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Effective communication of drug safety information to patients and the public: a new look.

Recent parallel developments in the fields of medicine and the social sciences are providing us with new insights and resources that have the potential for improving the effectiveness of drug safety communication and decision-making. These developments include medicine's new look at patient safety with its emphasis on complex adaptive systems, education's new appreciation for learning as an internal change process and risk communication's evolving recognition that relevant knowledge may not be the exclusive property of 'experts'. Eight principles are drawn from this analysis: there cannot be a safer drug until there is a safer system;all stakeholders are equal partners and have an equal voice in all deliberations;paternalism must be eliminated;the expertise for determining acceptable benefit and risk is dispersed throughout society;patients and all stakeholders serve as both teachers and learners;all stakeholders are involved in the identification of their learning needs, processes and evaluation of outcomes;in a complex adaptive system all individual actions are interconnected and;patients must be involved in the continuous feedback and redesign of the evolving drug safety information system. The conclusion is that we are not asking the right questions; 'what information should we communicate?' and 'how do we communicate more effectively?' should be reframed to ask 'how do we provide an equal voice for patients with the other stakeholders in the determination and communication of benefit-risk information?' Some patients are not waiting. The International Alliance of Patient Organizations (IAPO), the Database of Individual Patient Experience (Dipex) and the Self-Help Group Clearinghouse are examples of international patient driven efforts to actively participate in their own care. The author suggests that the emerging discipline of inter-active management can contribute methodologies for creating citizenship models to generate the collective wisdom and translate it into action. A future research agenda calls for creating new models of public accountability that support these evolving systems of engaging the entire community in benefit-risk determination, communication and management.

Communication↗

A sexual enhancement program for elderly couples.

This study was designed to examine the effects of a group sexual enhancement program for elderly couples. Ten marital couples whose ages ranged from 51 to 71 were placed in one of three sexual enhancement groups based on their scheduling preferences. All groups followed the same format, but each was conducted by a different pair of group leaders. The sexual enhancement program was divided into three 2-week phases: (1) a pretreatment period in which there was no contact with the therapists, (2) an education phase in which subjects were provided with information on human sexual functioning in aging people in particular, and (3) a communication exercises-sexual techniques phase in which subjects were instructed on methods to improve communication and increase enjoyment of sexual contact. Following an initial interview in which the purpose of the study was explained, subjects were administered a questionnaire assessing satisfaction and frequency of sexual activities and perception of partner's sexual satisfaction. The questionnaire was readministered after the pretreatment phase, after the education phase, and 4 weeks following the end of the program. In general, significant increases in sexual satisfaction, frequency of certain sexual activities, and positive attitudes about marital and life satisfaction were found to occur over the course of the sexual enhancement program. These significant increases occurred either during the pretreatment period or during some combination of phases.

Aged↗

[HIV infection, gonorrhea and syphilis from Thailand to Norway].

Thailand, a popular tourist destination for Norwegians, is experiencing an increasing epidemic of HIV infection. We used the Norwegian surveillance system for communicable diseases to assess the connections between the Norwegian and Thai epidemics. Before 1999, 1,869 cases of HIV-infection had been reported in Norway. From 1993 to 1998, 1,334 cases of gonorrhoea and 62 cases of syphilis were reported. We studied cases with a Thai patient or source partner and cases acquired in Thailand. 56 (3%) of HIV-infection cases, 64 (5%) of gonorrhoea cases and two (3%) of syphilis cases were connected to Thailand. All the Norwegians who acquired HIV in Thailand were males, with a median age of 39. Eight of them were diagnosed in 1998 as compared to 16 during the previous ten-year period. 21 Thai women and seven males were diagnosed with HIV infection in Norway, eight in 1998 and 20 in the previous ten-year period. The Norwegian HIV epidemic is influenced by the Thai epidemic. Norwegian men are infected in Thailand during holidays. Thai women come with their Norwegian partner to Norway and later discover their HIV status. We recommend raising the awareness of the Thai epidemic among Norwegian tourists. Immigrants to Norway from highly endemic countries should be offered HIV counselling and testing.

