Consumer experiences of shame in clinical encounters for breast cancer treatment. "Who do you think you are- Angelina Jolie?"

BACKGROUND: Shame is a powerful negative emotion that has the potential to affect health. Due to the intimate nature of breast cancer treatment and its impact on body image, it is hypothesised that shame may be experienced during treatment. The aim of this study was to explore shame experiences related to clinical encounters for breast cancer treatment. METHODS: People with a lived experience of breast cancer were invited to anonymously share their stories of shame through an online survey. Using qualitative methodology, the stories were examined, and themes identified. PARTICIPANTS: Participants were members of the consumer organisation Breast Cancer Network Australia. RESULTS: Stories were contributed by 38 participants. Most (n = 28, 73.7 %) were >5 years post-diagnosis. Shame was experienced in a range of clinical settings (consulting rooms, wards, operating theatres, radiotherapy departments). They involved a different health professionals (oncologists, surgeons, nurses, radiation therapists, psychologists.) Five themes were identified: (1) Body shame (sub-themes: Naked/vulnerable and Weight), (2) Communication (subthemes: Lack of compassion/impersonal manner and Not listening), (3) Being blamed (subthemes: diagnosis and complications), (4) Feeling unworthy (subthemes: Burden to staff and Unworthy of care), (5) Judgement for treatment choices. CONCLUSIONS: Shame can be experienced in a range of situations, from scrutiny of the naked body to comments from health professionals. The impact of these experiences is profound, and the feelings of shame are carried for many years. These findings can inform strategies to support consumers and educate health professionals with the aim of reducing harm related to cancer treatment.

Psychological intervention (ConquerFear) for treating fear of cancer recurrence: mediators and moderators of treatment efficacy.

PURPOSE: ConquerFear is an efficacious intervention for fear of cancer recurrence (FCR) that demonstrated greater improvements than an attention control (relaxation training) in a randomized controlled trial. This study aimed to determine mediators and moderators of the relative treatment efficacy of ConquerFear versus relaxation. METHODS: One hundred and fifty-two cancer survivors completed 5 therapy sessions and outcome measures before and after intervention and at 6 months' follow-up. We examined theoretically relevant variables as potential mediators and moderators of treatment outcome. We hypothesized that metacognitions and intrusions would moderate and mediate the relationship between treatment group and FCR level at follow-up. RESULTS: Only total FCR score at baseline moderated treatment outcome. Participants with higher levels of FCR benefited more from ConquerFear relative to relaxation on the primary outcome. Changes in metacognitions and intrusive thoughts about cancer during treatment partially mediated the relationship between treatment group and FCR. CONCLUSIONS: These results show that ConquerFear is relatively more effective than relaxation for those with overall higher levels of FCR. The mediation analyses confirmed that the most likely mechanism of treatment efficacy was the reduction in unhelpful metacognitions and intrusive thoughts during treatment, consistent with the theoretical framework underpinning ConquerFear. IMPLICATIONS FOR CANCER SURVIVORS: ConquerFear is a brief, effective treatment for FCR in cancer survivors with early-stage disease. The treatment works by reducing intrusive thoughts about cancer and changing beliefs about worry and is particularly helpful for people with moderate to severe FCR.

Quality of life assessment in patients treated for metastatic cutaneous squamous cell carcinoma of the head and neck.

BACKGROUND: Treatment for metastatic cutaneous head and neck squamous cell carcinoma is usually multimodal and associated with morbidity. This study aimed to evaluate the impact of treatment on patients' quality of life. METHOD: Cross-sectional survey of 42 patients (35 men, 7 women) at least 6 months after metastatic cutaneous head and neck squamous cell carcinoma treatment, using two standardised quality of life questionnaires: the Functional Assessment of Cancer Therapy - Head and Neck questionnaire and the Facial Disability Index, with statistical analysis to identify potential predictors of outcome. RESULTS: Female gender correlated with significantly lower Facial Disability Index physical function scores (p = 0.017). Alcohol consumption correlated with significantly better scores for Functional Assessment social well-being (p = 0.016), general total score (p = 0.041) and overall total score (p = 0.033), and for Facial Disability Index physical function (p = 0.034). Marital status, education, employment, chemotherapy, time from last treatment, parotidectomy and facial nerve sacrifice did not affect quality of life. The commonest patient complaints were dry mouth (76 per cent), altered voice quality and strength (55 per cent), and physical appearance (45 per cent). CONCLUSION: Female gender predicts worse quality of life, while alcohol consumption (versus none) predicted for better quality of life.

