The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol.

BACKGROUND: Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. METHODS/DESIGN: We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients' experience of emotional support throughout their care trajectory. DISCUSSION: This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

Survey of primary care physicians' views about breast and ovarian cancer screening for true BRCA1/2 non-carriers.

Despite some controversy, true BRCA1/2 non-carriers are generally considered to be at an average risk for breast and ovarian cancer. Primary care physicians are then expected to encourage their non-carrier patients to adopt cancer screening practices appropriate to women of the same age in the general population. This study aimed to describe breast and ovarian cancer screening recommendations that primary care physicians would consider advisable for young true BRCA1/2 non-carriers. One hundred thirty-four family physicians and 123 gynecologists (response rate 45%) completed a cross-sectional mailed survey administered in the Province of Quebec, Canada. The survey included questions about basic genetic knowledge and screening recommendations for two fictitious cases (< 40 years), one carrier and one non-carrier, from a BRCA1/2 mutation-positive family. Screening exams considered advisable did not differ significantly between family physicians and gynecologists. More than 75% of physicians considered the cancer risks of true non-carriers to be comparable with that of the general population and 14% to be a little higher. Still, 53% would prescribe a biennial and or even an annual (27%) mammography to a non-carrier woman before the recommended starting age. Physician considerations of non-carriers' expectations or requests for screening were associated with more screening prescriptions. More than half of primary care physicians would recommend more mammography screenings than expected for a young true BRCA1/2 non-carrier. Personalized cancer risk assessment may help primary care physicians tailor screening of women from BRCA1/2 mutation-positive families and allow these women to make more informed choices regarding cancer risk management options.

What characterizes cancer family history collection tools? A critical literature review.

Background: Many tools have been developed for the standardized collection of cancer family history (fh). However, it remains unclear which tools have the potential to help health professionals overcome traditional barriers to collecting such histories. In this review, we describe the characteristics, validation process, and performance of existing tools and appraise the extent to which those tools can support health professionals in identifying and managing at-risk individuals. Methods: Studies were identified through searches of the medline, embase, and Cochrane central databases from October 2015 to September 2016. Articles were included if they described a cancer fh collection tool, its use, and its validation process. Results: Based on seventy-nine articles published between February 1978 and September 2016, 62 tools were identified. Most of the tools were paper-based and designed to be self-administered by lay individuals. One quarter of the tools could automatically produce pedigrees, provide cancer-risk assessment, and deliver evidence-based recommendations. One third of the tools were validated against a standard reference for collected fh quality and cancer-risk assessment. Only 3 tools were integrated into an electronic health records system. Conclusions: In the present review, we found no tool with characteristics that might make it an efficient clinical support for health care providers in cancer-risk identification and management. Adequately validated tools that are connected to electronic health records are needed to encourage the systematic identification of individuals at increased risk of cancer.

No evidence of excessive cancer screening in female noncarriers from BRCA1/2 mutation-positive families.

BACKGROUND: In families with a proven BRCA1/2 mutation, women not carrying the familial mutation should follow the cancer screening recommendations applying to women in the general population. In the present study, we evaluated the cancer screening practices of unaffected noncarriers from families with a proven BRCA mutation, and we assessed the role of family history in their screening practices. METHODS: Self-report data were provided retrospectively by 220 unaffected female noncarriers for periods of up to 10 years (mean: 4.3 years) since disclosure of their BRCA1/2 genetic test result. A ratio for the annual frequency of breast and ovarian cancer screening exams (mammography, breast ultrasonography, breast magnetic resonance imaging, transvaginal or pelvic ultrasound, cancer antigen 125 testing) was calculated as number of screening exams divided by the number of years in the individual observation period. RESULTS: The annual average for mammography exams was 0.15, 0.4, 0.56, and 0.71 in women 30-39, 40-49, 50-59, and 60-69 years of age respectively. The uptake of other breast and ovarian cancer screening exams was very low. Mammography and breast ultrasonography and magnetic resonance imaging were generally more frequent among participants with at least 1 first-degree relative affected by breast cancer. CONCLUSIONS: In most noncarriers, screening practices are consistent with the guidelines concerning women in the general population. When noncarriers adopt screening behaviours that are different from those that would be expected for average-risk women, those behaviours are influenced by their familial cancer history. IMPACT: Decision tools might help female noncarriers to be involved in their follow-up in accordance with their genetic status and their family history, while taking into account the benefits and disadvantages of cancer screening.

