Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing.

PURPOSE: As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. METHODS: To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. RESULTS: We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. CONCLUSIONS: The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient.

Patients' and partners' views of care and treatment provided for metastatic castrate-resistant prostate cancer in the UK.

OBJECTIVE: Documentations of the experiences of patients with advanced prostate cancer and their partners are sparse. Views of care and treatment received for metastatic castrate-resistant prostate cancer (mCRPC) are presented here. METHODS: Structured interviews conducted within 14 days of a systemic therapy for mCRPC starting and 3 months later explored the following: treatment decisions, information provision, perceived benefits and harms of treatment, and effects of these on patients' and partners' lives. RESULTS: Thirty-seven patients and 33 partners recruited from UK cancer centres participated. The majority of patients (46%) reported pain was their worst symptom and many wanted to discuss its management (baseline-50%; 3 months-33%). Patients and partners believed treatment would delay progression (>75%), improve wellbeing (33%), alleviate pain (≈12%) and extend life (15% patients, 36% partners). At 3 months, most men (42%) said fatigue was the worst treatment-related side effect (SE), 27% experienced unexpected SEs and 54% needed help with SEs. Most patients received SE information (85% written; 75% verbally); many additionally searched the Internet (33% patients; 55% partners). Only 54% of patients said nurse support was accessible. CONCLUSION: Pain and other symptom management are not optimal. Increased specialist nurse provision and earlier palliative care links are needed. Dedicated clinics may be justified.

Cancer survivors' experiences of a community-based cancer-specific exercise programme: results of an exploratory survey.

PURPOSE: Exercise levels often decline following cancer diagnosis despite growing evidence of its benefits. Treatment side effects, older age, lack of confidence and opportunity to exercise with others in similar circumstances influence this. Our study explored the experiences of people attending a cancer-specific community-based exercise programme (CU Fitter™). METHODS: A survey distributed to those attending the programme gathered demographic/clinical information, self-reported exercise levels, information provision and barriers to/benefits of exercise. RESULTS: Sixty surveys were evaluable from 65/100 returned (62% female, 68% > 60 years, 66% breast/prostate cancer). Most (68%) were receiving treatment. Sixty-eight percent attended classes once or twice weekly. Fifty-five percent received exercise advice after diagnosis, usually from their hospital doctor/nurse. More (73%) had read about exercising, but less used the Internet to source information (32%). Self-reported exercise levels were higher currently than before diagnosis (p = 0.05). Forty-eight percent said their primary barrier to exercising was the physical impact of cancer/treatment. Improving fitness/health (40%) and social support (16%) were the most important gains from the programme. Many (67%) had made other lifestyle changes and intented to keep (50%) or increase (30%) exercising. CONCLUSIONS: This community-based cancer-specific exercise approach engaged people with cancer and showed physical, psychological, and social benefits. IMPLICATIONS FOR CANCER SURVIVORS: Community-grown exercise initiatives bring cancer survivors together creating their own supportive environment. Combining this with instructors familiar with the population and providing an open-ended service may prove particularly motivating and beneficial. Further work is required to provide evidence for this.

Quality of life and communication in orthognathic treatment.

OBJECTIVE: The primary aim was to determine what, if any, relationships exist between communication and quality of life in patients receiving orthognathic treatment since this has not been explored. A secondary aim was to compare the Quality of Life (QoL) of a pre-treatment sample with those at 2 years post-surgery. DESIGN: A cross-sectional questionnaire method was used. SETTING: Outpatient clinics providing orthognathic treatment at four UK hospital sites. PARTICIPANTS: Two separate samples of pre-treatment (n = 73) and 2-year post-surgery (n = 78) patients participated in the study. METHODS: At clinic appointments, all eligible patients were invited to complete the Orthognathic Quality of Life Questionnaire (OQLQ), a previously validated condition-specific quality of life measure. At the same time, participants at the 2-year post-surgery stage also completed a second short questionnaire, the Communication Assessment Tool-Team (CAT-T), where they rated the quality of communication they had received during treatment. RESULTS: One hundred and fifty-one complete responses were received. The average age was 24.5 years (S.D. 9.77) and the majority (67%) were female in both groups. Statistically significant associations were found between QoL and quality of communication in the treated sample. Findings also showed a comparatively poorer QoL for the pre-treatment participants. This reduced QoL was more pronounced in females than males for all aspects except dentofacial appearance. CONCLUSIONS: There was an improvement in QoL for patients at 2 years post-surgery compared to pre-treatment. There is an association between QoL and quality of communication as reported by participants at 2 years post-surgery. These novel findings are similar to outcomes in other patient settings such as oncology, but further investigation is required to establish the direction of cause and effect.

