Experience of BRCA1/2 mutation-negative young women from families with hereditary breast and ovarian cancer: a qualitative study

BACKGROUND: Little is known about the experience of young women who become aware of their parent’s BRCA1 or BRCA2 (BRCA) mutation status as adolescents or young adults. There is also currently a gap in the literature pertaining to those who are found to be negative for their familial mutation. We aimed to investigate the experience of these mutation-negative young women from hereditary breast and ovarian cancer (HBOC) families. METHODS: Using a semi-structured questionnaire we interviewed 8 women. All of the women were non-carriers of their familial mutation and had learned of the mutation in their family as adolescents or young adults at least 6 months prior to undergoing genetic testing. All interviews were audio recorded, transcribed, and independently analyzed by the investigators. This was followed by an in-depth cross-case analysis, enabling the formulation of emergent themes. RESULTS: The women’s age ranged from 22 to 37 years old and all were of Ashkenazi Jewish descent. Prominent emergent themes from the interviews included the impact of how and when the familial mutation status was disclosed, the factors influencing when a young woman chooses to undergo predictive genetic testing, the predictors of post-test adjustment and risk perception, as well as the impact of familial cancer experience versus the familial mutation. CONCLUSIONS: By eliciting detailed patient narratives we have begun to show that this generation of BRCA mutation-negative young women is likely still affected by the degree of cancer history in their family, even with their understanding of the genetic contribution to disease. Larger studies with tightened participant characteristics, as well as studies involving women from different cultural backgrounds, are needed to further define the experience and needs of true negative young women from HBOC families

Depression prevalence using the HADS-D compared to SCID major depression classification:An individual participant data meta-analysis