Communicable Disease Control↗

Patients as partners in a health research agenda setting: the feasibility of a participatory methodology.

This article deals with the participation of patients in setting the agenda of health research that potentially directly affects their lives. The focus is on the communication problems encountered between lay people and medical professionals in developing a joint research agenda. The author argues that a participatory methodology can address these problems and thereby give patients "a say" in the types of health research that have the greatest chance of affecting them personally. The article uses a case example of people with spinal cord injuries participating in research to support the importance and value of patient participation. The case example also helps to rethink appropriate methodologies or at least to modify existing approaches by paying more attention to required social conditions, diversity, and the life world of patients to foster meaningful participation.

Communication↗

Oesophageal cancer: Experiences of patients and their partners.

Oesophageal cancer (OC) is a debilitating disease with significant social, psychological and physical impacts on health and lifestyle (Mills and Sullivan, 2000). The research presented in this paper uses a survey method, and reveals that patients require honest communication and more help with everyday living from nurses to facilitate recovery. Each patient is unique but commonalities can be established that improve experience and outcome. Three themes emerged from the data: food, activity and positivity. To meet long-term needs, the Oesophageal Patients Association is fundamental for patients and carers in order adapt to this major life-changing event.

Attitude to Health↗

Promoting interaction during sociodramatic play: teaching scripts to typical preschoolers and classmates with disabilities.

We investigated the effects of teaching sociodramatic scripts on subsequent interaction among three triads, each containing 2 typical children and 1 child with autistic characteristics. The same type and rate of teacher prompts were implemented throughout structured play observations to avoid the confounding effects of script training and teacher prompting. After learning the scripts, all children demonstrated more frequent theme-related social behavior. These improvements in social-communicative interaction were replicated with the training of three sociodramatic scripts (i.e., pet shop, carnival, magic show) according to a multiple baseline design. These effects were maintained during the training of successive scripts and when the triads were reconstituted to include new but similarly trained partners. Results provided support for the inclusion of systematic training of scripts to enhance interaction among children with and without disabilities during sociodramatic play.

Autistic Disorder↗

Demographic, risk factor, and knowledge differences between Latinas and non-Latinas referred to colposcopy.

OBJECTIVE: Disparities occur in the incidence and mortality of cervical cancer among minority women in the US. Screening lowers cervical cancer incidence. Screening rates are lower for minority women than for White women in the US. This study sought to identify demographic, risk factor, and perception of the role of Pap smears between Latinas and non-Latinas. METHODS: A written survey was administered to 150 Latinas and 150 non-Latinas attending a colposcopy unit. Data on demographics, risk factors, screening rates, knowledge about cervical cancer screening, and perceived barriers to participation in screening programs were collected. RESULTS: A total of 140 Latinas and 146 non-Latinas completed the survey. Marital status and health insurance status were similar in the two groups. 30% of Latinas and 73.3% of non-Latinas reported completing college (p<0.0001). Only 55.7% of Latinas were employed, compared to 82.2% of non-Latinas (p<0.0001). 21% of Latinas and 53.4% of non-Latinas reported an annual income greater than 35,000 dollars (p<0.0001). Among Latinas, women with 1-5 lifetime Pap smears were less likely to have completed college than those with more than 5 lifetime Pap smears (OR=2.11; 95% CI 1.05-4.22) and to have an annual income of less than 35,000 dollars (OR=3.81; 95% CI 1.64-8.87). Latinas were less likely to have > or =6 lifetime sexual partners, use tobacco, and have a history of sexually transmitted infections. Latinas more commonly reported fear of test results (OR, 0.04; 95% CI 0.02-0.09) and inability to communicate with their provider in Spanish (p<0.0001) as barriers to screening than the non-Latina respondents. CONCLUSIONS: Several of the barriers limiting access to cervical cancer screening programs are also present among screened Latinas undergoing further evaluation for abnormal Pap smears.

Adult↗

Measuring the infectiousness of persons with HIV-1: opportunities for preventing sexual HIV-1 transmission.