Patients' and staff's experiences of multidisciplinary follow-up for high-grade glioma after radical radiotherapy.

Meeting the complex needs of patients with high-grade glioma requires multidisciplinary input. How best to provide care after initial treatment ends is contentious. This study explored the experiences of patients and staff at one UK centre where regular multidisciplinary clinics and brain scanning is provided. In-depth interviews conducted with 10 patients and six staff were transcribed and analysed qualitatively. Patients reported: supportive, individualised care with familiar staff; good communication; that regular scanning was reassuring. Staff believed that team follow-up facilitated immediate decision-making and referral, and reduced visits. They felt that patients value seeing their scans. Patients and staff described positive and negative experiences of multidisciplinary follow-up. There is need to investigate the impact of different approaches to ongoing care.

Psychosocial and supportive-care needs in high-grade glioma.

The diagnosis and management of high-grade glioma has profound effects on patients and their families. Guidance issued by the UK National Institute of Health and Clinical Excellence in 2006 highlighted the lack of good studies of palliative care for patients with this disease. We describe new studies published from 2000 to 2007. High-grade glioma is undoubtedly a challenging research area, and many studies are poorly defined and have small and biased samples. Nevertheless the data reveal this to be a heterogeneous group of patients with complex needs that differ from those of patients with other cancers. Improvements in care require a united input from neurology and neurosurgery, oncology, and palliative care. The main research priorities are the development and assessment of psychosocial or supportive interventions and the investigation of service provision of specialist palliative and end-of-life care, which have hitherto been neglected.

Gene expression profiling of nonhuman primates exposed to aerosolized Venezuelan equine encephalitis virus.

Host responses to Venezuelan equine encephalitis viruses (VEEV) were studied in cynomolgus macaques after aerosol exposure to the epizootic virus. Changes in global gene expression were assessed for the brain, lungs, and spleen. In the brain, major histocompatibility complex (MHC) class I transcripts were induced, while the expression of S100b, a factor associated with brain injury, was inhibited, as was expression of the encephalitogenic gene MOG. Cytokine-mediated signals were affected by infection, including those involving IFN-mediated antiviral activity (IRF-7, OAS, and Mx transcripts), and the increased transcription of caspases. Induction of a few immunologically relevant genes (e.g. IFITM1 and STAT1) was common to all tested tissues. Herein, both tissue-specific and nontissue specific transcriptional changes in response to VEEV are described, including induction of IFN-regulated transcripts and cytokine-induced apoptotic factors, in addition to cellular factors in the brain that may be descriptive of the health status of the brain during the infectious process. Altogether, this work provides novel information on common and tissue-specific host responses against VEEV in a nonhuman primate model of aerosol exposure.

Application of current allergy assessment guidelines to next-generation biotechnology-derived crops.

In any single day, our immune systems are exposed to thousands of different proteins from the environment and the food we eat. In a portion of the human population, some of those proteins will stimulate the immune systems to synthesize immunoglobulin E in an allergenic response. The discrepancy between the vast numbers of proteins we encounter and the limited number of proteins that actually become allergens have led scientists on a quest to discover what unique features exist that make proteins destined to be allergens. The information gained from these studies has led to an allergy assessment strategy that characterizes the potential allergenicity of biotechnology products prior to their commercialization. This testing strategy appears to be effective as shown by the fact that there have been no clinically documented food allergic reactions to any of the biotechnology proteins introduced into food crops, to date. The next generation of biotechnology products will most likely contain more complex traits, including nutritionally enhanced food crops, and the question arises as to whether the current allergy assessment strategy will be sufficient to protect the health of the consuming public. In this paper, we discuss general allergen characteristics in order to better understand how proteins become allergens, summarize the current allergy assessment process, evaluate the different aspects of this process for their adequacy in determining the allergenic potential of engineered functional foods, and, finally, we assess the possibility of new technologies having a positive impact on the allergy assessment of nutritionally enhanced crops.

