Diagnosis, medication, and surgical management for patients with trigeminal neuralgia: a qualitative study.

BACKGROUND: Trigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients' qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care. METHODS: Participants with TN (n = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts. RESULTS: The impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts. CONCLUSIONS: Key issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.

Patient attitudes towards prenatal diagnostic testing for inherited retinal disease.

OBJECTIVE: To explore factors that influence decision-making in relation to prenatal diagnostic testing (PDT) for inherited retinal disease (IRD). METHOD: Semi-structured interviews were conducted with 50 adults with IRD, selected from a larger sample to provide a diversity of backgrounds and opinions on genetic testing. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Mostly participants supported PDT, believing that it would provide information to help them prepare for and plan the future care of the child and the potential for early access to emerging therapies. Opposition to PDT stemmed from its use to justify termination of pregnancy, with participants feeling that it was not justified as they retained a good quality of life despite their visual impairment. Participants raised concerns about the risk of PDT and the accuracy of the results. However, most suggested that it should be available as an option for others, but for specific reasons and not as a part of routine care. CONCLUSION: The variation in attitudes towards PDT and uncertainty about the risk and accuracy of results suggest that individuals at risk of having a child with IRD should have access to genetic counselling to support decision making.

Willingness to pay for genetic testing for inherited retinal disease.

This paper investigates the willingness of adults with inherited retinal disease to undergo and pay for diagnostic genetic testing in three hypothetical scenarios and to explore the factors that influence decision making. Fifty patients were presented with three scenarios whereby genetic testing provided increasing information: confirming the diagnosis and inheritance pattern alone, providing additional information on future visual function, and identifying in addition a new treatment which could stabilise their condition. Willingness to pay (WTP) was elicited using an iterative bidding game. Regression analysis was used to investigate the probability of agreeing to and paying for testing. Qualitative data were also reviewed to provide a comprehensive understanding of WTP and decision making. The majority of participants agreed to undergo genetic testing in each of the three scenarios. Scenario 2 was the least acceptable with 78% of participants agreeing to genetic testing. The probability of agreeing to genetic testing decreased with age. Between 72 and 96% of participants reported a WTP for genetic testing. Average WTP was £539, £1516, and £6895 for scenarios 1, 2, and 3 respectively. Older participants and participants with higher incomes were willing to pay more for testing. Qualitative data provided additional detail about the rationale behind participants' decisions. The study suggests that patients with inherited retinal disease were willing to undergo and to pay for diagnostic genetic testing, suggesting that they valued the information it may provide. However, several patients preferred not to receive prognostic information and were less willing to pay for genetic testing that yielded such detail.

Current understanding of genetics and genetic testing and information needs and preferences of adults with inherited retinal disease.

Advances in sequencing technology and the movement of genetic testing into all areas of medicine will increase opportunities for molecular confirmation of a clinical diagnosis. For health-care professionals without formal genetics training, there is a need to know what patients understand about genetics and genetic testing and their information needs and preferences for the disclosure of genetic testing results. These topics were explored during face-to-face interviews with 50 adults with inherited retinal disease, selected in order to provide a diversity of opinions. Participants had variable understanding of genetics and genetic testing, including basic concepts such as inheritance patterns and the risk to dependents, and many did not understand the term 'genetic counselling'. Most were keen for extra information on the risk to others, the process for genetic testing and how to share the information with other family members. Participants were divided as to whether genetic testing should be offered at the time of the initial diagnosis or later. Many would prefer the results to be given by face-to-face consultation, supplemented by further information in a format accessible to those with visual impairment. Health-care professionals and either leaflets or websites of trusted agencies were the preferred sources of information. Permission should be sought for disclosure of genetic information to other family members. The information needs of many patients with inherited retinal disease appear to be unmet. An understanding of their information needs and preferences is required to help health-care professionals provide optimal services that meet patient expectations.

Overcoming barriers to research utilization and evidence-based practice among staff nurses.

Several barriers exist to research utilization among staff nurses. Two barriers that appear in the research are lack of knowledge about research utilization and perceived lack of organizational support. The goal of this article is to present recommendations to overcome these barriers so that staff development educators can promote research utilization and evidence-based practice.

The expected psychiatric impact of detention in Guantanamo Bay, Cuba, and related considerations.

What are the likely mental and related physical health consequences of prolonged exposure to common stressors to detainees at Guantanamo Bay, Cuba? Significant distress leads to high rates of psychiatric disorders, medical problems, and functional impairments. The consequences are severe, physically and psychologically, affecting the individual, his or her family, and the culture at large. Damaging conditions endured by detainees are multiple and severe and are reviewed here in detail. The author identifies parallels between Guantanamo detainees and similarly mistreated populations (e.g., prisoners of war, asylum seekers, prisoners) to draw inferences from existing research regarding likely outcomes for Guantanamo detainees. Protective factors normally present are systematically disrupted at Guantanamo. Overall, it is likely that detainees and their families are experiencing significant mental and physical health problems as a result of overlapping severe and chronic stressors related to detention and that this will worsen over time, particularly in the absence of appropriate assessment and treatment. The author addresses political and ethical factors, as well as basic implications for assessment, treatment, and advocacy, although these are not the focus of the article. Researchers and clinicians will face challenges in providing care for this population and understanding the long-term effects of such mistreatment. Sources reviewed are current up to September 2009.

Induction of compulsive-like washing by blocking the feeling of knowing: an experimental test of the security-motivation hypothesis of obsessive-compulsive disorder.

BACKGROUND: H. Szechtman and E. Woody (2004) hypothesized that obsessive-compulsive disorder results from a deficit in the feeling of knowing that normally terminates thoughts or actions elicited by security motivation. To test the plausibility of this proposed mechanism, an experiment was conducted to produce an analog of washing in obsessive-compulsive disorder by eliciting a scenario of potential harm and using hypnosis to block changes in internally generated feelings that would normally occur during washing. RESULTS: Participants reacted with increased disgust, anxiety, and heart rate to their mental images of contamination and potential danger. As predicted, high but not low hypnotizable participants showed a significant prolongation of washing when change in feelings during washing was blocked hypnotically. CONCLUSION: Results show that blocking the affective signal that is normally generated during security-related behaviors, such as washing, leads to prolonged performance of these behaviors. This finding lends support to the plausibility of the proposed model of obsessive-compulsive disorder.