Methods to reduce sexual transmission of HIV-1 are urgently needed to slow the global HIV-1 epidemic. These methods should include interventions that minimize susceptibility in uninfected populations at risk, as well as interventions that decrease the infectiousness of HIV-1 infected individuals. Surprisingly few interventions to prevent HIV-1 transmission have been targeted at persons who are already infected, although such interventions could have a significant impact on population-wide HIV-1 spread. This review summarizes current knowledge of factors that influence HIV-1 infectiousness, with special attention on the role of genital tract HIV-1 as a surrogate marker of infectiousness. Epidemiologic studies have demonstrated good agreement between factors associated with increased HIV-1 transmission and increased HIV-1 genital tract shedding. Treatment of sexually transmitted diseases and initiation of antiretroviral therapy have been shown to reduce HIV-1 shedding and thus are promising interventions that may reduce HIV-1 transmission. Unresolved issues related to optimal measurement techniques for genital HIV-1, promises and limitations of antiretroviral therapy and vaccines to reduce infectiousness, and other intervention strategies still in development are reviewed.

Communicable Disease Control↗

Model-based immunization information routing.

We have developed a model for clinical information routing within an immunization registry. Components in this model include partners, contents and mechanisms. Partners are classified into senders, receivers and intermediates. Contents are classified into core contents and management information. Mechanisms are classified into topological control, temporal control, process control and communication channel control. Immunization reminders, forecasts and recalls in e-mail, fax and regular mail format are routed based on this model. Algorithms for deducing patient provider and patient clinical site relationships are developed to facilitate routing. A dummy provider within each site and a dummy site are created to manipulate routing for incomplete data. 46.63% of patients' primary providers and 92.58% of patients' clinical sites are successfully identified.

Computer Communication Networks↗

[Folie à deux in schizophrenia--"psychogenesis" revisited].

OBJECTIVE AND METHOD: Since the 19th century, many studies have reported on folie à deux (FAD) in subjects with endogenous psychosis. However, the etiology of FAD in patients with schizophrenia has remained unclear, primarily because the possible psychogenic or reactive mechanisms of delusional contagion supposed in FAD were not compatible with the classical concept of endogenous psychosis. However, possible psychogenic mechanisms of FAD in schizophrenia were argued by Bleuler, E and Bleuler, M. The problem of how to distinguish the endogenesis from the psychogenesis (reaction) in FAD results in an aporia well-discussed in the German-speaking psychiatry: how induction in endogeneous psychosis might be possible? In the present study, first, a case of FAD in a husband and wife both with schizophrenia was reported. Three case reports of FAD in schizophrenic married couples from Japanese literature were also examined and the concept of the mind which lies in the background of psychogenesis/endogenesis dicotomy was discussed. CASE REPORT: A 34-year-old housewife had constructed a persecutory delusion shortly after the death of her father. She became convinced that her relative who was a Yakuza (Japanese Mafia) member was planning to kill her. She also reported auditory hallucinations. Her 41-year-old husband, who had been diagnosed with schizophrenia six years before the incident, first denied the claim of his wife that she had become a target of the Yakuza. However, shortly after that, he came to be convinced that he had become a target of another Yakuza. The couple took refuge in the husband's parents' home. Nevertheless, each of them thought that only he or she would be assassinated and not his or her spouse. After hospitalization, the husband was separated from his wife and soon recovered from his delusional state. However, the wife partially kept her persecutory delusion and full insight into her mental disorder could not be obtained after treatment. According to Gralnick's definition and sub-classifications of FAD, this case was diagnosed as FAD, subtype of "folie induite". DISCUSSIONS: Observed delusions of folie à deux in schizophrenic couples were classified into the following two categories, based on the subjective pronoun of the delusional statement: 1) We-type: "We are persecuted", generally observed in cases of paranoid type schizophrenia, paranoid disorder, and shared paranoid disorder; 2) I-type: "I am persecuted", observed in cases of non-paranoid schizophrenia in particular. It could be argued that the We-type suggests the establishment of a delusional community within participants not seen in the I-type delusion. However, according to clinical observations, even in We-type delusion, subjects ignored the wills and thoughts of their partners and somehow constructed the delusional community in a somewhat one-sided and egocentric way. In both We-type and I-type delusional formation, true communication was not established because of the limitation to the solipsistic view point inherent to the subjects involved. Therefore, we designated the We-type delusional view point as Paranoid Solipsism in FAD and the I-type as Schizophrenic Solipsism in FAD. According to German traditional psychiatry, We-type Paranoid Solipsism may correspond to "psychogenic" delusional formation mechanism and I-type Schizophrenic Solipsism to "endogenous" mechanism. The structural similarity between Paranoid Solipsism and the Husserlian concept of transcendental ego was also discussed. The author suggested that classical "psychogenesis" theory in psychiatry was founded on the modern concept of mind, which is inseparable from the European philosophical tradition of self-concept by Descartes and Husserl. From the Japanese literature, the author pointed out that the majority of FAD cases in Japan took the form of possession psychosis until the 1970's, and that We-type and I-type delusional formation in FAD appeared only after the late 70's. The implication of these transformations of FAD phenomenology in accordance with social structure change was briefly discussed regarding the relationship between the modernity and FAD delusion.

