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1.
Crit Rev Oncol Hematol ; : 104364, 2024 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-38729319

RESUMEN

Inter-professional collaboration could improve timely access and quality of oncogenetic services. Here, we present the results of a scoping review conducted to systematically identify collaborative models available, unpack the nature and extent of collaboration proposed, synthesize evidence on their implementation and evaluation, and identify areas where additional research is needed. A comprehensive search was conducted in four journal indexing databases on June 13th, 2022, and complemented with searches of the grey literature and citations. Screening was conducted by two independent reviewers. Eligible documents included those describing either the theory of change, planning, implementation and/or evaluation of collaborative oncogenetic models. 165 publications were identified, describing 136 unique interventions/studies on oncogenetic models with somewhat overlapping collaborative features. Collaboration appears to be mostly inter-professional in nature, often taking place during risk assessment and pre-testing genetic counseling. Yet, most publications provide very limited information on their collaborative features, and only a few studies have set out to formally evaluate them. Better quality research is needed to comprehensively examine and make conclusions regarding the value of collaboration in this oncogenetics. We propose a definition, logic model, and typology of collaborative oncogenetic models to strengthen future planning, implementation, and evaluation in this field.

2.
BMC Health Serv Res ; 24(1): 150, 2024 Jan 30.
Artículo en Inglés | MEDLINE | ID: mdl-38291443

RESUMEN

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.


Asunto(s)
Personal de Salud , Neoplasias , Humanos , Grupos Focales , Investigación Cualitativa , Oncología Médica , Neoplasias/terapia
3.
Cytometry A ; 103(7): 548-550, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37199047

RESUMEN

Airway inflammation is a defense mechanism against inhaled agents characterized by infiltration of circulating immune cells. Given the inconsistent cellular identification across pre-clinical rat model, we have developed a flow cytometry panel of six colors to characterize macrophages subsets, lymphocytes and granulocytes in bronchoalveolar lavage fluid (BAL). Rats were challenged with intratracheal instillation of lipopolysaccharide (LPS). BAL were harvested 24 h after one LPS exposure in rats. This flow cytometry panel involve the description of macrophage subsets, T and B lymphocytes and neutrophils, which are central to airway immune responses, as based on scientific literature. By using a relatively small number of parameters to identify multiple cell types, additional parameters can be used for project/disease-specific activation markers.


Asunto(s)
Lipopolisacáridos , Pulmón , Ratas , Animales , Líquido del Lavado Bronquioalveolar , Lipopolisacáridos/farmacología , Macrófagos , Granulocitos , Linfocitos , Neutrófilos/fisiología
4.
BMC Cancer ; 23(1): 369, 2023 Apr 22.
Artículo en Inglés | MEDLINE | ID: mdl-37087438

RESUMEN

BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.


Asunto(s)
Neoplasias de la Mama , Distrés Psicológico , Humanos , Femenino , Estudios Transversales , Estrés Psicológico/psicología , Autoeficacia , Adaptación Psicológica , Neoplasias de la Mama/terapia , Neoplasias de la Mama/psicología , Encuestas y Cuestionarios
5.
J Leukoc Biol ; 114(1): 84-91, 2023 07 01.
Artículo en Inglés | MEDLINE | ID: mdl-37032534

RESUMEN

Allergic asthma is a chronic inflammatory disease characterized by Th2, conventional dendritic cell, and B-cell activation. In addition to excessive inflammation, asthma pathogenesis includes dysregulation of anti-inflammatory pathways, such as the CD200/CD200R pathway. Thus, we investigated whether a CD200R agonist, CD200Fc, could disrupt the inflammatory cascade in chronic allergic asthma pathogenesis using a mice model of experimental asthma. Mice were exposed to house dust mites for 5 wk, and CD200Fc treatment was initiated after chronic inflammation was established (starting on week 4). We demonstrate that chronic house dust mite exposure altered CD200 and CD200R expression on lung immune cell populations, including upregulation of CD200 on alveolar macrophages and reduced expression of CD200 on conventional dendritic cells. CD200Fc treatment does not change bronchoalveolar cellular infiltration, but it attenuates B-cell activation and skews the circulating immunoglobulin profile toward IgG2a. This is accompanied by reduced activation of conventional dendritic cells, including lower expression of CD40, especially on conventional dendritic cell subset 2 CD200R+. Furthermore, we confirm that CD200Fc can directly modulate conventional dendritic cell activation in vitro using bone marrow-derived dendritic cells. Thus, the CD200/CD200R pathway is dysregulated during chronic asthma pathogenesis, and the CD200R agonist modulates B-cell and dendritic cell activation but, in our chronic model, is not sufficient to alter inflammation measured in bronchoalveolar lavage.