Canine cutaneous leishmaniasis by Leishmania (Viannia) braziliensis in an agricultural settlement, endemic area for leishmaniasis / Leishmaniose tegumentar canina por Leishmania (Viannia) braziliensis em um assentamento agrícola, área endêmica para leishmanioses

Cutaneous leishmaniasis has several species of Leishmania as agents, and a wide variety of wild and domestic animals as hosts and different species of phlebotomines as vectors. A case of cutaneous leishmaniasis in a dog coming from an agricultural settlement is described. This is the first report of parasitism in a dog by Le. (Viannia) braziliensis in Mato Grosso do Sul State. Attention is called to the importance of including this protozoonosis in the differential diagnosis of dermopathies in dogs as also the need to assess the importance of the domestic dog as a possible reservoir of Le. braziliensis.(AU)

As leishmanioses tegumentares são antropozoonoses metaxênicas de importância em saúde pública. Possuem como agentes etiológicos várias espécies de Leishmania, com ampla variedade de hospedeiros, como animais selvagens e domésticos, e diferentes espécies de flebotomíneos como vetores. Um caso de leishmaniose tegumentar em um cão procedente de um assentamento agrícola em Mato Grosso do Sul é descrito, sendo este o primeiro relato de parasitismo em cão doméstico nesse estado por Le. (Viannia) braziliensis. Alerta-se para a importância de se incluir essa protozoonose no diagnóstico diferencial de dermopatias em cães e para a necessidade de se avaliar o papel do cão doméstico como reservatório de Le. (Vi.) braziliensis.(AU)

Treatment of visceral leishmaniasis in children in the Central-West Region of Brazil.

BACKGROUND: Detailed reports on the treatment of visceral leishmaniasis (VL) are scarce, particularly with regard to the utilization of antimoniate of N-methylglucamine. The aim of this study was to analyze the treatment of children admitted to a reference hospital, focusing in particular on the use of antimoniate of N-methylglucamine and on the supportive measures adopted. MATERIALS AND METHODS: Medical records of children treated for VL from January 1998 to February 2005 in the Hospital of the University of Mato Grosso do Sul, Central-West Region of Brazil, were reviewed retrospectively. RESULTS: A total of 116 children were treated, and 111 received antimoniate as the first therapeutic choice. The drug was highly efficient (96.9%) in patients with no signs of gravity on admission, in cases presenting warning signs of potential evolution to gravity, and even in some severely ill children. The most common adverse effects were increases in transaminase (22.5%) and amylase (17.5%) levels, and generally reversible electrocardiogram changes (18%). Some problems were detected during the treatment, such as inadequate prescription (causing an under- or overdose) or inappropriate change to a second-line scheme. Of the 116 children, 80% were given antibiotics, 71.5% needed a transfusion of red blood cells, 10.3% required a transfusion of platelets, fresh frozen plasma was given to 4.3%, albumin was administered in 3.4, and 8.6% needed intensive care support. The mortality rate was about 2.6%. CONCLUSION: Antimoniate of N-methylglucamine remains highly efficient and well tolerated in pediatric patients, which allows its utilization as a first-line therapy in Brazilian children until a better drug for widespread use becomes available; however, it should be used with caution, and special attention is required during its prescription and for the management of adverse effects. The low mortality rate obtained confirms that, in addition, successful treatment demands the correction of serious anemia and thrombocytopenia, the vigorous use of antibiotics to fight intercurrent bacterial infections, and sometimes the availability of intensive care units to treat more severe patients.

Species-specific identification of Leishmania in naturally infected sand flies captured in Mato Grosso do Sul State, Brazil.