Adult↗

Facilitating applied information technology research.

Most healthcare organizations need to develop an understanding of the role, maturity, and utility of new information technologies. Performing this research can present a series of challenges. For example, IT staff may not know how to obtain resources; the research may show promising results but fail to be implemented; and organizations may not develop a thoughtful portfolio of research projects. To minimize these problems, applied information technology research must be managed. This paper describes the information technology research process at Partners HealthCare. The research process is a management process designed to identify important research topics, solicit IT staff proposals to investigate topics, prioritize and fund research projects, and communicate and disseminate research results. Sample research topics include the role of RFID, the impact of Internet-based e-visits, and approaches for integrating speech and direct input for clinical information systems. The paper describes the goals and activities of the research process and the role of the research council. The research proposal review process is discussed, and an inventory of approved research projects is reviewed. The paper discusses several challenges involved in creating and managing the research process.

Decision Making, Organizational↗

Hygiene partnering, Part 2.

Today's technology is full of magic and delight in the hygiene arena. Throughout the years, dental hygiene has shifted into a thriving career, and hygienists have welcomed the new role with open arms. Innovation, technology, and partnering have also taken the concept of codiagnosis and comprehensive care to a higher level in the hygiene department. These benefits, combined with more sophisticated patient-centered communication skills and team-centered management philosophies will, without doubt, secure the future of dental hygiene departments in practices worldwide. Moreover, smart practices remaining committed to attracting, training, and retaining only high-caliber staff with interdependent, overlapping talent will find the most reward in helping their patients achieve and maintain optimum oral health for a lifetime.

Consultants↗

Wntless, a conserved membrane protein dedicated to the secretion of Wnt proteins from signaling cells.

Cell-cell communication via Wnt signals represents a fundamental means by which animal development and homeostasis are controlled. The identification of components of the Wnt pathway is reaching saturation for the transduction process in receiving cells but is incomplete concerning the events occurring in Wnt-secreting cells. Here, we describe the discovery of a novel Wnt pathway component, Wntless (Wls/Evi), and show that it is required for Wingless-dependent patterning processes in Drosophila, for MOM-2-governed polarization of blastomeres in C. elegans, and for Wnt3a-mediated communication between cultured human cells. In each of these cases, Wls is acting in the Wnt-sending cells to promote the secretion of Wnt proteins. Since loss of Wls function has no effect on other signaling pathways yet appears to impede all the Wnt signals we analyzed, we propose that Wls represents an ancient partner for Wnts dedicated to promoting their secretion into the extracellular milieu.

Amino Acid Sequence↗

Evaluating the use of TalksBac, a predictive communication device for nonfluent adults with aphasia.