Objectives: Validated diagnostic interviews are required to classify depression status and estimate prevalence of disorder, but screening tools are often used instead. We used individual participant data meta-analysis to compare prevalence based on standard Hospital Anxiety and Depression Scale – depression subscale (HADS-D) cutoffs of ≥8 and ≥11 versus Structured Clinical Interview for DSM (SCID) major depression and determined if an alternative HADS-D cutoff could more accurately estimate prevalence. Methods: We searched Medline, Medline In-Process & Other Non-Indexed Citations via Ovid, PsycINFO, and Web of Science (inception-July 11, 2016) for studies comparing HADS-D scores to SCID major depression status. Pooled prevalence and pooled differences in prevalence for HADS-D cutoffs versus SCID major depression were estimated. Results: 6005 participants (689 SCID major depression cases) from 41 primary studies were included. Pooled prevalence was 24.5% (95% Confidence Interval (CI): 20.5%, 29.0%) for HADS-D ≥8, 10.7% (95% CI: 8.3%, 13.8%) for HADS-D ≥11, and 11.6% (95% CI: 9.2%, 14.6%) for SCID major depression. HADS-D ≥11 was closest to SCID major depression prevalence, but the 95% prediction interval for the difference that could be expected for HADS-D ≥11 versus SCID in a new study was −21.1% to 19.5%. Conclusions: HADS-D ≥8 substantially overestimates depression prevalence. Of all possible cutoff thresholds, HADS-D ≥11 was closest to the SCID, but there was substantial heterogeneity in the difference between HADS-D ≥11 and SCID-based estimates. HADS-D should not be used as a substitute for a validated diagnostic interview.This study was funded by the Canadian Institutes of Health Research (CIHR, KRS-144045 & PCG 155468). Ms. Neupane was supported by a G.R. Caverhill Fellowship from the Faculty of Medicine, McGill University. Drs. Levis and Wu were supported by Fonds de recherche du Québec - Santé (FRQS) Postdoctoral Training Fellowships. Mr. Bhandari was supported by a studentship from the Research Institute of the McGill University Health Centre. Ms. Rice was supported by a Vanier Canada Graduate Scholarship. Dr. Patten was supported by a Senior Health Scholar award from Alberta Innovates, Health Solutions. The primary study by Scott et al. was supported by the Cumming School of Medicine and Alberta Health Services through the Calgary Health Trust, and funding from the Hotchkiss Brain Institute. The primary study by Amoozegar et al. was supported by the Alberta Health Services, the University of Calgary Faculty of Medicine, and the Hotchkiss Brain Institute. The primary study by Cheung et al. was supported by the Waikato Clinical School, University of Auckland, the Waikato Medical Research Foundation and the Waikato Respiratory Research Fund. The primary study by Cukor et al. was supported in part by a Promoting Psychological Research and Training on Health-Disparities Issues at Ethnic Minority Serving Institutions Grants (ProDIGs) awarded to Dr. Cukor from the American Psychological Association. The primary study by De Souza et al. was supported by Birmingham and Solihull Mental Health Foundation Trust. The primary study by Honarmand et al. was supported by a grant from the Multiple Sclerosis Society of Canada. The primary study by Fischer et al. was supported as part of the RECODEHF study by the German Federal Ministry of Education and Research (01GY1150). The primary study by Gagnon et al. was supported by the Drummond Foundation and the Department of Psychiatry, University Health Network. The primary study by Akechi et al. was supported in part by a Grant-in-Aid for Cancer Research (11−2) from the Japanese Ministry of Health, Labour and Welfare and a Grant-in-Aid for Young Scientists (B) from the Japanese Ministry of Education, Culture, Sports, Science and Technology. The primary study by Kugaya et al. was supported in part by a Grant-in-Aid for Cancer Research (9–31) and the Second-Term Comprehensive 10-year Strategy for Cancer Control from the Japanese Ministry of Health, Labour and Welfare. The primary study Ryan et al. was supported by the Irish Cancer Society (Grant CRP08GAL). The primary study by Keller et al. was supported by the Medical Faculty of the University of Heidelberg (grant no. 175/2000). The primary study by Love et al. (2004) was supported by the Kathleen Cuningham Foundation (National Breast Cancer Foundation), the Cancer Council of Victoria and the National Health and Medical Research Council. The primary study by Love et al. (2002) was supported by a grant from the Bethlehem Griffiths Research Foundation. The primary study by Löwe et al. was supported by the medical faculty of the University of Heidelberg, Germany (Project 121/2000). The primary study by Navines et al. was supported in part by the Spanish grants from the Fondo de Investigación en Salud, Instituto de Salud Carlos III (EO PI08/90869 and PSIGEN-VHC Study: FIS-E08/00268) and the support of FEDER (one way to make Europe). The primary study by O'Rourke et al. was supported by the Scottish Home and Health Department, Stroke Association, and Medical Research Council. The primary study by Sanchez-Gistau et al. was supported by a grant from the Ministry of Health of Spain (PI040418) and in part by Catalonia Government, DURSI 2009SGR1119. The primary study by Gould et al. was supported by the Transport Accident Commission Grant. The primary study by Rooney et al. was supported by the NHS Lothian Neuro-Oncology Endowment Fund. The primary study by Schwarzbold et al. was supported by PRONEX Program (NENASC Project) and PPSUS Program of Fundaçao de Amparo a esquisa e Inovacao do Estado de Santa Catarina (FAPESC) and the National Science and Technology Institute for Translational Medicine (INCT-TM). The primary study by Simard et al. was supported by IDEA grants from the Canadian Prostate Cancer Research Initiative and the Canadian Breast Cancer Research Alliance, as well as a studentship from the Canadian Institutes of Health Research. The primary study by Singer et al. (2009) was supported by a grant from the German Federal Ministry for Education and Research (no. 01ZZ0106). The primary study by Singer et al. (2008) was supported by grants from the German Federal Ministry for Education and Research (# 7DZAIQTX) and of the University of Leipzig (# formel. 1–57). The primary study by Meyer et al. was supported by the Federal Ministry of Education and Research (BMBF). The primary study by Stone et al. was supported by the Medical Research Council, UK and Chest Heart and Stroke, Scotland. The primary study by Turner et al. was supported by a bequest from Jennie Thomas through Hunter Medical Research Institute. The primary study by Walterfang et al. was supported by Melbourne Health. Drs. Benedetti and Thombs were supported by FRQS researcher salary awards. No other authors reported funding for primary studies or for their work on this study. No funder had any role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication

