[Experiences of patients with cancer during the first COVID-19 lockdown: What was the impact on the patients' healthcare pathway, mental condition, and access to supportive care in cancer?] / Ressenti des patients atteints de cancer pendant le premier confinement COVID-19 : quel impact sur le parcours de soins, l'état mental et l'accès aux soins oncologiques de support ?

INTRODUCTION: The COVID-19 pandemic disrupted the organisation of the healthcare system. Very little data is available regarding the impact of the COVID-19 pandemic on patients' perceptions of their healthcare pathway. The objective of this survey was to evaluate cancer patients' perceptions of the impact of the first COVID-19 lockdown on continuity of care, their mental condition, as well as their access to Supportive Care in Cancer (SCC). METHODS: Between June 2nd and 30th, 2020, an anonymous questionnaire was sent out to the patients who visited 17 healthcare establishments in the Centre-Val de Loire region. RESULTS: Our survey questioned 861 patients, amongst which 839 were selected. The population was predominantly female (58%). Breast cancer was the most represented (27%). Approximately three patients out of four considered that their care was maintained during the lockdown. In total, 348 patients (44%) reported an altered mental status. Approximately 1/4th of patients benefited from SCC. More than half of the patients felt that SCC was not relevant to their situation, although 40% of these patients expressed mental issues. CONCLUSION: Our survey highlighted a negative impact on patients' mental condition and a low use of SCC in spite of existing needs. This demonstrates the necessity of evaluating the patients' needs and offering adequate SCC at various stages of the healthcare pathway, as well as the need for a clearly identifiable offer for the healthcare professionals and the patients.

Understanding Inequalities in the Uptake of Supportive Care to Improve Practices in the Cancer Care Continuum.

(1) Background: While inequalities in the prevalence of cancer, access to care, and survival have been well documented, less research has focused on inequalities in the uptake of supportive oncology care. Given its contribution to improving the quality of life of people affected by cancer, access to such care is a major public health issue. The present study focuses on the access and uptake of those supportive oncology care services. (2) Methods: This study is based on qualitative research methodology, using a thematic analysis tree on NVivo© analysis software. First, an exploratory survey was conducted with users of oncology services, and professionals from these services and supportive oncology care. Then, individual interviews were conducted in June 2022 among people who are currently being treated or have been treated for cancer. (3) Results: The experiences of the 33 respondents revealed that significant variations in the uptake of supportive oncology care are underpinned by identifiable disparities in their healthcare pathways: in their assimilation of information, difficulties in accessing oncology care, personal reluctance and motivations, perceived needs and benefits, and use of other medicines. (4) Conclusion: This study aims to gain some insight into disparities in the uptake of supportive care in the Centre-Val de Loire region (France). Thus, it provides a better understanding of the complex ways in which these inequalities in supportive oncology care uptake are constructed.

Cross-Cultural Adaptation and Validation of a French Version of the Genetic Counseling Satisfaction Scale (GCSS) as an Outcome Measure of Genetic Counseling for Hereditary Breast and Ovarian Cancer.

(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.

Survey of palliative care providers' needs, perceived roles, and ethical concerns about addressing cancer family history at the end of life.

OBJECTIVE: Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers' views on their main needs, roles, and ethical concerns regarding cancer family history discussions. METHOD: The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted. RESULTS: Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients' concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members. SIGNIFICANCE OF RESULTS: Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers' needs might help optimize cancer predisposition management in palliative care.

What do cancer patients' relatives think about addressing cancer family history and performing genetic testing in palliative care?

Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.

Les réseaux territoriaux de cancérologieTerritorial oncology networks.

In the often long and difficult care pathway of patients with cancer, the oncology care network has an important role to play. Of all the coordination programmes, it is the one which enables the patient's medical and psychosocial situation to be constantly evaluated throughout their illness.

Vitamin C is not the Missing Link Between Cigarette Smoking and Spinal Pain.

STUDY DESIGN: A nationwide cross-sectional study. OBJECTIVES: To measure the associations between cigarette smoking (defined as serum cotinine concentration >15 ng/mL) and the 3-month prevalence of spinal pain (neck pain, low back pain, low back pain with pain below knee, and self-reported diagnosis of arthritis/rheumatism) and related limitations, and to verify whether these associations are mediated by serum concentrations of vitamin C. SUMMARY OF BACKGROUND DATA: Cigarette smoking has been consistently associated with back pain, but this association has never been explained. Because vitamin C has recently been reported to be associated with spinal pain and related functional limitations, and the metabolism of vitamin C differs between smokers and nonsmokers, we hypothesized that the prevalence of spinal pain and related limitations might be greater among smokers because they are more susceptible to be in a state of hypovitaminosis C. METHODS: We conducted secondary analyses of National Health and Nutrition Examination Survey (NHANES) 2003 to 2004 data on 4438 individuals aged ≥20 years. RESULTS: Serum concentrations of vitamin C and cotinine were strongly and inversely correlated (r = -0.35, P < 0.0001). Smoking was statistically associated with the prevalence of neck pain [adjusted odds ratio: aOR: 1.25; 95% confidence interval (95% CI): 1.06-1.47], low back pain (aOR: 1.20; 95% CI: 1.04-1.39), and low back pain with pain below knee (aOR: 1.58; 95% CI: 1.13-2.22) and related limitations, with a dose-response relationship (P < 0.05). However, the associations between smoking and spinal pain were not mediated by concentrations of vitamin C. CONCLUSION: These results confirm the relationship between smoking and spinal pain, but they do not support a mediating effect of vitamin C on this relationship. LEVEL OF EVIDENCE: 2.

