Information needs on breast cancer genetic and non-genetic risk factors in relatives of women with a BRCA1/2 or PALB2 pathogenic variant

Objectives: Comprehensive breast cancer (BC) risk models integrating effects of genetic (GRF) and non-genetic risk factors (NGRF) may refine BC prevention recommendations. We explored the perceived information received on BC risk factors, and related characteristics, in female relatives of women with a BRCA1/2 or PALB2 pathogenic variant, undergoing BC risk assessment using the CanRisk(C) prediction tool.Methods: Of 200 consecutive cancer-free women approached after the initial genetic consultation, 161 (80.5%) filled in questionnaires on their perception of information received and wished further information on BC risk factors (e.g., being a carrier of a moderate risk altered gene, personal genetic profile, lifestyles). Multilevel multivariate linear models were performed accounting for the clinician who met the counselee and exploring the effect of counselees' socio-demographic, familial and psychological characteristics on the perceived extent of information received.Results: Perceived no/little information received and wish for further information were more frequent for NGRF (>50%) than for GRF, especially high-risk genes (<20%). Perceived amount of information received and desire for further information were inversely correlated (p=<0.0001). Higher education level related to lower perceived levels of information received on GRF. Younger counselees' age (beta = 0.13, p = 0.02) and less frequent engagement coping (e.g., inclination to solicit information) (beta = 0.24, p = 0.02) related to lower perceived information received about NGRF. Other assessed counselees' features were not found to be associated to GRF and NGRF information perception.Conclusions: Awareness of counselees' perceived lack of information on BC risk factors indicates a need to enhance evidence-based information on BC NGRF especially. (C) 2021 The Authors. Published by Elsevier Ltd.Genome Instability and Cance

Approche "bien-être au travail" pour la prévention des RPS. SATIN (version 2.1). Questionnaire d'évaluation des conditions de travail et de la santé. Manuel d'utilisation.

La prise en compte des risques psychosociaux dans l'entreprise impose la construction d'un dialogue impliquant, au delà des partenaires de la prévention, les fonctions ressources humaines et management. En effet, des actions sur des éléments ressortant de la sphère organisationnelle sont indispensables dans la mise en place d'actions de réduction de ces risques ou de promotion du bien-être au travail. Ce dialogue devrait être facilité dès lors qu'on dispose de données quantitatives sur la santé psychosociale et les difficultés organisationnelles ressenties par les équipes de travail ou dans les collectifs de métier. C'est dans ce cadre qu'a été développé le questionnaire SATIN, conçu pour pouvoir s'intégrer dans la démarche habituelle du médecin (visites médicales périodiques). Cette note scientifique présente l'outil et ses modalités de mise en oeuvre. Elle annule et remplace la NS 272 « SATIN. Un questionnaire d'évaluation de la santé au travail pour la prévention, le diagnostic et l'intervention. Manuel d'utilisation.

Approche "bien-être au travail" pour la prévention des RPS. SATIN (version 2.1). Questionnaire d'évaluation des conditions de travail et de la santé. Démarche de validation.

Le questionnaire SATIN est un outil prévu pour mieux prendre en compte les risques psychosociaux dans les entreprises. Les données quantitatives qu’il permet d’obtenir sur la santé psychosociale et les difficultés organisationnelles ressenties par les équipes de travail doivent faciliter le dialogue entre les partenaires de la prévention, les fonctions ressources humaines et de management. Il est donc conçu pour faire partie d’une démarche globale et aider au choix des actions à mettre en oeuvre pour réduire les risques psychosociaux et promouvoir le bien-être. Cette note scientifique et technique décrit la démarche de validation suivie pour dégager les qualités psychométriques de l’outil. Elle complète la NST 299 (référence INRS-Biblio 00082076) qui présente la démarche de prévention basée sur ce questionnaire

Quality of care in the oncology outpatient setting from patients' perspective: a systematic review of questionnaires' content and psychometric performance