Comprendre le rôle du soutien informationnel sur le cancer dans l’utilisation des services de santé chez les personnes nouvellement diagnostiquées

Cette étude qualitative a été réalisée dans le but d’explorer le rôle du soutien informationnel dans l’utilisation des services de santé par des individus diagnostiqués d’un cancer. Des entrevues individuelles en profondeur ont été faites avec des participants (N=20) nouvellement diagnostiqués avec un cancer du sein ou avec un cancer de la prostate et recevant des traitements de radiothérapie en clinique d’oncologie à Montréal, Québec. Une analyse de contenu révèle que l’expérience vécue par les participants varie selon les dimensions suivantes : (1) le soutien informationnel tangible, lequel facilite, confirme, normalise et oriente les décisions des participants dans l’utilisation des services de santé; (2) le soutien informationnel paralysant, lequel amène de la détresse psychologique, de l’opposition, de la méfiance et de la confusion dans l’utilisation des services; et (3) le soutien informationnel mixte lié aux perceptions d’avoir reçu à la fois de l’information aidante et non aidante (et tolérée) qui optimise peu l’utilisation des services. Les connaissances sur le comment et le moment où le soutien informationnel est le plus pertinent peuvent optimiser le bien-être et l’utilisation mieux informée des services en oncologie

Understanding the role of cancer informational support in relation to health care service use among newly diagnosed individuals

A qualitative study was undertaken to explore the role of informational support in relation to health care service use among individuals with cancer. In-depth interviews were conducted with participants (N=20) newly diagnosed with either breast or prostate cancer receiving radiotherapy from an oncology clinic in Montreal, Quebec. Content analysis revealed that participants’ perceptions about their experience with cancer informational support in relation to health care services varied along the following dimensions: (1) Cancer informational support was tangible, which enabled, confirmed, normalized, and directed their decisions about reliance on health services; (2) Cancer informational support was somewhat paralyzing, which led to distress, conflict, reduced confidence in the health care system and, at times, misuse of health care services; and (3) Cancer informational support was limiting, with perceptions of having received both helpful and unhelpful cancer information which, in turn, although tolerated, offered little guidance in terms of reliance on the most appropriate services. Knowledge about how and when informational support may be most timely may optimize individuals’ well being and further guide their use of cancer-related services

Les outils de cybersanté et les soins infirmiers en oncologie : perceptions infirmières et contributions aux soins des patients et à la pratique avancée

Alors que les infirmières en oncologie voient leur discipline évoluer rapidement et la pression dans leur milieu de travail croître, l’intégration à la pratique de plateformes de santé en ligne fondées sur la recherche apparaît prometteuse. La présente étude explore les perceptions infirmières quant à l’utilité des outils de cybersanté en ciblant particulièrement l’outil de navigation interactive en oncologie, ou « Oncology Interactive Navigator » (OINMC), un instrument qui pourrait améliorer la pratique, de même que les interactions avec les patients. Des groupes de discussion avec des infirmières en oncologie ont été organisés à deux reprises : une fois avant l’exposition à l’OINMC (T1, n=8) puis après 4 semaines d’accès illimité (T2, n=7). Trois thèmes sont ressortis de l’analyse qualitative par comparaison constante : 1) les principaux facteurs propulsant la cybersanté sont multidimensionnels et en constante évolution; 2) la cybersanté répond aux besoins des patients et soutient la pratique, jouant ainsi un double rôle; 3) la cybersanté sert de catalyseur au perfectionnement professionnel et au réseautage. La cybersanté est attrayante pour les infirmières en oncologie, car elle permet à la fois de faire avancer la pratique et d’améliorer les soins aux patients. La recherche à venir devrait examiner les pratiques exemplaires permettant à tous les intervenants concernés de la mettre en œuvre de manière optimale

E-health tools in oncology nursing: Perceptions of nurses and contributions to patient care and advanced practice

