaviors among individuals enrolled in the Seattle Colorectal Cancer Family Registry. Methods: Incident invasive colorectal cancer cases were identified from the Puget Sound Surveillance Epidemiology and End Results (SEER) registry. In 2007, a sequential sample of cases and relatives (n = 147) were asked to respond to a questionnaire addressing study aims. The questionnaire was administered during a baseline or 5-year follow-up interview. Results: Patterns of response to each statement were similar between colorectal cancer cases and relatives. Both colorectal cases (95%) and relatives (95%) reported willingness to receive genetic information. Nearly all participants would tell their doctor the results of a genetic test (99% of cases; 98% of relatives), and all married participants would tell their spouses. Cases (96%) anticipated being slightly more likely than relatives (90%) to change their cancer screening behavior, but this difference was not statistically significant (p = 0.33). Conclusions: A high percentage of both colorectal cancer cases and relatives sampled from the Seattle Colorectal Cancer Family Registry are interested in identifying their genetic status, discussing their genetic status with their family and doctor, and adopting behavioral changes that may reduce cancer risk.     

Comprehensive clinical drug information service: first year's experience.

A comprehensive clinical drug information service, established in the Northern Region in May 1975, is manned by eight doctors--all clinical pharmacologists--and is available 24 hours a day. In the first year of operation 451 inquiries were received, 354 (78-5%) of which were "consultative." Though junior hospital doctors used the service most, almost half of the inquiries about adverse reactions to drugs came from consultants.     

How the internet affects patients' experience of cancer: a qualitative study

Objective To explore how men and women with cancer talk about using the internet.Design Qualitative study using semistructured interviews collected by maximum variation sampling.Setting Respondents recruited throughout the United Kingdom during 2001-2.Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up.Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors'' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.”Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people''s self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.     

Comparison of community based service with hospital based service for people with acute,severe psychiatric illness.

OBJECTIVE--To compare the burden on relatives and outcome of people treated for severe acute psychiatric illness by a community service and a traditional hospital based service. DESIGN--Follow up of patients aged 16-65 who required admission to hospital or home treatment for psychiatric illness during January 1990 to February 1991. SETTING--Two Birmingham electoral wards, Sparkbrook and Small Heath; Sparkbrook has a community based service and Small Heath a traditional hospital based service. SUBJECTS--69 patients from Sparkbrook and 55 from Small Health. MAIN OUTCOME MEASURES--Scores on present state examination, social behaviour assessment schedule, and general health questionnaire. RESULTS--24 (35%) of Sparkbrook patients received some treatment in hospital during the initial episodes. Relatives of Sparkbrook patients were less distressed by their burden at the initial assessment than relatives of Small Health patients (mean score 0.11 v 0.29, p < 0.01). Relatives were also more satisfied with the support they received and the treatment received by patients. More patients from Sparkbrook than Small Health were in contact with a psychiatrist (81% (95% confidence interval 71% to 91%) v 62% (44% to 68%)) and community nurse (56% (44% to 68%) v 14% (13% to 24%)) one year after the initial episode. Sparkbrook patients spent significantly fewer days in hospital during the initial episode (8 days v 59 days) and the first year (20.6 v 67.9 days). CONCLUSION--The community based service is as effective as the hospital based service and is preferred by relatives. It is more effective in keeping people in long term contact with psychiatrists.     

Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information

This study's aim was to ascertain hereditary nonpolyposis colorectal cancer (HNPCC) families' views on the duty to inform with particular focus on the role of health professionals in disseminating familial genetic information. Eighty members of 16 families with a clinical or molecular diagnosis of HNPCC completed qualitative interviews regarding views on family members' right to know and who should disseminate familial genetic information. Most indicated that everyone in the family should know about the presence of a mutation in the family, with family members themselves being the preferable informant, supported by health professionals who were seen as helpful in overcoming barriers. All but one respondent indicated that if a parent did not test and presumably did not inform his/her child about the family mutation, the child should be informed by other family members or by a health professional. Many were attuned to confidentiality concerns, but judged them to be outweighed by the importance of family members knowing about the mutation and undertaking proper surveillance. Respondents were more private about the disclosure of individual results to other family members, clearly distinguishing personal results from familial genetic information. These families with a hereditary colon cancer syndrome favor open sharing of genetic information within the family, and desire the supportive involvement of health care professionals in disseminating genetic information.     

