Sylvie Pelletier

Health‐related empowerment in cancer: Validity of scales from the Health Education Impact Questionnaire

Empowerment refers to an individuals feelings of being able to manage the challenges of the cancer experience and of having a sense of control over ones life. However, empowerment questionnaires that have been validated for the cancer setting are lacking. The objective of this study was to validate scales from the Health Education Impact Questionnaire (heiQ), which assesses the effects of health education programs among individuals with chronic conditions. The heiQ scales Social integration and support, Health service navigation, Constructive attitudes and approaches, Skill and technique acquisition, and Emotional distress were identified as key dimensions of empowerment for the cancer context.

Personality Organizations, Psychiatric Severity, and Self and Object Representations.

This study examined the hypothesis that psychotic, borderline, and neurotic personality organizations (POs) present a progressive differentiation between self and object representations and an increasing integration of their bad and good aspects. Fifty patients participated in the study. Measures included scales of self and object representations (S. J. Blatt, S. A. Bers, & C. E. Schaffer, 1993; S. J. Blatt, H. Wiseman, E. Prince-Gibson, & C. Gatt, 1991), as well as the Personality Organization Diagnostic Form (L. Diguer & L. Normandin, 1997) and estimations of psychiatric severity. Results showed that PO groups differed in terms of the integration of the object and its valence. It was also observed that although object and self representations were closely intertwined, the latter showed more discrimination between POs than the former. Psychiatric severity was shown to correlate more with object representations than self representations.

Do women change their breast cancer mammogram screening behaviour after BRCA1/2 testing?

Little is known about the change in mammograms use by women after BRCA1/2 genetic testing. We compared the rate of bilateral mammograms after and prior to BRCA1/2 testing, according to test result. Information from the Quebec Health Insurance Board database was used to identify all registered mammograms delivered between May 1, 1998 and March 31, 2012 to a cohort of 396 unaffected French Canadian women tested for BRCA1/2 mutations. Mammograms incidence density ratios were calculated using the Cox proportional hazards model for repeated events. BRCA1/2 mutation carriers and women with an inconclusive result had more mammograms after, than prior to, genetic testing. Non-carriers did not receive more mammograms. The observed increase in mammography screening in BRCA1/2 carriers is consistent with the high risk of developing breast cancer in this group. The estimation of the cancer risk associated with an inconclusive result is based on familial cancer history, and women who received this result appear to have received follow-up as if at high risk. The fact that non-carriers did not change their use of mammograms after genetic testing may possibly reflect a ‘defensive medicine’ approach by some physicians or the women’s preference.

Usefulness of Canadian Public Health Insurance Administrative Databases to Assess Breast and Ovarian Cancer Screening Imaging Technologies for BRCA1/2 Mutation Carriers

Purpose In Canada, recommendations for clinical management of hereditary breast and ovarian cancer among individuals carrying a deleterious BRCA1 or BRCA2 mutation have been available since 2007. Eight years later, very little is known about the uptake of screening and risk-reduction measures in this population. Because Canadas public health care system falls under provincial jurisdictions, using provincial health care administrative databases appears a valuable option to assess management of BRCA1/2 mutation carriers. The objective was to explore the usefulness of public health insurance administrative databases in British Columbia, Ontario, and Quebec to assess management after BRCA1/2 genetic testing. Methods Official public health insurance documents were considered potentially useful if they had specific procedure codes, and pertained to procedures performed in the public and private health care systems. Results All 3 administrative databases have specific procedures codes for mammography and breast ultrasounds. Only Quebec and Ontario have a specific procedure code for breast magnetic resonance imaging. It is impossible to assess, on an individual basis, the frequency of others screening exams, with the exception of CA-125 testing in British Columbia. Screenings done in private practice are excluded from the administrative databases unless covered by special agreements for reimbursement, such as all breast imaging exams in Ontario and mammograms in British Columbia and Quebec. There are no specific procedure codes for risk-reduction surgeries for breast and ovarian cancer. Conclusion Population-based assessment of breast and ovarian cancer risk management strategies other than mammographic screening, using only administrative data, is currently challenging in the 3 Canadian provinces studied.

Issues related to family history of cancer at the end of life: a palliative care providers’ survey

Addressing the concerns of end-of-life patients or their relatives about their family history of cancer could benefit patients and family members. Little is known about how palliative care providers respond to these concerns. The purpose of this pilot study was to assess palliative care providers’ knowledge about familial and hereditary cancers and explore their exposure to patients’ and relatives’ concerns about their family history of cancer, and their self-perceived ability to deal with such concerns. A cross-sectional survey was conducted in the Quebec City (Canada) catchment area among palliative care professionals. Fifty-eight palliative care professionals working in hospice, home care and hospital-based palliative care units completed the questionnaire. All physicians and 63% of nurses occasionally addressed concerns of patients and relatives about their family history of cancer, but they reported a low confidence level in responding to such concerns. They also showed knowledge gaps in defining features of a significant family history of cancer, and most (78%) would welcome specific training on the matter. Our findings highlight the relevance of offering education and training opportunities about familial cancers and associated risks to palliative care providers. The needs and concerns of end-of-life patients and their families need to be explored to ensure palliative care providers can adequately assist patients and their relatives about their family history of cancer. Ethical implications should be considered.

Clinical follow-up and breast and ovarian cancer screening of true BRCA1/2 noncarriers: a qualitative investigation

Purpose:Most women from BRCA1/2 mutation–positive families who did not inherit the familial mutation have breast and ovarian cancer risks similar to those of women of the same age in the general population. However, recent studies suggest that some of these noncarriers may exhibit screening practices that may be considered as excessive compared to general population screening guidelines. Reasons for such tendencies remain largely unknown. This study aims to better understand how the implications of a noncarrier status are explained to these women and how their own realization of this status affects their screening behaviors.Methods:A qualitative study was conducted with five focus groups (n = 28) in Quebec City and Montreal, Canada.Results:Thematic analysis of the discussions highlighted four major themes: (i) acquiring a noncarrier identity takes place progressively; (ii) noncarriers show a range of opinions about screening; (iii) noncarriers have mixed feelings about the follow-up by their physicians and gynecologists; and (iv) noncarriers need more information in a context where genetics progresses ever more rapidly.Conclusion:Our results provide novel insights regarding the physician–patient interaction and the organizational aspects of the health-care system that may significantly impact the cancer screening practices of BRCA1/2 noncarriers.Genet Med 18 6, 627–634.

Protocole de prise en charge multidisciplinaire: expérience de femmes québécoises ayant subi une mastectomie prophylactique

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.

Protocole de prise en charge multidisciplinaire : expérience de femmes québécoises ayant subi une mastectomie prophylactiqueMultidisciplinary clinical management for prophylactic mastectomy: views of women from one centre in Quebec City

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.

Communication of genetic information in the palliative care context: Ethical and legal issues

As scientific understanding of the heritable aspects of cancer deepens, the need to effectively communicate genetic information within the families of cancer patients becomes more acute. In the palliative care context, the question of when and how to disclose a patient’s genetic information raises a host of ethical, legal, and social issues, including the challenges of communicating during the end-of-life stage and complex familial and cultural dynamics. In this paper, the authors outline the legal components of these issues in three civil law jurisdictions with similarly comprehensive approaches to healthcare and palliative care - Quebec, Belgium, and France - and provide insights from bioethics literature and normative documents on the disclosure of genetic information at the end of life. From this research, the authors propose a strategy for palliative care providers who are considering available options to communicate hereditary health information.

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.