As oncology nurses confront a rapidly evolving field with increased workplace pressure, the integration of evidence-based connected health platforms within practice presents promise. This study explores nurses’ perceptions regarding the utility of e-health tools, with a focus on the Oncology Interactive Navigator (OINTM), as a potential contributor to their practice and interactions with patients. Focus groups with oncology nurses were conducted at two time points: prior to exposure to the OINTM (T1, n=8) and four weeks post unrestricted tool access (T2, n=7). Using qualitative constant comparison analysis, three themes emerged: (1) Key factors driving e-health use are multidimensional and evolving; (2) Dual role of e-health in meeting patient needs and supporting practice; (3) E-health as a catalyst for professional development and networking. E-health is appealing to oncology nurses, as it serves to advance practice and support patient care. Future research should explore best practices for optimal clinical implementation among all stakeholders involved

Communication in cancer care: Psycho social, interactional, and cultural issues. A general overview and the example of India

Communication is a core aspect of psycho-oncology care. This article examines key psychosocial, cultural, and technological factors that affect this communication. Drawing from advances in clinical work and accumulating bodies of empirical evidence, the authors identify determining factors for high quality, efficient, and sensitive communication and support for those affected by cancer. Cancer care in India is highlighted as a salient example. Cultural factors affecting cancer communication in India include beliefs about health and illness, societal values, integration of spiritual care, family roles, and expectations concerning disclosure of cancer information, and rituals around death and dying. The rapidly emerging area of e-health significantly impacts cancer communication and support globally. In view of current globalization, understanding these multidimensional psychosocial, and cultural factors that shape communication are essential for providing comprehensive, appropriate and sensitive cancer care

Living with cancer and other chronic conditions: Patients’ perceptions of their healthcare experience

Multimorbidity is known to contribute to the complexity of care for patients with cancer. This qualitative study begins to explore cancer patients’ experience with multimodal treatments, that is, treatments for multiple chronic conditions, as well as issues related to navigating the healthcare system. Participants (n=10) were recruited from an ambulatory cancer centre in a large, university-affiliated hospital in Montreal, Quebec. Important challenges were reported in terms of striking a fine balance between acute health needs and underlying ongoing chronic condition(s), experiencing unforeseen treatment complications, and negotiating silos across medical specialties. Participants also wished to be better known by the healthcare team. When reporting a positive care coordination experience, participants often attributed it to the intervention by a nurse navigator. Lastly, participants expected a more personalized care approach and would have liked to be included in multidisciplinary board meetings. Study results underscore the impetus to better integrate care across diseases, enhance person-centred care, and support patients who strive to balance competing needs when facing multimorbidity

Vivre avec un cancer et d’autres maladies chroniques : perceptions des patients au sujet de leur expérience des soins de santé

On sait que la multimorbidité contribue à la complexité des soins prodigués aux patients atteints de cancer. La présente étude qualitative explore le vécu des patients qui reçoivent des traitements multimodaux (traitements pour de multiples maladies chroniques), ainsi que les difficultés pour ces patients à naviguer dans le système de soins de santé. Les participants (n = 10) ont été recrutés dans un centre ambulatoire de cancérologie d’un grand hôpital affilié à une université, à Montréal (province de Québec). Ils ont rapporté qu’il était particulièrement difficile d’atteindre un juste équilibre entre les besoins de santé aigus et la présence de maladies chroniques persistantes, de vivre des complications imprévues liées au traitement, et d’arriver à pallier le manque de liaison entre les spécialités médicales. Les participants auraient également souhaité que l’équipe soignante les connaisse mieux. Lorsqu’ils signalaient une expérience de coordination des soins positive, les participants l’associaient souvent à l’intervention d’une infirmière pivot. Finalement, les participants auraient aimé que l’approche de soins soit plus personnalisée et qu’ils puissent se joindre aux réunions du comité multidisciplinaire. Les résultats de l’étude soulignent le désir d’améliorer l’intégration des soins entre les maladies, les soins axés sur la personne et le soutien des patients qui cherchent à équilibrer des besoins concurrents en contexte de multimorbidité