Comparison of three assays for detection of Chlamydia trachomatis and Neisseria gonorrhoeae in SurePath Pap samples and the role of pre- and postcytology testing.

Chlamydia trachomatis and Neisseria gonorrhoeae are common causes of sexually transmitted infections, and there is interest in screening SurePath liquid-based Pap (L-Pap) samples with Aptima Combo 2 (AC2), Amplicor (AMP), and ProbeTec ET (PT) assays. SurePath L-Pap samples and a cervical swab (CS) were collected from 394 women attending health clinics in Hamilton and Toronto, ON, Canada. L-Pap samples were tested with the three assays prior to being processed for cytology, and the CS sample was tested with AC2. The prevalence of C. trachomatis was 8.9%, and that of N. gonorrhoeae was 1.5%. By using the positives from CS testing, as well as CS negatives corresponding to L-Pap samples that tested positive in 2 of 3 assays, the sensitivities of AC2, AMP, and PT for C. trachomatis in precytology samples were calculated to be 97.1% (34 of 35 positive samples were detected), 91.4% (32 of 35 were detected), and 77.1% (27 of 35 were detected), respectively. Six women were infected with N. gonorrhoeae. After cytology processing, the results of testing the remaining liquid in the L-Pap vial and the cell-enriched fraction for C. trachomatis by AC2 showed positive agreements of 98.9% (kappa [k], 0.93) and 98.7% (k, 0.92), respectively, with the results of testing precytology L-Pap samples. Although all testing showed high specificity, testing for C. trachomatis by AC2 was significantly more sensitive than testing by PT for SurePath samples (P = 0.02). Newer versions of AMP (Cobas 4800) and PT (Q(x) with XTR technology) need published evaluations for detecting C. trachomatis and N. gonorrhoeae in L-Pap samples. C. trachomatis testing can be performed with similar results on pre- and postcytology SurePath samples.

Performance of a New HPV Cervi-Collect Collection and Transportation Kit.

Background. Liquid-based Pap (L-Pap) media are used for Pap and human papillomavirus (HPV) testing. Objectives. To compare RealTime High Risk (HR) HPV testing of a new collection kit (Cervi-Collect) and PreservCyt L-Pap specimens. To determine ease of use and safety of Cervi-Collect. Methods. L-Pap samples (n = 203) were tested with HC2 and RealTime HR HPV and Cervi-Collect with RealTime HR HPV. Discordant samples were genotyped. Results. L-Pap and Cervi-Collect specimens tested by RealTime HR HPV showed 93.1% agreement (Kappa 0.86). RealTime HR HPV and HC2 on L-Pap had 90.3% agreement (Kappa 0.80). RealTime HR HPV on Cervi-Collect and HC2 on L-Pap showed 88.2% agreement (Kappa 0.76). Sixteen of 21 samples which were HC2 negative and RealTime HR HPV positive on L-Pap or Cervi-Collect contained HR HPV genotypes. Eleven healthcare collectors were in strong agreement on a usability and safety questionnaire. Conclusion. Cervi-Collect samples were easy to collect and showed strong agreement with L-Pap samples tested with RealTime HR HPV or HC2.

Mutations in the FUS/TLS gene on chromosome 16 cause familial amyotrophic lateral sclerosis.