Asunto(s)
Asma , Pyroglyphidae , Ratones , Animales , Inflamación , Alérgenos , Células Dendríticas
6.
Health Expect ; 26(2): 847-857, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36704843

RESUMEN

INTRODUCTION: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. METHODS: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. RESULTS: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. CONCLUSION: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.


Asunto(s)
Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/psicología , Oncología Médica , Investigación Cualitativa , Grupos Focales , Pacientes
7.
BMJ Open ; 12(12): e066802, 2022 12 13.
Artículo en Inglés | MEDLINE | ID: mdl-36523215

RESUMEN

INTRODUCTION: In a context of limited genetic specialists, collaborative models have been proposed to ensure timely access to high quality oncogenetic services for individuals with inherited cancer susceptibility. Yet, extensive variability in the terminology used and lack of a clear understanding of how interprofessional collaboration is operationalised and evaluated currently constrains the development of a robust evidence base on the value of different approaches used to optimise access to these services. To fill in this knowledge gap, this scoping review aims to systematically unpack the nature and extent of collaboration proposed by these interventions, and synthesise the evidence available on their implementation, effectiveness and economic impact. METHODS AND ANALYSIS: Following the Joanna Briggs Institute guidelines for scoping reviews, a comprehensive literature search will be conducted to identify peer-reviewed and grey literature on collaborative models used for adult patients with, or at increased risk of, hereditary breast, ovarian, colorectal and prostate cancers. An initial search was developed for Medline, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Cochrane and Web of Science on 13 June 2022 and will be complemented by searches in Google and relevant websites. Documents describing either the theory of change, planning, implementation and/or evaluation of these interventions will be considered for inclusion. Results will be summarised descriptively and used to compare relevant model characteristics and synthesise evidence available on their implementation, effectiveness and economic impact. This process is expected to guide the development of a definition and typology of collaborative models in oncogenetics that could help strengthen the knowledge base on these interventions. Moreover, because we will be mapping the existing evidence on collaborative models in oncogenetics, the proposed review will help us identify areas where additional research might be needed. ETHICS AND DISSEMINATION: This research does not require ethics approval. Results from this review will be disseminated through peer-reviewed articles and conferences.


Asunto(s)
Neoplasias , Proyectos de Investigación , Masculino , Humanos , Revisión por Pares , Especialización , Neoplasias/genética , Neoplasias/terapia , Literatura de Revisión como Asunto
8.
Can Oncol Nurs J ; 32(2): 272-285, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35582250

RESUMEN

Documenting a patient's family history of cancer is useful in assessing their predisposition to some types of hereditary cancers. A group of nurses working with cancer patients were surveyed, by way of a questionnaire, to determine their level of knowledge about oncogenetics, describe various issues related to their capacity to identify, refer and support individuals with a hereditary risk of cancer, and explore their interest in continuing education on this topic. The findings show limited knowledge and a low sense of competence among the participating nurses, as well as a lack of access to university and continuing education programs in this field. Training focused on competency development would enhance their capacity to carry out an initial assessment of individuals who are potentially at risk for cancer and refer them to specialized resources.

10.
Front Immunol ; 13: 1092126, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36591265

RESUMEN

Introduction: At lung mucosal surfaces, immune cells must initiate inflammatory response against pathogen without inducing tissue damage. Loss of this equilibrium can lead to acute respiratory distress syndrome (ARDS), a severe lung inflammatory disease characterized by excessive inflammation and dysregulation of anti-inflammatory pathways. Methods: To investigate the role of anti-inflammatory pathway CD200/CD200R in lung inflammatory response, we administered LPS intratracheally in CD200 KO and wild type (WT) rats. Inflammation was evaluated using bronchoalveolar lavage (BAL) cellularity. Lung injury was measured by total protein level in BAL fluid, and levels of proinflammatory cytokines (TNF, IL-6) and chemokines (CXCL2, CCL2) were determined in BAL supernatants. In a second series of experiments, recombinant CD200Fc was administered to KO rats to restore the anti-inflammatory response. Results: At baseline, CD200 KO rats did not show sign of inflammation, however KO rats had lower number of alveolar macrophages. In addition, LPS administration induced greater pulmonary edema in CD200 KO rats. This was accompanied with a higher recruitment of neutrophils as well as levels of TNF, IL-6, CXCL2, and CCL2 in BAL compared to WT rats. CD200Fc administration in KO rats reduced neutrophil accumulation and TNF and CXCL2 levels in BAL. Interestingly, the increased inflammatory response of CD200 KO rats could be attributed to greater activation potential of alveolar macrophages with higher levels of ERK and P-ERK MAPK. Conclusion: This study shows that lung inflammatory response is exacerbated in absence of CD200 in an experimental model of ARDS in rats. In addition, CD200/CD200R pathway shows selective regulation of acute lung inflammation and cannot completely abrogate the complex LPS-induced inflammatory response. However, addition of CD200 agonist in a multi-target therapy strategy could have beneficial impacts.