The National Poisons Information Service and hospital admissions for children--the experience in Wales of the Cardiff Centre.

When inquiries to the Cardiff Centre of the National Poisons Information Service were compared with hospital admissions in the eight health authorities in Wales the findings suggested fewer admissions in the area within which the centre is situated and showed a more extensive use in that area than elsewhere. High inquiry rates were associated with high hospital admission rates when the eight areas were compared. If the service were delegated to area level a more complete community use would result.     

Audit of terminal care in a general practice.

OBJECTIVE--To determine satisfaction of relatives and general practitioners with care of patients during terminal illness and make recommendations on improving terminal care in general practice. DESIGN--Interviews with available relatives of patients who had had terminal illnesses and died in 1987, supplemented by questionnaires; questionnaire survey of general practitioners after review of case notes of all their patients who had died of terminal illnesses in 1987. SETTING--One urban general practice. SUBJECTS--34 Relatives of patients with terminal illnesses who died in 1987; five general practitioners from one practice. RESULTS--In six cases relatives were dissatisfied, mainly because of lack of communication; in eight cases doctors were dissatisfied because of communication, poor symptom control, and inadequate care. IMPLICATIONS--There is a need for improved communication between relatives and the health professionals involved in terminal care as well as better advice on services and benefits available to both patients and relatives. Bereavement counselling should be better organised.     

Children with 4q-syndrome: the parents' perspective

A questionnaire survey was conducted among the parents of 32 not previously described children with 4q-syndrome, and 4 affected adult relatives. The questions related to the medical condition of the individual child and the interactions between parents and health professionals. The response rate of the survey was 58 %, and the mean age of the patients was 11.2 years. Thirty eight percent of children were diagnosed within the 1st month of life. Most parents felt severely distressed at the time of diagnosis and 66 % complained about a lack of medical information made available to them. However, parental understanding of the genetic aetiology responsible for the 4q-syndrome was overall good. Apart from a multidisciplinary team of healthcare workers, the internet and religion were named as sources of support. In all, 86 % of parents valued the experience of having a child with 4q-syndrome highly despite the difficulties involved.     

Organisation of primary care services outside normal working hours.

OBJECTIVE--To determine the use and organisation of out of hours services in primary care. DESIGN--Telephone survey. SETTING--Family health services authorities in England and Wales. MAIN OUTCOME MEASURES--Rate of use of out of hours care, methods of provision, and role of authorities. RESULTS--12-25% of authorities were unable to answer one or more key questions in the survey because of insufficient information. The mean number of night visits made per unrestricted principal per 1000 patients per year was 35.3. 13 of the 19 authorities with averages above 40 covered large towns or cities. 81 authorities had at least one commercial deputising service. In 46 metropolitan districts and one other district over 75% of general practitioners had consent to use a deputising service, although not all did so. Information on cooperation between practices was limited. 22 cooperatives were recognised by the authorities, nine were not officially recognised, and a further 13 were nearing institution. Only two cooperatives were in areas with extensive use of deputising services. CONCLUSION--Methods of providing out of hours care are changing, and without good information systems family health services authorities will not be able to monitor the effect on quality and cost effectiveness of care.     