This paper describes the design and evaluation of a computer-based communication system called 'TalksBac' with four nonfluent adults with aphasia. Despite the increased availability of computer-based augmentative and alternative communication (AAC) devices, their use with adults with aphasia is limited as few devices have been designed for this population. The TalksBac system was designed specifically for nonfluent adults with aphasia and was used by four nonfluent aphasic individuals for a period of 9 months. The TalksBac system is word-based and exploits the ability of some nonfluent individuals with aphasia to recognize familiar words and short sentences. The system consists of two programs. Personal sentences and stories are entered into the TalksBac database by use of a 'carer program'. The 'user program' assists the nonfluent aphasic user to retrieve these prestored conversational items by offering probable items based on previous use of the system. The database has a hierarchical structure, but the links to individual items adapt automatically to reflect usage by individual users over time. Four nonfluent adults with aphasia were selected to participate in the study. Each subject was assessed by use of a battery of tests to provide pre-intervention data about their comprehension, expression and communication skills. Subjects and their carers were trained to use the TalksBac system and were involved in developing personalized databases. They were supported in use of the personalized systems for an intervention period of 9 months. At the end of this period, subjects' communication skills wre reassessed by use of a battery of tests. Clients' conversational abilities with and without the TalksBac system were also compared to see if use of TalksBac did augment their conversation and allow the aphasic partner to participate more fully within conversations. This was done by analysing videotaped conversations between subjects and non-aphasic partners. Results from the formal assessments indicated that there was little change in the underlying comprehension and expressive abilities of the subjects. An analysis of videotaped conversations showed that 1 subject was unable to carry out conversations using TalksBac independently, so the data for this subject was not included in the results of the analysis of conversations. Results from the video analysis for the remaining three subjects indicated that when using the TalksBac system, the conversational abilities of two subjects improved. The conversational abilities of the other subject were not enhanced by using the system as he had developed his own nonverbal strategies which he found to be more effective. This study has shown that TalksBac has the potential to augment the communication abilities of nonfluent adults with aphasia, who have not been able to develop their own compensatory strategies. Work continues to improve the efficiency of the software and to develop techniques to facilitate the carers' ability to generate conversational information for the system.

Aged↗

The impact on condom use of the "100% Jeune" social marketing program in Cameroon.

PURPOSE: To measure the reach of the "100% Jeune" social marketing campaign and to assess its impact on condom use and on the predictors of condom use. The campaign aims to improve condom use through intensive youth-oriented mass media and interpersonal communications and widespread distribution of subsidized condoms. METHODS: We analyzed data from the 2000 and 2002 waves of a reproductive health survey of youth aged 15-24 years, with sample sizes of 2097 and 3536, respectively. RESULTS: Exposure to campaign activities was high. During the course of the intervention, there were significant changes in perceived condom attributes and access, self-efficacy, and perceived social support. Consistent with these changes, the percentage of youth who used a condom in last sex with their regular partner increased from 32% to 45% for females (p < .05) and from 44% to 61% for males (p < .01). Additional analyses suggest that exposure to the "100% Jeune" campaign has contributed to these trends. CONCLUSIONS: The multi-faceted mass media and interpersonal communication campaign was effective for reaching youth. During the first 18 months of the campaign, significant changes occurred in perceived social support and condom use self-efficacy. Significant increases in levels of condom use also were achieved. However, the program was more effective among males than females. This indicates a need for more and possibly different campaign activities to focus specifically on risk perception and self-efficacy among females. The results also show that repeated program exposure is needed to achieve behavior change. Hence, future programs can enhance their effectiveness by using a mix of mass media and interpersonal communications to repeatedly expose youth to key campaign messages.

Adolescent↗

The ongoing evolution of behavioral couples therapy: retrospect and prospect.

Behavioral couples therapy (BCT) was first described thirty years ago, and the conceptual basis of the approach has been evolving ever since. Whilst BCT in its current form is a well established treatment for relationship problems, there are significant limitations to its efficacy, and there are a number of new developments intended to enhance the efficacy of the approach. Currently BCT primarily is a skills training therapy, targeting change in couple's interactions to promote greater relationship satisfaction. Current developments focus on broadening this traditional emphasis on changing couple interactions to greater attention to reducing negative emotional responses to partner behaviors (increasing acceptance), and increasing self-directed personal change efforts. Future developments of BCT are likely to pay greater attention to different types of couple interaction which are associated with sustained relationship satisfaction, the individual vulnerabilities partners bring to relationships, and the environmental stresses impinging upon the couple.

Adaptation, Psychological↗