Uterine rupture in a primigravid patient with an unscarred bicornuate uterus at term.

BACKGROUND: Uterine rupture of an unscarred primigravid uterus is an exceedingly rare event. Cases of spontaneous rupture of an unscarred bicornuate uterus have been reported, but typically occur in the first or second trimester. CASE: A 28-year-old primigravida at 37 weeks gestation with a known bicornuate uterus and no prior surgery underwent an emergent cesarean section after presenting with severe abdominal pain and signs of fetal compromise. She was found to have a uterine rupture with the fetus free in the abdomen accompanied by a large hemoperitoneum. Both mother and baby did well postoperatively. CONCLUSION: Bicornuate uterus may be an independent risk factor for uterine rupture, which can occur in primigravid patients and at any gestation.

Patient-reported outcome measures of the impact of cancer on patients' everyday lives: a systematic review.

PURPOSE: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients' everyday lives such as finances, work and family roles. METHODS: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. RESULTS: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients' roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. CONCLUSIONS: Impact on some important parts of patients' everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. IMPLICATIONS FOR CANCER SURVIVORS: Factors such as finances, employment and responsibility for caring for dependants (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients' social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported.

Impact of intestinal colonization and invasion on the Entamoeba histolytica transcriptome.

A genome-wide transcriptional analysis of Entamoeba histolytica was performed on trophozoites isolated from the colon of six infected mice and from in vitro culture. An Affymetrix platform gene expression array was designed for this analysis that included probe sets for 9435 open reading frames (ORFs) and 9066 5' and 3' flanking regions. Transcripts were detected for > 80% of all ORFs. A total of 523 transcripts (5.2% of all E. histolytica genes) were significantly changed in amebae isolated from the intestine on Days 1 and 29 after infection: 326 and 109 solely on Days 1 and 29, and 88 on both days. Quantitative real-time reverse transcriptase PCR confirmed these changes in 11/12 genes tested using mRNA isolated from an additional six mice. Adaptation to the intestinal environment was accompanied by increases in a subset of cell signaling genes including transmembrane kinases, ras and rho family GTPases, and calcium binding proteins. Significant decreases in mRNA abundance for genes involved in glycolysis and concomitant increases in lipases were consistent with a change in energy metabolism. Defense against bacteria present in the intestine (but lacking from in vitro culture) was suggested by alterations in mRNA levels of genes similar to the AIG1 plant antibacterial proteins. Decreases in oxygen detoxification pathways were observed as expected in the anaerobic colonic lumen. Of the known virulence factors the most remarkable changes were a 20-35-fold increase in a cysteine proteinase four-like gene, and a 2-3-fold decrease in two members of the Gal/GalNAc lectin light subunit family. Control of the observed changes in mRNA abundance in the intestine might potentially rest with four related proteins with DNA binding domains that were down-regulated 6-16-fold in the intestinal environment. In conclusion, the first genome-wide analysis of the transcriptome of E. histolytica demonstrated that the vast majority of genes are transcribed in trophozoites, and that in the host intestine trophozoites altered the expression of mRNAs for genes implicated in metabolism, oxygen defense, cell signaling, virulence, antibacterial activity, and DNA binding.

Information needs and experiences: an audit of UK cancer patients.