An increase in cutaneous and visceral leishmaniasis cases has been reported in recent years in the state of Mato Grosso do Sul, Brazil, and little is known to date about their etiological agents. An investigation into natural Leishmania infection of sand flies captured in this state between December 2003 and August 2004 was carried out. Mini-exon sequences were used as targets to identify Leishmania, and an RFLP technique was employed for those identified as belonging to the Viannia subgenus. Calculation of the minimal infection rate (MR) revealed that 1.6% of sand flies captured in the forest, peridomicile and intradomicile were positive. Six species were found to be infected by Leishmania (V.) braziliensis. Interestingly, two of the six species, Lutzomyia longipalpis and Nyssomyia whitmani, were captured in anthropic environments. The findings of this study constitute a useful tool for planning control measures against this disease in the State of Mato Grosso do Sul.

Leishmania (Leishmania) infantum/chagasi: Histopathological aspects of the skin in naturally infected dogs in two endemic areas.

In the New World, visceral leishmaniasis (VL), which is a progressive disease and frequently fatal, is caused by Leishmania (Leishmania) infantum/chagasi. It is endemic in many regions of Brazil and occasionally occurs in non-endemic regions when dogs from an endemic area are introduced. The aim of the present study is to compare different skin infection patterns of dogs from two leishmaniasis endemic areas. A histological analysis of dogs from Campo Grande, Mato Grosso do Sul state, a region where epidemic episodes are currently taking place, showed dermic inflammatory infiltrates, composed of numerous vacuolated parasitized macrophages, few lymphocytes, plasma cells and many degranulated mast cells. In the other region of the study, São Luís, Maranhão state, the skin of dogs presented a remarkable inflammatory reaction composed mainly of plasma cells, lymphocytes and very few parasites. We concluded that there is a difference in the skin lesion patterns of dogs with leishmaniasis that is directly related to the endemic area where the animals live.

Identifying mental health services in clinical genetic settings.

The purpose of this study was to examine the mental health needs of individuals at risk for adult onset hereditary disorder (AOHD) from the perspective of their genetic service providers, as it is unknown to what extent psychosocial services are required and being met. A mail-out survey was sent to 281 providers on the membership lists of the Canadian Association of Genetic Counsellors and the Canadian College of Medical Geneticists. The survey assessed psychosocial issues that were most commonly observed by geneticists, genetic counsellors (GCs), and nurses as well as availability and types of psychosocial services offered. Of the 129 respondents, half of genetic service providers reported observing signs of depression and anxiety, while 44% noted patients' concerns regarding relationships with family and friends. In terms of providing counselling to patients, as the level of psychological risk increased, confidence in dealing with these issues decreased. In addition, significantly more GCs reported that further training in psychosocial issues would be most beneficial to them if resources were available. As a feature of patient care, it is recommended that gene-based predictive testing include an integrative model of psychosocial services as well as training for genetic service providers in specific areas of AOHD mental health.

[Arnold-Chiari II malformation and basilar impression. Report of one case (a literature review)]. / Malformation d'Arnold Chiari de type II et impression basilaire.A propos d'un cas (revue de la littérature).

OBJECTIVE: To tell the rare association of Arnold-Chiari II malformation and basilar impression and to describe an exceptional clinical state with a particular surgical approach. MATERIALS AND METHODS: To analyse a case of a patient suffering from this congenital malformation, her progressive clinical state, the surgical approach. RESULTS: N.G. a 42-year-old woman, suffers from a cerebello-spino-medullar disturbance responsible for a major dependence and respiratory insufficiency with a risk of death. The results of the surgical treatment meant to decompress the craniovertebral junction are exceptional. DISCUSSION: The analysis of the literature show the special feature of this case as much for the rarity of the diagnosis as for the progressive clinical state and the remarkable post operative result. CONCLUSION: The association of these two malformations is seldom alluded to in the literature and such a post operative result has apparently never been described. In addition, this case tends to prove that a second operation's worth considering if the first has shown its short-fall whichever the patient's clinical state.

Attractiveness of black Shannon trap for phlebotomines.