Amyotrophic lateral sclerosis (ALS) is a fatal degenerative motor neuron disorder. Ten percent of cases are inherited; most involve unidentified genes. We report here 13 mutations in the fused in sarcoma/translated in liposarcoma (FUS/TLS) gene on chromosome 16 that were specific for familial ALS. The FUS/TLS protein binds to RNA, functions in diverse processes, and is normally located predominantly in the nucleus. In contrast, the mutant forms of FUS/TLS accumulated in the cytoplasm of neurons, a pathology that is similar to that of the gene TAR DNA-binding protein 43 (TDP43), whose mutations also cause ALS. Neuronal cytoplasmic protein aggregation and defective RNA metabolism thus appear to be common pathogenic mechanisms involved in ALS and possibly in other neurodegenerative disorders.

Quality of life and well-being of patients with myasthenia gravis.

The cardinal symptom of myasthenia gravis (MG) is weakness of voluntary muscles, a feature that may restrict full participation in life activities. In turn, such limitations may negatively affect quality of life (QOL) and well-being among individuals with the disease. In the present study, we administered a measure of QOL to 27 patients with generalized MG. Results revealed that functional status was negatively impacted in the domains of physical functioning, energy, and general health. However, a clinically meaningful difference was evident only on perceived ability to accomplish physical tasks. The results suggest that although MG requires accommodations in physical activities, general QOL and well-being does not differ markedly from the general population.

What have we learned about cognition in myasthenia gravis?: a review of methods and results.

Most individuals with myasthenia gravis (MG) complain of cognitive impairment, but empirical studies of cognition in MG have produced mixed results. In the present review, we critically examined the methodology and results of previous studies that investigated cognition in MG. Results from our review revealed that none of the studies met at least 50% of criteria under review. The most common shortcomings of previous studies included small sample size, no exclusion for visual difficulties in patients, inadequate assessment of mood, and poor control for prednisone use. Despite these methodological difficulties, mild impairments on measures of learning have been identified. These findings need to be replicated with adequate control of potential confounds before any conclusions can be made regarding cognition in this disease. Suggestions for design of future studies are provided.

Effects of head and neck radiation therapy on vocal function.

OBJECTIVE: Radiotherapy (RT) is used to treat a variety of head and neck malignancies. The larynx may receive high radiation doses even in the absence of disease. The effects of RT on the nondiseased larynx are unknown. This study will evaluate subjective and objective parameters of vocal function in patients treated with RT for nonlaryngeal malignancies. DESIGN: Cross-sectional observational study. METHODS: Videostroboscopic, aerodynamic, and acoustic analyses were performed. Results were compared to age- and gender-matched controls. Self-assessment of voice quality was measured using the Voice Handicap Index. RESULTS: A majority of patients demonstrated increased supraglottal activity (i.e., ventricular fold constriction) during stroboscopic evaluation. Significant differences compared to normative data were found in many aerodynamic and acoustic parameters. A substantial proportion (27%) of patients reported significant voice handicap. Younger patients reported greater handicap, and voice quality was worse with time. CONCLUSIONS: Significant objective and subjective changes in vocal function occur in patients radiated for nonlaryngeal head and neck malignancies. Young patients may have the worst impact, and vocal dysfunction may increase with time. A prospective study of this patient population should include a baseline voice quality assessment.

Optometric glaucoma referrals--measures of effectiveness and implications for screening strategy.