Asunto(s)
Neumonía , Animales , Ratas , Inflamación/inducido químicamente , Inflamación/genética , Inflamación/inmunología , Interleucina-6 , Lipopolisacáridos/efectos adversos , Lipopolisacáridos/farmacología , Neumonía/inducido químicamente , Neumonía/genética , Neumonía/inmunología , Síndrome de Dificultad Respiratoria/etiología
11.
Healthcare (Basel) ; 9(9)2021 Sep 02.
Artículo en Inglés | MEDLINE | ID: mdl-34574919

RESUMEN

(1) Background: The Genetic Counseling Satisfaction Scale (GCSS) is a widely used tool to evaluate patient satisfaction. To our knowledge, a validated French-language version of this tool is not yet available. This article reports on the cross-cultural adaptation and validation of a French version of the Genetic Counseling Satisfaction Scale (GCSS) to evaluate genetic counseling services for patient consultation in hereditary breast and ovarian cancer (HBOC). (2) Methods: The scale was culturally adapted following guidelines from Beaton et al. (2000). Cognitive interviews were conducted to ensure items were understood according to the intended meaning. The internal consistency, floor and ceiling effects, and testing of group differences were assessed using a sample of 172 patients who attended a pretest group genetic counseling session. (3) Results: Participants understood all items according to the intended meaning. The internal consistency was high for the total scale (0.90) and for the corrected item-to-total correlations (varying between 0.62 and 0.78). No floor or ceiling effects were observed. Group difference analyses generally followed expectations. (4) Conclusion: This process generated a French version of the GCSS that is clearly understood by patients, and has psychometric properties adequately in line those reported for its original English version.

12.
Cancers (Basel) ; 13(11)2021 May 31.
Artículo en Inglés | MEDLINE | ID: mdl-34072979

RESUMEN

Medical genetic services are facing an unprecedented demand for counseling and testing for hereditary breast and ovarian cancer (HBOC) in a context of limited resources. To help resolve this issue, a collaborative oncogenetic model was recently developed and implemented at the CHU de Québec-Université Laval; Quebec; Canada. Here, we present the protocol of the C-MOnGene (Collaborative Model in OncoGenetics) study, funded to examine the context in which the model was implemented and document the lessons that can be learned to optimize the delivery of oncogenetic services. Within three years of implementation, the model allowed researchers to double the annual number of patients seen in genetic counseling. The average number of days between genetic counseling and disclosure of test results significantly decreased. Group counseling sessions improved participants' understanding of breast cancer risk and increased knowledge of breast cancer and genetics and a large majority of them reported to be overwhelmingly satisfied with the process. These quality and performance indicators suggest this oncogenetic model offers a flexible, patient-centered and efficient genetic counseling and testing for HBOC. By identifying the critical facilitating factors and barriers, our study will provide an evidence base for organizations interested in transitioning to an oncogenetic model integrated into oncology care; including teams that are not specialized but are trained in genetics.

13.
BMJ Open ; 8(2): e016662, 2018 02 27.
Artículo en Inglés | MEDLINE | ID: mdl-29487071

RESUMEN

OBJECTIVES: To identify common and specific individual factors that favour or impede women's interest in and willingness-to-pay (WTP) for breast cancer susceptibility testing (BCST) and to identify the most impactful factors on both outcome measures. DESIGN AND METHODS: This study used a self-administered cross-sectional Web-based questionnaire that included hypothetical scenarios about the availability of a new genetic test for breast cancer. PARTICIPANTS: French-speaking women of the general population of Québec (Canada), aged between 35 and 69 years, were identified from a Web-based panel (2410 met the selection criteria, 1160 were reached and 1031 completed the survey). MEASURES: The outcomes are the level of interest in and the range of WTP for BCST. Three categories of individual factors identified in the literature were used as potential explanatory factors, that is, demographic, clinical and psychosocial. RESULTS: Descriptive statistics indicated that the vast majority of sampled women are interested in BCST (90%). Among those, more than half of them are willing-to-pay for such a test (57%). The regression models pointed out several factors associated with both outcomes (eg, age, income, family history, locus of control-powerful others) and marginal effects were used to highlight the most impactful factors for each outcome. CONCLUSION: The results of this study provide a proxy of the readiness of women of the general population to use and to pay for BCST. They also offer insights for developing inclusive and specific strategies to foster informed decision-making and guide the services offered by health organisations corresponding to women's preferences and needs.