A white Shannon-type trap was used for captures of female sand flies in the search for natural infection with flagellates, however, due to its low productivity and as a large number of phlebotomines settled on the researchers' black clothes, we decided to compare the relative attractiveness of black and white Shannon-type traps for sand flies. Several pairs of black and white traps were placed side by side in front of caves in four areas in the Serra da Bodoquena, Bonito county, State of Mato Grosso do Sul, Brazil, for a total of 12 observations and 44 h of capture. The experiment resulted in 889 phlebotomines captured, 801 on the black and 88 on the white trap, representing 13 species. The hourly Williams' means were 8.67 and 1.24, respectively, and the black/white ratio was 7.0:1.0. Lutzomyia almerioi, an anthropophilic species closely associated with caves, was predominant (89%). Only two other species, Nyssomyia whitmani and Psathyromyia punctigeniculata, also anthropophilic, were significantly attracted to the black rather than to the white trap (chi(2) test; p < or = 0.01). The difference between the diversity index of the two traps was not significant at level 0.05. The black trap in these circumstances was much more productive than the white, especially for anthropophilic species.

Educational interventions to improve cancer pain control: a systematic review.

CONTEXT: Inadequate pain control is a dismaying reality in cancer patients. OBJECTIVES: To review studies on cancer pain control interventions, and describe their findings with respect to participants' attitudes and knowledge, pain management, and pain levels. DATA SOURCES: Computer searches were made in MEDLINE from January 1962, in PsychLIT from January 1974, and in CINAHL from January 1982 to August 1999, using a search strategy based on a combination of key words. STUDY SELECTION: Computerized listings from these sources contained 383, 26, and 85 articles, respectively. After exclusion of duplicates, abstracts, editorials, letters, and irrelevant articles, we retained for review 33 articles, of which 25 (76%) were interventions targeting health professionals, and 8 (24%) interventions targeting patients and family caregivers. DATA EXTRACTION: Study reports were reviewed using the following structured framework: Intervention Setting, Study Methods, Process Assessment, and Pain Outcome Assessment (Attitudes and Knowledge, Pain Management, and Pain Relief/Quality of Life). DATA SYNTHESIS AND CONCLUSION: Educational interventions can successfully improve cancer pain knowledge and attitudes of health care professionals, but without having much impact on patients' pain levels. The most promising avenue for improving cancer pain control in ambulatory settings may be brief, nursing interventions targeting patients in combination with a daily pain diary. This review suggests that further progress may occur through incorporating a systematic and valid method of documenting daily fluctuation in pain levels, and ensuring that documented uncontrolled pain is followed rapidly by clinical reassessment and dose adjustment.

Attractiveness of black Shannon trap for phlebotomines

A white Shannon-type trap was used for captures of female sand flies in the search for natural infection with flagellates, however, due to its low productivity and as a large number of phlebotomines settled on the researchers' black clothes, we decided to compare the relative attractiveness of black and white Shannon-type traps for sand flies. Several pairs of black and white traps were placed side by side in front of caves in four areas in the Serra da Bodoquena, Bonito county, State of Mato Grosso do Sul, Brazil, for a total of 12 observations and 44 h of capture. The experiment resulted in 889 phlebotomines captured, 801 on the black and 88 on the white trap, representing 13 species. The hourly Williams' means were 8.67 and 1.24, respectively, and the black/white ratio was 7.0:1.0. Lutzomyia almerioi, an anthropophilic species closely associated with caves, was predominant (89 percent). Only two other species, Nyssomyia whitmani and Psathyromyia punctigeniculata, also anthropophilic, were significantly attracted to the black rather than to the white trap (chi2 test; p <= 0.01). The difference between the diversity index of the two traps was not significant at level 0.05. The black trap in these circumstances was much more productive than the white, especially for anthropophilic species

[Prevalence of Cryptosporidium parvum among children of less than 5 years of age in the urban zone of Campo Grande, Mato Grosso do Sul State, Brazil, 1996]. / Prevalência do Cryptosporidium parvum em crianças abaixo de 5 anos, residentes na zona urbana de Campo Grande, MS, Brasil, 1996.