As part of a multi-centred UK study evaluating multidisciplinary team communication, the information needs, decision making preferences and information experiences of 394 cancer patients were audited. A majority of patients (342/394, 87%) wanted all possible information, both good and bad news. Assuming that all clinicians had equal skill, the majority of patients (350/394, 89%) expressed no preference for the sex of their doctor. The largest proportion of patients (153/394, 39%) wanted to share responsibility for decision making, preference was significantly influenced by age (chi2=17.42, df=4 P=0.002) with older patients more likely to prefer the doctor to make the decisions. A majority of patients reported receiving information regarding their initial tests (313/314, 100%), diagnosis (382/382, 100%), surgery (374/375, 100%) and prognosis (308/355, 87%), fewer recalled discussions concerning clinical trials (119/280, 43%), family history (90/320, 28%) or psychosocial issues, notably sexual well-being (116/314, 37%). Cancer patients want to be fully informed and share decision making responsibility, but do not report receiving sufficient information in all areas. Multidisciplinary cancer teams need to ensure that where appropriate, someone provides patients with information about clinical trials, familial risk and psychosocial issues. Regular audits highlight gaps and omissions in the information given to patients.

Genetically engineered crops: from idea to product.

Genetically engineered crops were first commercialized in 1994 and since then have been rapidly adopted, enabling growers to more effectively manage pests and increase crop productivity while ensuring food, feed, and environmental safety. The development of these crops is complex and based on rigorous science that must be well coordinated to create a plant with desired beneficial phenotypes. This article describes the general process by which a genetically engineered crop is developed from an initial concept to a commercialized product.

Systematic review of supportive care needs in patients with primary malignant brain tumors.

In adults, primary malignant brain tumors (PMBT) are rare, but they have a devastating impact and the chances for survival are limited. UK clinical guidance on supportive care for patients with brain and central nervous system tumors was published in 2006 and relied on very limited evidence. The current article reviews literature from 2005 through 2011 on the psychosocial and supportive needs of patients with PMBT and their families or caregivers. Searches were conducted in PubMed, Web of Science, Psychinfo, Cochrane, Scopus, ASSIA, and Sciencedirect. The search initially yielded 6220 articles, of which 60 were found to be eligible (1%). Eleven qualitative and 49 quantitative studies are reviewed here and mapped onto the structure of the existing UK clinical guidance. Studies suggest rates of depression and anxiety up to 48% in patients and up to 40% in caregivers, with many unmet needs and dissatisfaction with health care provider communication and information. Cognitive deficits increase as the disease progresses, hampering communication and decision-making. A range of neurological and physical symptoms at the end of life need recognition. Some successful supportive and neuropsychological interventions are reported. Although the volume of available studies has increased since UK guidance, many remain observational in nature, with few trials of interventions. However, this review provides an up to date resource for clinicians involved with patients with PMBT, describing current knowledge on patients' psychosocial needs, the type of care which has been found to be beneficial, and highlighting areas where more research needs to be done.

Supportive follow-up in patients treated with radical intent for high-grade glioma.

UNLABELLED: Ongoing supportive follow-up for patients with malignant glioma lacks good evidence to define and guide practice, and certain approaches have previously been criticized. In the UK, it commonly involves routine hospital visits with imaging to monitor treatment effects and detect disease progression. AIMS: Through use of an observational study evaluate and compare oncologist-led follow-up with a multidisciplinary group follow-up method from the perspective of patients and caregivers. MATERIALS & METHODS: A total of 40 patients, and 32 of their caregivers, were recruited 3 months after completing radical radiotherapy treatment. Face-to-face interviews conducted at home with patients gathered information about access to and experiences of follow-up services. Standardized questionnaires measured patients' quality of life and unmet care needs, and caregivers' psychological wellbeing. Assessment was repeated three times over a 6-month period. RESULTS: Inevitable attrition left 26/40 patients and 19/32 caregivers with complete data. Most (65%) patients' quality of life improved or was maintained over the study period. However, psychological support for patients and caregivers was suboptimal, notably 56% of caregivers had probable psychiatric morbidity. Though few significant differences were found between the two follow-up methods, multidisciplinary follow-up provided better continuity of care and more efficient test result provision. CONCLUSION: Innovative interventions are required to ameliorate psychological distress in patients and caregivers.