Asunto(s)
Neoplasias de la Mama/diagnóstico , Detección Precoz del Cáncer/economía , Financiación Personal , Renta/estadística & datos numéricos , Internet , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Persona de Mediana Edad , Quebec , Encuestas y Cuestionarios
14.
J Cancer Educ ; 33(3): 569-575, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-27804029

RESUMEN

Although most parents carrying a BRCA1/2 genetic mutation share their test result with their underage children, they report needing support to decide if, when, and how to share risk information and what reactions to expect from their children. We developed a tool to guide parents carrying a BRCA1/2 mutation share their genetic result with underage children. Here, we report on the development of this tool using a qualitative methodology. A tool prototype was developed based on the International Patient Decision Aids Standards Collaboration framework. Content was assessed using feedback from focus groups, individual interviews, and a 12-item reading grid. Participants were nine BRCA1/2 mutation carriers with underage children and three cancer genetics health professionals. Thematic content analysis was conducted on interview transcripts. The tool was developed using an iterative process until saturation of data. An independent advisory committee was involved in all steps of tool development until reaching consensus. Rather than a decision aid per se (to communicate or not), the parents wanted a more comprehensive tool to help them communicate genetic test result to their children. To meet parents' needs, a communication guidance booklet was developed, setting out the pros and cons of communication, steps to prepare sharing the test result, communication tips, and parents' testimonies. This communication tool responds to a significant unmet need faced by parents carrying a genetic predisposition to cancer. Future studies are needed to assess how the information from the parent's genetic test result impacts the child's development, health behaviors, and relationship with the parent.


Asunto(s)
Proteína BRCA1/genética , Proteína BRCA2/genética , Comunicación , Predisposición Genética a la Enfermedad , Mutación , Neoplasias/genética , Padres/psicología , Revelación de la Verdad , Adolescente , Toma de Decisiones , Técnicas de Apoyo para la Decisión , Femenino , Pruebas Genéticas/métodos , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Relaciones Padres-Hijo
15.
Per Med ; 11(1): 113-124, 2014 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-29751390

RESUMEN

This review describes the characteristics of available educational tools used for BRCA1/2 genetic testing. To identify the tools, we conducted a systematic search in electronic databases, and contacted over 1000 cancer genetics professionals. This review is based on 68 tools from the USA, Canada, Australia, the UK, France and Ireland. The tools vary in format and scope depending on the genetic testing phase for which they are intended. We found that a wide diversity of educational materials are available and used for BRCA1/2 genetic testing around the world. However, a substantial number of tools fail to address important aspects of genetic testing.

16.
Bull Cancer ; 100(3): 201-11, 2013 Mar.
Artículo en Francés | MEDLINE | ID: mdl-23501099

RESUMEN

UNLABELLED: Prophylactic mastectomy is an effective, although controversial strategy to reduce the risk of breast cancer in women carrying a BRCA1/2 mutation. A multidisciplinary pre- and post-operative clinical management is recommended for women who consider or undergo this surgery, because of its radical and irreversible nature as well as its possible impact on quality of life. OBJECTIVE: This study aims to report on the experience of patients having undergone prophylactic mastectomy within a medical setting offering such a clinical management. METHODS: A retrospective qualitative study was conducted with patients having had a prophylactic mastectomy between 2002 and 2006 at the centre des maladies du sein Deschênes-Fabia (CMSDF) in Quebec City. Fifteen women were interviewed and the narratives were analyzed using thematic content analysis method. RESULTS: The participants generally appreciated the multidisciplinary approach that was used at the CMSDF and believed it was necessary. Improvements were suggested regarding information and post-surgical medical follow-up, some of which are now implemented. CONCLUSION: The study results confirm the utility and the acceptability of a multidisciplinary clinical follow-up for women who undergo prophylactic mastectomy.