The purpose of this study was to establish the prevalence of Cryptosporidium parvum among infants of less than 5 years of age, resident in the urban area of Campo Grande, Mato Grosso do Sul State, Brazil, 1996/97, through parasitological examinations and epidemiological analysis of the diagnosed cases. It was a transverse study with domiciliary inquiry and we evaluated 1051 fecal samples processed by the Blagg method, and a modified Ziehl-Neelsen staining was used for research of oocysts of C. parvum. We can concluded that the prevalence of C. parvum (1.1%) was not statistically significant; 58.3% of the children with positive diagnosis presented diarrhea, suggesting an association between this sign and the presence of the parasites; C. parvum was more frequent among children aged between 25 to 36 months (50%), but this was not statistically significant; sex did not have a differential role in relation to the cryptosporidiosis; out of the 12 children with cryptosporidiosis, 10 had contact with domestic animals (dogs and or cats).

A brief pain diary for ambulatory patients with advanced cancer: acceptability and validity.

BACKGROUND: Undertreatment of pain is common among ambulatory patients with advanced cancer. Available pain assessment tools are complex and not easy to use in ambulatory care settings. METHODS: The authors developed and assessed the acceptability and psychometric properties of a simple, brief 4-week pain diary for ambulatory care assessing 3 indicators: current pain intensity on rising and retiring, number of daily rescue doses, and weekly impact of pain on quality of life. Selected European Organization for Research and Treatment (EORTC) Quality of Life Questionnaire subscales were administered once concurrently for validation purposes. Subjects were 98 adult French-speaking ambulatory patients with advanced cancers who were on opioids, free of apparent cognitive impairment, and recruited through 2 oncology clinics in Quebec City, Quebec, Canada. RESULTS: In the first 3 weeks, > or =80% of patients completed all requested diary data. Internal consistencies of the 5-item scale assessing pain impact on quality of life were 0.87-0.92 over the study period. Pain intensity predicted both increased use of rescue doses and negative pain impact on quality of life. This latter scale was also responsive to decreases in pain intensity over 1-week intervals. As hypothesized, pain intensity, rescue doses, and pain impact on quality of life correlated with EORTC scale scores. Pain intensity correlated most strongly with the EORTC pain and global quality of life scales (r = 0.65 and -0.55, respectively). CONCLUSIONS: This diary is simple, very brief, acceptable to patients, and appears to be valid. It can thus likely be used to monitor pain management for advanced cancer patients.

Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: findings from p53 and BRCA1 testing programs.

PURPOSE: We examined the ability of individuals undergoing genetic testing for cancer susceptibility in two structured research protocols to accurately anticipate emotional reactions to disclosure of their test result. We explored whether accuracy of emotional anticipation was associated with postdisclosure psychologic adjustment. METHODS: Data from 65 individuals were analyzed; 24 members of Li-Fraumeni cancer syndrome families were tested for p53 mutations (all 24 were unaffected), and 41 subjects with hereditary breast-ovarian cancer susceptibility were tested for BRCA1 mutations (34 were unaffected and seven were affected). Subjects were from families in which a germline mutation had been previously identified. At the pretest session, subjects rated the extent to which they anticipated feeling each of six emotional states (relief, happiness, sadness, guilt, anger, and worry) after disclosure that they did or did not carry the familial mutation. After receiving their test result, they rated their feelings on the same scale of emotions for the appropriate condition. Extent of accuracy and association with psychologic distress at 6 months, as assessed with standardized measures, were evaluated. RESULTS: Overall, mean levels of emotional reactions after receiving test results were not different from those anticipated before result disclosure. However, affected BRCA1 carriers experienced higher levels of anger and worry than they had anticipated. Underestimation of subsequent distress emotions related to test result was associated with a significant increase in general psychologic distress at 6 months. CONCLUSION: Unaffected individuals in cancer-predisposition testing programs are generally accurate in anticipating emotional reactions to test results. However, cancer patients may underestimate their distress after disclosure of positive results and could benefit from intervention strategies.