The More the Better? A Comparison of the Information Sources Used by the Public during Two Infectious Disease Outbreaks

Recent infectious disease outbreaks have resulted in renewed recognition of the importance of risk communication planning and execution to public health control strategies. Key to these efforts is public access to information that is understandable, reliable and meets their needs for informed decision-making on protective health behaviours. Learning from the trends in sources used in previous outbreaks will enable improvements in information access in future outbreaks. Two separate random-digit dialled telephone surveys were conducted in Alberta, Canada, to explore information sources used by the public, together with their perceived usefulness and credibility, during the 2003 Severe Acute Respiratory Syndrome (SARS) epidemic (n = 1209) and 2009–2010 H1N1 pandemic (n = 1206). Traditional mass media were the most used information sources in both surveys. Although use of the Internet increased from 25% during SARS to 56% during H1N1, overall use of social media was not as high as anticipated. Friends and relatives were commonly used as an information source, but were not deemed very useful or credible. Conversely, doctors and health professionals were considered credible, but not consulted as frequently. The use of five or more information sources increased by almost 60% between the SARS and H1N1 surveys. There was a shift to older, more educated and more affluent respondents between the surveys, most likely caused by a decrease in the use of landlines amongst younger Canadians. It was concluded that people are increasingly using multiple sources of health risk information, presumably in a complementary manner. Subsequently, although using online media is important, this should be used to augment rather than replace more traditional information channels. Efforts should be made to improve knowledge transfer to health care professionals and doctors and provide them with opportunities to be more accessible as information sources. Finally, the future use of telephone surveys needs to account for the changing demographics of the respondents accessed through such surveys.     

Genetic factors in the development of gastric precancerous lesions--a role of Helicobacter pylori ?

Helicobacter pylori is believed to predispose to gastric cancer by inducing gastric precancerous alterations. There is a well known predisposition to gastric cancer and the risk of developing it is greater in relatives of patients with familial cases of this malignancy. The aim of this study was to determine the prevalence of gastric precancerous lesions (atrophy and intestinal metaplasia) and their association with Hp infection in first-degree relatives in patients with noncardia gastric cancer. METHODS: Hp status and gastric histology assessed by upper gastrointestinal endoscopy, biopsies from the antral and body region, the rapid urease test and staining for Hp, inflammation, activity, atrophy and intestinal metaplasia (prevalence and grading) were studied in 108 first-degree relatives of patients with noncardia gastric cancer and compared with 73 controls with mild non-ulcer dyspepsia who had no cancer relatives and were examined in the same way. RESULTS: subjects with and without cancer relatives had a similar prevalence of Hp infection (49 vs. 47%). Endoscopy revealed a few asymptomatic duodenal ulcers and small hiatus hernias in Hp positive subjects of both groups. Hp positive relatives of gastric cancer had a markedly higher prevalence of atrophy than those with Hp negativity without cancer relatives (29 vs. 9%) and those with Hp negativity and cancer relatives (29 vs. 3%. Prevalence of intestinal metaplasia was also higher in those with Hp positivity and cancer relatives than in those without cancer relatives (15 vs. 5% and was not present in Hp negative subjects with cancer relatives. Inflammation and activity showed similar scores in subjects with and without cancer relatives with higher scores in both Hp positive groups. The prevalence of precancerous lesions in the relatives of gastric cancer was nearly always confined to those with Hp positivity. One year after eradication the prevalence of atrophy in cancer relatives decreased from 29 to 14%; prevalence of intestinal metaplasia remained without substantial changes. Scores for inflammation and activity were also lower after eradication. CONCLUSIONS: First-degree relatives of patients with gastric cancer have an increased prevalence of gastric precancerous abnormalities which are strongly confined to those with Hp infection. Eradication of Hp in these subjects with cancer relatives reduces the prevalence of precancerous lesions (atrophy) and grades of inflammation and activity. In view of these results, eradication of Hp should be offered to such subjects.     