The effectiveness of disease screening is conventionally evaluated using the epidemiological indices of sensitivity and specificity, which measure the association between screening test results and final diagnoses of all the patients screened. The effectiveness of optometric glaucoma referrals cannot be measured using such indices because diagnoses are obtained only on patients who are referred, while the true disease status of those not referred remains unknown. Instead, glaucoma referral effectiveness has been evaluated using measures of 'detection rate'--the proportion of those screened who are correctly referred, and 'referral accuracy'--the proportion of those referred who are correctly referred occurrence. Examination of these operational measures shows that their obtainable values and, hence, their interpretation are influenced by the total proportions of diseased and referred patients, one or both of which will generally be unavailable in evaluating samples of referrals. On the other hand, if valid estimates of these proportions can be obtained from other sources, it is possible to rescale detection rate and referral accuracy to take account of them. This rescaling produces a pair of weighted kappa coefficients, chance-corrected measures of association between referral and diagnosis, which provide a better indication of true referral effectiveness than other measures. An important consequence of this approach is that it provides a clear quantitative illustration of the need for a dual strategy to improve the overall quality of optometric glaucoma screening; widespread adoption of more comprehensive modes of screening to improve accuracy, together with a significant increase in the total numbers of patients screened to improve detection. In order for detection rates to reach desirable levels, the total number of referrals in any sub-population of patients must match or exceed the number of patients with disease. This analysis confirms quantitatively that which is intuitively obvious; not only that glaucoma awareness and uptake of screening opportunities must be encouraged in all patients over 40 years of age, but also that the older and/or more at risk patients are, the greater is their need to take advantage of glaucoma screening.

Severity of mood, self-evaluative, and vegetative symptoms of depression in myasthenia gravis.

The mood, self-evaluative, and vegetative symptoms of depression in myasthenia gravis were assessed. The frequency of depression was significantly elevated only when assessed by measuring vegetative symptoms. These findings suggest that mood in neuroimmune disorders should be assessed with scales that separate the different dimensions of depression.

Cognitive dysfunction in individuals with myasthenia gravis.

In the present study we administered a battery of cognitive measures that examined attention, response fluency, information processing, and verbal and visual learning and retention to 28 individuals with generalized myasthenia gravis (MG) and 18 demographically similar control subjects. Results revealed that MG patients performed significantly more poorly than control subjects on the measures of response fluency, information processing and most measures of verbal and visual learning. Significant group differences were not evident on the measure of attention span or on the indices of retention of information. Cognitive performances of the MG group were not related to mood disturbance, disease duration, or daily dose of prednisone. While these results suggest central involvement in MG, previous studies have not provided evidence that MG antibodies bind to central nicotinic receptors. Possible alternative mechanisms underlying cognitive dysfunction in MG are discussed.

Nucleoplasmic Ca(2+)loading is regulated by mobilization of perinuclear Ca(2+).

Regulation of nucleoplasmic calcium (Ca(2+)) concentration may occur by the mobilization of perinuclear luminal Ca(2+)pools involving specific Ca(2+)pumps and channels of both inner and outer perinuclear membranes. To determine the role of perinuclear luminal Ca(2+), we examined freshly cultured 10 day-old embryonic chick ventricular cardiomyocytes. We obtained evidence suggesting the existence of the molecular machinery required for the bi-directional Ca(2+)fluxes using confocal imaging techniques. Embryonic cardiomyocytes were probed with antibodies specific for ryanodine-sensitive Ca(2+)channels (RyR2), sarco/endoplasmic reticulum Ca(2+)ATPase (SERCA2)-pumps, and fluorescent BODIPY derivatives of ryanodine and thapsigargin. Using immunocytochemistry techniques, confocal imaging showed the presence of RyR2 Ca(2+)channels and SERCA2-pumps highly localized to regions surrounding the nucleus, referable to the nuclear envelope. Results obtained from Fluo-3, AM loaded ionomycin-perforated embryonic cardiomyocytes demonstrated that gradual increases of extranuclear Ca(2+)from 100 to 1600 nM Ca(2+)was localized to the nucleus. SERCA2-pump inhibitors thapsigargin and cyclopiazonic acid showed a concentration-dependent inhibition of nuclear Ca(2+)loading. Furthermore, ryanodine demonstrated a biphasic concentration-dependence upon active nuclear Ca(2+)loading. The concomitant addition of thapsigargin or cyclopiazonic acid with ryanodine at inhibitory concentrations caused an significant increase in nuclear Ca(2+)loading at low concentrations of extranuclear added Ca(2+). Our results show that the perinuclear lumen in embryonic chick ventricular cardiomyocytes is capable of autonomously regulating nucleoplasmic Ca(2+)fluxes.