A UK-wide survey of follow-up practices for patients with high-grade glioma treated with radical intent.

RATIONALE AND OBJECTIVE: High-grade glioma profoundly affects patients and their families. The best ongoing care for patients completing radical treatment is uncertain. To address this issue a UK-wide audit surveying the follow-up practices of multidisciplinary cancer teams was conducted. METHOD: An online survey package was used with a paper version available. RESULTS: Of 102 clinicians approached 86 replied, a response rate of 84%. Three-monthly outpatient department appointments led by an oncologist and a specialist nurse were the norm, but more controversially, some centres conduct joint clinics with the whole neurosurgical/oncology team present or available. Nurse-led telephone follow-up in place of hospital visits is uncommon. Regular scanning is conducted despite the clinical benefits being contentious. Access to a range of allied services providing supportive care is considered, but the actual levels of need and the efficiency with which they are delivered require further investigation. CONCLUSIONS: The picture of UK follow-up practices revealed by this survey demonstrates that research is now needed to determine what preferences patients and families have for follow-up and their satisfaction with these.

What oncologists believe they said and what patients believe they heard: an analysis of phase I trial discussions.

UNLABELLED: PURPOSE; Evaluation of the communication and informed consent process in phase I clinical trial interviews to provide authentic, practice-based content for inclusion in a communication skills training intervention for health care professionals. PATIENTS AND METHODS: Seventeen oncologists and 52 patients from five United Kingdom cancer centers consented to recording of phase I trial discussions. Following each consultation, clinicians completed questionnaires indicating areas they felt they had discussed, and researchers conducted semistructured interviews with patients examining their recall and understanding. Patients and oncologists also completed the Life Orientation Test-Revised questionnaire, measuring predisposition toward optimism. Independent researchers coded the consultations identifying discussion of key information areas and how well this was done. Observed levels of agreement were analyzed for each consultation between oncologist-coder, oncologist-patient, and patient-coder pairs. RESULTS: In several key areas, information was either missing or had been explained but was interpreted incorrectly by patients. Discussion of prognosis was a frequent omission, with patients and coders significantly more likely to agree that oncologists had not discussed it (odds, 4.8; P < .001). In contrast, coders and oncologists were more likely to agree that alternate care plans to phase I trial entry had been explained (odds, 2.5; P = .023). CONCLUSION: These data indicate that fundamental components of communication and information sharing about phase I trial participation are often missing from interviews. Important omissions included discussion of prognosis and ensuring patient understanding about supportive care. These findings will inform educational initiatives to assist communication about phase I trials.

Genome sequence of Brucella abortus vaccine strain S19 compared to virulent strains yields candidate virulence genes.

The Brucella abortus strain S19, a spontaneously attenuated strain, has been used as a vaccine strain in vaccination of cattle against brucellosis for six decades. Despite many studies, the physiological and molecular mechanisms causing the attenuation are not known. We have applied pyrosequencing technology together with conventional sequencing to rapidly and comprehensively determine the complete genome sequence of the attenuated Brucella abortus vaccine strain S19. The main goal of this study is to identify candidate virulence genes by systematic comparative analysis of the attenuated strain with the published genome sequences of two virulent and closely related strains of B. abortus, 9-941 and 2308. The two S19 chromosomes are 2,122,487 and 1,161,449 bp in length. A total of 3062 genes were identified and annotated. Pairwise and reciprocal genome comparisons resulted in a total of 263 genes that were non-identical between the S19 genome and any of the two virulent strains. Amongst these, 45 genes were consistently different between the attenuated strain and the two virulent strains but were identical amongst the virulent strains, which included only two of the 236 genes that have been implicated as virulence factors in literature. The functional analyses of the differences have revealed a total of 24 genes that may be associated with the loss of virulence in S19. Of particular relevance are four genes with more than 60 bp consistent difference in S19 compared to both the virulent strains, which, in the virulent strains, encode an outer membrane protein and three proteins involved in erythritol uptake or metabolism.