Accuracy of cancer family histories: comparison of two breast cancer syndromes

Cancer risk programs rely on accurately reported family history information. This study compares the accuracy with which cancer sites and ages at diagnosis are reported by Li-Fraumeni syndrome (LFS) and hereditary breast-ovarian cancer syndrome (HBOCS) families undergoing genetic testing. We analyzed the accuracy of 191 cancer diagnoses among first-degree (FDRs) and second-degree (SDRs) relatives reported by 32 LFS and 52 HBOCS participants in genetic testing programs. Cancer diagnoses of relatives were more accurately reported in the HBOCS cohort (78%) than in the LFS cohort (52%). Almost all breast cancer diagnoses were accurately reported, whereas 74% of ovarian cancer diagnoses and only 55% of other LFS-related cancers were accurately reported. Age at diagnosis was accurate within 5 years for 60% of LFS relatives and 53% of HBOCS relatives. Factors correlating with accurate reporting of cancer history included: being member of BRCA1 family, higher education level, female historian, degree of closeness to affected relative, and having fewer than 5 affected FDRs and SDRs. Relying on verbal histories would not have altered eligibility for genetic testing among HBOCS historians, but fewer than half of LFS historians provided information that would have led to TP53 testing. Our data suggest that it may not be necessary to confirm breast cancer diagnoses routinely; however, documentation of other cancer types remains important for appropriate risk assessment and follow-up.     

Completeness of cervical cancer staging information in Brazil: A national hospital-based study

BackgroundCancer staging information in Hospital Cancer Registries (HCR) is essential for cancer care quality evaluations. This study aimed to analyze the completeness of cervical cancer staging in Brazilian HCR and identify individual and contextual factors associated with unknown staging.MethodsThe outcome analyzed was missing or unknown staging (Malignant Tumor Classification System and/or International Federation of Gynecology and Obstetrics) in 2006–2015. Individual data on cancer cases were collected from the HCR Integrator. Contextual variables were collected from the Atlas of Human Development in Brazil, the National Registry of Health Facilities, and the Outpatient Information System. The random intercept multilevel Poisson regression model was performed to identify the factors associated with the outcome.ResultsThe prevalence of unknown staging data was 32.4% (95% confidence interval [CI], 32.1–32.7). Women aged 18–29 years (prevalence ratio [PR], 1.48; 95% CI, 1.42–1.54), referred by the public health system (PR, 1.16; 95% CI, 1.11–1.21), living in states with a low density of oncologists (PR, 1.70; 95% CI, 1.62–1.79), and with a low cytopathological testing rate (PR, 1.69; 95% CI, 1.57–1.82) showed a higher prevalence of unknown tumor staging data. A lower level of education (PR, 0.91; 95% CI, 0.84–0.98) was associated with complete staging data.ConclusionsIndividual and contextual factors were associated with missing staging data. It is necessary to improve information on cancer in the HCRs by improving the awareness and training of Brazilian cancer care professionals.     

Impact of genetic testing for breast-ovarian cancer susceptibility

Previously, we have reported a clinical trial in which any woman in a defined geographic region who had a qualifying family history and who was referred by her physician or who was identified through a regional cancer registry was offered free genetic counseling, BRCA testing, and recommendations based on test results. Each family was represented by one affected and one unaffected person. Of the 87 families actually tested, 13 were found to have deleterious mutations. To assess the impact of the counseling and testing process, we contacted the tested individuals 1 month and 1 year after receiving the test result and those with an abnormal test result after 4 years. Index subjects, we found, differed significantly from relatives. Before coming for counseling, index subjects perceived both their general health and emotional health as worse than did their relatives. After counseling and testing, index subjects continue to worry more about breast cancer than do relatives. Affected subjects, we found, differed significantly from unaffected subjects. Before counseling, affected subjects knew more about breast cancer, perceived their general health as poorer, and reported greater adherence to recommended breast cancer surveillance than did unaffected subjects. After counseling and testing, affected subjects were less satisfied than unaffected subjects with having been tested. This study indicates that the group most prone to distress by cancer risk genetic counseling and testing is not the recruited relatives, nor even those affected with cancer, but rather the index patients themselves. The index patients, i.e., the ones who want the risk information most, appear to undergo the most stress in obtaining it.