Fatigue and its impact on patients with myasthenia gravis.

We have examined fatigue in myasthenia gravis (MG) by administering a measure of cognitive and physical fatigue to patients and control subjects before and after administration of a lengthy cognitive battery. Subjects also completed a scale that assessed the impact of fatigue on physical, social, and cognitive function. Results of the study revealed that MG patients experience significantly more cognitive and physical fatigue than do control subjects, and the patients' perceptions of both cognitive and physical fatigue increased significantly following completion of demanding cognitive work. Control subjects reported no significant change in fatigue. Furthermore, MG patients reported that fatigue produced mild to moderate effects on cognitive and social function and moderate effects on physical function. Results from this study indicate that cognitive fatigue is an important symptom of MG and that fatigue produces pervasive impairments in important aspects of patients' lives. Additional studies are needed to understand the neurobehavioral determinants of cognitive fatigue in this population.

Chemotherapy in neuroendocrine/Merkel cell carcinoma of the skin: case series and review of 204 cases.

PURPOSE: To study the use of chemotherapy for Merkel cell carcinoma (MCC) of the skin. PATIENTS AND METHODS: Twenty-five cases of MCC were treated at the London Regional Cancer Center between 1987 and 1997. Thirteen cases treated with chemotherapy were reviewed with 191 cases from the literature. RESULTS: At presentation, 24 patients had localized skin lesions (stage I) and one had locoregional involvement (stage II). Among the nine cases with recurrent nodal disease, six had chemotherapy as a component of salvage treatment. They were all free of disease at a median of 19 months (range, 12 to 37 months). In contrast, two patients who had salvage radiotherapy alone died of disease. Overall survival (OS) and disease-free survival (DFS) were 59% and 43%, respectively, at two years. Median OS and DFS were 29 months (range, 1 to 133 months) and 9 months (range, 1 to 133 months), respectively. Nodal disease developed in 12 (50%) of 24 patients with stage I disease, and distant metastases developed in six (25%) of 24. Including those from the literature, there were 204 cases treated with chemotherapy. Cyclophosphamide/doxorubicin (or epirubicin)/vincristine combination +/- prednisone was the most commonly used chemotherapy regimen (47 cases), with an overall response rate of 75.7% (35.1% complete, 35. 1% partial, and 5.4% minor responses). Etoposide/cisplatin (or carboplatin) was the next most commonly used regimen (27 cases), with an overall response rate of 60% (36% complete and 24% partial responses). The difference in response rate was not statistically significant (P =.19). Among the 204 cases, there were seven (3.4%) toxic deaths. CONCLUSION: Chemoradiation for locally recurrent or advanced disease may be an option for patients with a good performance status.

Injury prevention practices as depicted in G-rated and PG-rated movies.

BACKGROUND: Previous studies on alcohol, tobacco, and violence suggest that children's behavior can be influenced by mass media; however, little is known about the effect of media on unintentional injuries, the leading cause of death among young persons in the United States. OBJECTIVE: To determine how injury prevention practices are depicted in G-rated (general audience) and PG-rated (parental guidance recommended) movies. DESIGN: Observational study. SETTING: The 25 movies with the highest domestic box-office grosses and a rating of G or PG for each year from 1995 through 1997. Movies that were predominantly animated or not set in the present day were excluded from analysis. SUBJECTS: Movie characters with speaking roles. MAIN OUTCOME MEASURES: Safety belt use by motor vehicle occupants, use of a crosswalk and looking both ways by pedestrians crossing a street, helmet use by bicyclists, personal flotation device use by boaters, and selected other injury prevention practices. RESULTS: Fifty nonanimated movies set in the present day were included in the study. A total of 753 person-scenes involving riding in a motor vehicle, crossing the street, bicycling, and boating were shown (median, 13.5 person-scenes per movie). Forty-two person-scenes (6%) involved falls or crashes, which resulted in 4 injuries and 2 deaths. Overall, 119 (27%) of 447 motor vehicle occupants wore safety belts, 20 (18%) of 109 pedestrians looked both ways before crossing the street and 25 (16%) of 160 used a crosswalk, 4 (6%) of 64 bicyclists wore helmets, and 14 (17%) of 82 boaters wore personal flotation devices. CONCLUSIONS: In scenes depicting everyday life in popular movies likely to be seen by children, characters were infrequently portrayed practicing recommended safe behaviors. The consequences of unsafe behaviors were rarely shown. The entertainment industry should improve its depiction of injury prevention practices in G-rated and PG-rated movies.