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.

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.

Serum vitamin C and spinal pain: a nationwide study.

Back pain brings about one of the heaviest burden of disease. Despite much research, this condition remains poorly understood, and effective treatments are frustratingly elusive. Thus, researchers in the field need to consider new hypotheses. Vitamin C (ascorbic acid) is an essential cofactor for collagen crosslinks, a key determinant of ligament, tendon, and bone quality. Recent studies have reported high frequency of hypovitaminosis C in the general population. We hypothesized that lack of vitamin C contributes to poor collagen properties and back pain. We conducted this study to examine the associations between serum concentration of vitamin C and the prevalence of spinal pain and related functional limitations in the adult general population. This study used nationwide cross-sectional data from the U.S. National Health and Nutrition Examination Survey (NHANES) 2003-2004. Data were available for 4742 individuals aged ≥20 years. Suboptimal serum vitamin C concentrations were associated with the prevalence of neck pain (adjusted odds ratio [aOR]: 1.5; 95% confidence interval [CI]: 1.2-2.0), low back pain (aOR: 1.3; 95% CI: 1.0-1.6), and low back pain with pain below knee (aOR: 1.3; 95% CI: 1.0-1.9) in the past 3 months, self-reported diagnosis of arthritis/rheumatism (aOR: 1.4; 95% CI: 1.2-1.7), and related functional limitations' score (adjusted difference of means [aB]: 0.03; 95% CI: 0.00-0.05). The prevalence of hypovitaminosis C in the general population is high. Our study shows associations between vitamin C and spinal pain that warrant further investigation to determine the possible importance of vitamin C in the treatment of back pain patients.

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 Canada's 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.

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.

Health-related empowerment in cancer: validity of scales from the Health Education Impact Questionnaire.

BACKGROUND: Empowerment refers to an individual's feelings of being able to manage the challenges of the cancer experience and of having a sense of control over one's 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. METHODS: Adults who were diagnosed with cancer < 3 years earlier were recruited from a population-based cancer registry and from the Canadian Cancer Society's information and peer-support programs. The 731 participants completed a mailed questionnaire, which included the heiQ scales, related constructs, and demographics. Reliability was assessed using Cronbach α values, and validity was determined using confirmatory factor analysis and scale correlations with related constructs (self-efficacy, intrusive thoughts about cancer, and mental and physical health). RESULTS: The hypothesized 5-factor model fit the data adequately (chi-square statistic, 528.17; degrees of freedom, 265; root mean square error of approximation, .04; non-normed fit index, .99; comparative fit index, 1.00; standardized root mean residual, .05). Factor loadings were high (23 of 25 were ≥ .70), and the factor correlations indicated separate but related constructs. Cronbach α values ranged from .75 to .90. A priori hypotheses about the correlations between heiQ scales and related constructs all were supported. CONCLUSIONS: The current results support the validity of these 5 heiQ scales as generic measures of health-related empowerment in the cancer setting. These scales could fill an important gap in the measures currently available to evaluate proximal effects of support interventions.

Validating the content of a brief informational intervention to empower patients and spouses facing breast cancer: perspectives of both couple members.

PURPOSE: The study objectives were to identify key information components that would be the basic content of a brief informational intervention, developed from a population perspective, to empower individual couple members facing breast cancer and to validate the relevance and acceptability of these components. METHODS: A review of information relevant to couples facing cancer presented in internet sites and documents of national cancer organizations was made to identify information components to include in a brief informational intervention. These information components were framed as messages, that is, very brief sentences or tips. To validate the relevance and acceptability of these messages, six focus groups were conducted in Quebec City and Montreal among women who had had breast cancer and their spouses. Reactions to the messages were synthesized by analyzing the verbatim transcripts. RESULTS: A total of 70 individuals (35 women with an average of 14 months since diagnosis and 35 spouses) participated in the groups. The content of almost all messages was seen as relevant, although nuances and improvements were discussed. However, the message format provoked irritation and will need improvement. CONCLUSIONS: Findings provide validation of the relevance, from the viewpoint of women and their spouses, of the message content to be part of a brief informational intervention intended to empower couples as they cope with breast cancer. IMPLICATIONS FOR CANCER SURVIVORS: Couples approved of the idea of being guided in their adjustment to breast cancer. However, the message format requires adaptation and further testing.

[Multidisciplinary clinical management for prophylactic mastectomy: views of women from one centre in Quebec City]. / 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.