Background: Cancer care is increasingly provided in the outpatient setting, requiring specific monitoring of care quality. The patients' perspective is an important indicator of care quality and needs to be assessed with well designed, psychometrically sound questionnaires. We performed a systematic literature review of currently available patient satisfaction measures for use in cancer outpatient care settings. Methods: We carried out MEDLINE/PubMed, PsycINFO, CINAHL, and Scopus searches of papers published over the past 15 years that describe cancer patient satisfaction questionnaires for use in the outpatient setting. We used the adapted COSMIN checklist to assess the quality of the questionnaires' measurement properties. Results: A total of 6677 citations were identified and 76 relevant articles were read, of which 55 were found either not to be relevant or to provide insufficient psychometric information. The remaining 21 studies pertained to 14 patient satisfaction questionnaires. Continuity and transition, accessibility, and involvement of family/friends were less frequently addressed despite their relevance in outpatient oncology. Almost half of the psychometric studies did not provide information on item level missing data. Most internal consistency estimates (Cronbach's α) were satisfactory. Few studies reported test-retest assessment (n = 5), used confirmatory factor analysis (n = 2), or assessed fit to a graded response item response theory model (n = 3). Only three questionnaires were cross-culturally validated. Conclusion: Important aspects of care may be missed by current patient satisfaction questionnaires for use in the cancer outpatient setting. Additional evidence is needed of their psychometric performance, especially for cross-cultural comparative assessments

Assessment of psychosocial difficulties by genetic clinicians and distress in women at high risk of breast cancer: a prospective study

We examined how often genetic clinicians correctly identify psychosocial difficulties in women at high breast cancer risk and explored effects of this assessment and the genetic test result on counselees' distress. A prospective observational study of counselee-clinician dyads was performed in three French, German and Spanish genetic clinics, involving 709 counselees (participation rate, 83.4%) and 31 clinicians (participation rate, 100%). Counselee-clinician agreement in perceived psychosocial difficulties was measured after the pre-test genetic consultation. Multivariate mixed linear models accounting for clinicians were tested. Predicted distress levels were assessed after the pre- (T1) and post-test result disclosure consultations (T2). Depending on the difficulty domain, clinicians adequately assessed the presence or absence of difficulties in 51% ("familial issues") to 59% ("emotions") of counselees. When counselees' and clinicians' perceptions disagreed, difficulties were generally underestimated by clinicians. Counselees' distress levels remained stable from T1 to T2, irrespective of clinicians' appraisal adequacy, and the genetic test result disclosure. Psychological referral need were found in 20-42% of counselees, more frequently observed for difficulties in the "emotions" domain. Our findings suggest that the genetic test result is a suboptimal indicator for psychological referral. Instead, clinicians should focus on emotions expressed by counselees to appraise their needs for psychological support.Molecular tumour pathology - and tumour geneticsMTG1 - Moleculaire genetica en pathologie van borstkanke

Assessment of psychosocial difficulties by genetic clinicians and distress in women at high risk of breast cancer: a prospective study

We examined how often genetic clinicians correctly identify psychosocial difficulties in women at high breast cancer risk and explored effects of this assessment and the genetic test result on counselees' distress. A prospective observational study of counselee-clinician dyads was performed in three French, German and Spanish genetic clinics, involving 709 counselees (participation rate, 83.4%) and 31 clinicians (participation rate, 100%). Counselee-clinician agreement in perceived psychosocial difficulties was measured after the pre-test genetic consultation. Multivariate mixed linear models accounting for clinicians were tested. Predicted distress levels were assessed after the pre- (T1) and post-test result disclosure consultations (T2). Depending on the difficulty domain, clinicians adequately assessed the presence or absence of difficulties in 51% ("familial issues") to 59% ("emotions") of counselees. When counselees' and clinicians' perceptions disagreed, difficulties were generally underestimated by clinicians. Counselees' distress levels remained stable from T1 to T2, irrespective of clinicians' appraisal adequacy, and the genetic test result disclosure. Psychological referral need were found in 20-42% of counselees, more frequently observed for difficulties in the "emotions" domain. Our findings suggest that the genetic test result is a suboptimal indicator for psychological referral. Instead, clinicians should focus on emotions expressed by counselees to appraise their needs for psychological support