Exercise-related injuries among women: strategies for prevention from civilian and military studies.

SCOPE OF THE PROBLEM: The numerous health benefits of physical activity have been well documented, resulting in public health support of regular physical activity and exercise. Although beneficial, exercise also has corresponding risks, including musculoskeletal injuries. The incidence and risk factors for exercise-related injury have been poorly assessed in women. Many civilian exercise activities (e.g., jogging, walking, and erobics) have corollaries in military physical training; injury incidence and risk factors associated with military physical training have been more thoroughly studied. ETIOLOGIC FACTORS: Injury risks increase as the amount of training increases (increased xposure). The same exercise parameters that can be modified to enhance physical fitness (i.e., frequency, duration, and intensity) also influence the risk for injury in a dose-response manner. Higher levels of current physical fitness (aerobic fitness) protect the participant against future injury. A history of previous injury is a risk factor for future injury. Smoking cigarettes has been associated with increased risk for exercise-related injury. Studies conducted in military populations suggest that the most important risk factor for injuries among persons engaged in vigorous weight-bearing aerobic physical activity might be low aerobic fitness rather than female sex. RECOMMENDATIONS FOR PREVENTION: Because of the limited scientific research regarding women engaging in exercise, general recommendations are provided. Women starting exercise programs should be realistic about their goals and start slowly at frequency, duration, and intensity levels commensurate with their current physical fitness condition. Women should be informed about the early indicators of potential injury. Women who have sustained an injury should take precautions to prevent reinjury (e.g., ensuring appropriate recovery and rehabilitation). RESEARCH AGENDA: In general, a combination of factors affects the risk for exercise-related injury in women. How these factors act singly and in combination to influence injury risk is not well understood. Additional research regarding exercise-related injury in women is needed to answer many of the remaining epidemiologic questions and to help develop exercise programs that improve health while reducing the risk for injury. CONCLUSION: Exercise is an important component in improving and maintaining health; however, injury is also an accompanying risk. A review of key military and civilian research studies regarding exercise-related injuries provides some clues to reducing these injuries in women. Greater adherence to exercise guidelines can help decrease these risks.

Merkel cell carcinoma of the skin.

BACKGROUND: Neuroendocrine/Merkel cell carcinoma (MCC) of the skin is an uncommon tumour. Currently, there are only limited data available on the natural history, prognostic factors, and patient management of MCC. OBJECTIVES: To review our experience and build the largest database from the literature. METHODS: Twenty-eight cases from the London Regional Cancer Center were combined with 633 cases obtained from the literature searched in English, French, German, and Chinese for the years 1966 to 1998. The database included age, sex, initial disease status at presentation to the clinic, site of primary, any coexisting disease, any previous irradiation, sizes of primary/nodal/distant metastases, management details, and final disease status. A new modified staging system was used: stage Ia (primary disease only, size > 2 cm), stage Ib (primary disease only, size > 2 cm); stage II (regional nodal disease), and stage III (beyond regional nodes and/or distant disease). RESULTS: Age > 65 years, male sex, size of primary > 2 cm, truncal site, nodal/distant disease at presentation, and duration of disease before presentation (< or =3 months) were poor prognostic factors. Surgery was the initial treatment of choice and it significantly improved overall survival (p =.004). CONCLUSIONS: We identified poor prognostic factors that may necessitate more aggressive treatment. The suggested staging system, incorporating primary tumour size, accurately predicted outcomes.