Asunto(s)
Neoplasias de la Mama/prevención & control , Mastectomía , Adulto , Neoplasias de la Mama/genética , Neoplasias de la Mama/psicología , Instituciones Oncológicas , Femenino , Genes BRCA1 , Genes BRCA2 , Humanos , Mastectomía/psicología , Persona de Mediana Edad , Mutación/genética , Grupo de Atención al Paciente , Educación del Paciente como Asunto/normas , Satisfacción del Paciente , Cuidados Posoperatorios/normas , Investigación Cualitativa , Mejoramiento de la Calidad/normas , Calidad de Vida , Quebec , Estudios Retrospectivos
17.
Eur J Hum Genet ; 21(9): 903-10, 2013 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-23340514

RESUMEN

While the importance of intrafamilial communication of hereditary cancer risk has been acknowledged, the factors that promote and act as barriers to patients disclosing their information to their families are complex and emerging. This raises the question: How are patients guided in practice to contemplate intrafamilial communication? Focusing on breast cancer, we conducted an exploratory study examining current resources supporting patients and health-care professionals, and isolated the messages surrounding intrafamilial communication of cancer risk. We find the duty for health-care professionals to counsel patients regarding intrafamilial communication is acknowledged to varying degrees by multiple actors in the cancer care delivery landscape, including health-care professional associations, health service organizations, and patient groups. A range of medical, psychosocial, and other factors underlying intrafamilial communication are acknowledged in messages to patients. Patients, however, are often referred to a single group of health-care professionals to discuss their diverse and complex needs. At the same time, messages aimed at patients appear to place the emphasis on barriers that could exist for patients contemplating intrafamilial communication, while highlighting the benefits families derive from such communication. Taken together, this points to a lack of coherence within materials directed to patients and suggests the need to do coordinated research among stakeholders to address two related issues: (1) determining who are the actors best positioned to send messages surrounding intrafamilial communication to patients and (2) addressing the content of messages conveyed in patient materials.


Asunto(s)
Neoplasias de la Mama/genética , Relaciones Familiares , Revelación de la Verdad , Neoplasias de la Mama/psicología , Salud de la Familia , Femenino , Asesoramiento Genético , Pruebas Genéticas , Humanos , Educación del Paciente como Asunto , Factores de Riesgo
18.
J Genet Couns ; 22(2): 249-57, 2013 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-22892900

RESUMEN

We assessed whether certain life events contributed to the communication about cancer risk within families who have undergone BRCA1/2 testing. We also explored what type of resources participants would have valued to help in supporting family communication about genetic information. Two hundred and forty-six individuals (218 women, 28 men) who received a BRCA1/2 genetic test result 3 to 10 years earlier (mean of 6.4 years) participated in a telephone interview. Participants were asked about the occurrence of a number of life events (cancer diagnosis, death, uptake of prophylactic surgery, and providing care to a family member with cancer) in their family since their BRCA1/2 test result disclosure and, for each occurrence, whether it fostered family communication about cancer risk. A total of 182 participants (74 %) reported that they or one of their relatives received a cancer diagnosis, 176 (72 %) reported that someone died in their family, and 73 (30 %) stated that they or one of their relatives undertook a prophylactic surgery. During this period, 109 participants (44 %) also provided care for a family member who had cancer. Among participants who reported these life events, family communication was fostered by these events in proportions varying from 50 % (death) to 69 % (cancer diagnosis). Our results indicate that life events may contribute to family communication about cancer risk. Further research is needed to determine whether these events provide a "window of opportunity" to reach family members, address their needs and concerns about cancer, update family cancer history, and introduce genetic counseling and risk assessment.


Asunto(s)
Familia , Genes BRCA1 , Genes BRCA2 , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Acontecimientos que Cambian la Vida , Adolescente , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
19.
Eur J Hum Genet ; 21(7): 719-24, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-23169493

RESUMEN

Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Québec City (2), Montréal (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1-numerical: cumulative risk probabilities by age until 80 years; 2-risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3-relative risk of breast cancer by age 80 years; 4 and 5-absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6-qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.


Asunto(s)
Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/genética , Asesoramiento Genético , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias de la Mama/patología , Canadá , Femenino , Grupos Focales , Humanos , Persona de Mediana Edad , Factores de Riesgo
20.
J Genet Couns ; 22(3): 323-35, 2013 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-23242930

RESUMEN

This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant's subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.


Asunto(s)
Familia , Genes BRCA1 , Genes BRCA2 , Pruebas Genéticas , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad
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