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      A Collaborative Model to Implement Flexible, Accessible and Efficient Oncogenetic Services for Hereditary Breast and Ovarian Cancer: The C-MOnGene Study

      methods-article
      1 , 1 , 2 , 3 , 1 , 4 , 5 , 6 , 1 , 7 , 1 , 8 , 9 , 4 , 2 , 10 , 11 , 12 , 13 , 13 , 14 , 13 , 1 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 4 , 15 , 14 , 14 , 14 , 14 , 13 , 13 , 13 , 4 , 4 , 4 , 1 , 16 , 1 , 7 , *
      ,
      Cancers
      MDPI
      breast and ovarian cancer, health services delivery, integrated knowledge translation, interdisciplinary research, oncogenetics, prevention, screening, treatment

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          We recently developed an oncogenetic model to overcome the unprecedented demand for genetic counseling and testing for hereditary breast and ovarian cancer. Quality and performance indicators showed that the implementation of this model improved access to genetic counseling and minimized delays for genetic tests for patients, who reported to be overwhelmingly satisfied with the process. However, it remains unknown whether this model is robust and sustainable or requires adjustments. In addition, whether the model could be deployed elsewhere remains also to be elucidated. The C-MOnGene study was therefore designed to gain an in-depth understanding of the context in which the model was developed and implemented, and document the lessons that can be learned to optimize oncogenetic services delivery in other settings.

          Abstract

          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.

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          Using thematic analysis in psychology

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            Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach

            Background Scoping reviews are a relatively new approach to evidence synthesis and currently there exists little guidance regarding the decision to choose between a systematic review or scoping review approach when synthesising evidence. The purpose of this article is to clearly describe the differences in indications between scoping reviews and systematic reviews and to provide guidance for when a scoping review is (and is not) appropriate. Results Researchers may conduct scoping reviews instead of systematic reviews where the purpose of the review is to identify knowledge gaps, scope a body of literature, clarify concepts or to investigate research conduct. While useful in their own right, scoping reviews may also be helpful precursors to systematic reviews and can be used to confirm the relevance of inclusion criteria and potential questions. Conclusions Scoping reviews are a useful tool in the ever increasing arsenal of evidence synthesis approaches. Although conducted for different purposes compared to systematic reviews, scoping reviews still require rigorous and transparent methods in their conduct to ensure that the results are trustworthy. Our hope is that with clear guidance available regarding whether to conduct a scoping review or a systematic review, there will be less scoping reviews being performed for inappropriate indications better served by a systematic review, and vice-versa.
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              Global, Regional, and National Cancer Incidence, Mortality, Years of Life Lost, Years Lived With Disability, and Disability-Adjusted Life-years for 32 Cancer Groups, 1990 to 2015

              IMPORTANCE Cancer is the second leading cause of death worldwide. Current estimates on the burden of cancer are needed for cancer control planning. OBJECTIVE To estimate mortality, incidence, years lived with disability (YLDs), years of life lost (YLLs), and disability-adjusted life-years (DALYs) for 32 cancers in 195 countries and territories from 1990 to 2015. EVIDENCE REVIEW Cancer mortality was estimated using vital registration system data, cancer registry incidence data (transformed to mortality estimates using separately estimated mortality to incidence [MI] ratios), and verbal autopsy data. Cancer incidence was calculated by dividing mortality estimates through the modeled MI ratios. To calculate cancer prevalence, MI ratios were used to model survival. To calculate YLDs, prevalence estimates were multiplied by disability weights. The YLLs were estimated by multiplying age-specific cancer deaths by the reference life expectancy. DALYs were estimated as the sum of YLDs and YLLs. A sociodemographic index (SDI) was created for each location based on income per capita, educational attainment, and fertility. Countries were categorized by SDI quintiles to summarize results. FINDINGS In 2015, there were 17.5 million cancer cases worldwide and 8.7 million deaths. Between 2005 and 2015, cancer cases increased by 33%, with population aging contributing 16%, population growth 13%, and changes in age-specific rates contributing 4%. For men, the most common cancer globally was prostate cancer (1.6 million cases). Tracheal, bronchus, and lung cancer was the leading cause of cancer deaths and DALYs in men (1.2 million deaths and 25.9 million DALYs). For women, the most common cancer was breast cancer (2.4 million cases). Breast cancer was also the leading cause of cancer deaths and DALYs for women (523 000 deaths and 15.1 million DALYs). Overall, cancer caused 208.3 million DALYs worldwide in 2015 for both sexes combined. Between 2005 and 2015, age-standardized incidence rates for all cancers combined increased in 174 of 195 countries or territories. Age-standardized death rates (ASDRs) for all cancers combined decreased within that timeframe in 140 of 195 countries or territories. Countries with an increase in the ASDR due to all cancers were largely located on the African continent. Of all cancers, deaths between 2005 and 2015 decreased significantly for Hodgkin lymphoma (−6.1% [95% uncertainty interval (UI), −10.6% to −1.3%]). The number of deaths also decreased for esophageal cancer, stomach cancer, and chronic myeloid leukemia, although these results were not statistically significant. CONCLUSION AND RELEVANCE As part of the epidemiological transition, cancer incidence is expected to increase in the future, further straining limited health care resources. Appropriate allocation of resources for cancer prevention, early diagnosis, and curative and palliative care requires detailed knowledge of the local burden of cancer. The GBD 2015 study results demonstrate that progress is possible in the war against cancer. However, the major findings also highlight an unmet need for cancer prevention efforts, including tobacco control, vaccination, and the promotion of physical activity and a healthy diet.
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                Author and article information

                Contributors
                Role: Academic Editor
                Role: Academic Editor
                Journal
                Cancers (Basel)
                Cancers (Basel)
                cancers
                Cancers
                MDPI
                2072-6694
                31 May 2021
                June 2021
                : 13
                : 11
                : 2729
                Affiliations
                [1 ]Centre de Recherche du CHU de Québec-Université Laval, Hôpital du Saint-Sacrement, 1050, Chemin Ste-Foy, Local J0-01, Québec, QC G1S 4L8, Canada; Julie.Lapointe@ 123456crchudequebec.ulaval.ca (J.L.); Michel.Dorval@ 123456pha.ulaval.ca (M.D.); jocelyne.chiquette@ 123456chudequebec.ca (J.C.); jason.guertin@ 123456fmed.ulaval.ca (J.R.G.); maude.laberge@ 123456fsa.ulaval.ca (M.L.); karine.bouchard@ 123456crchudequebec.ulaval.ca (K.B.); jacques.simard@ 123456crchudequebec.ulaval.ca (J.S.)
                [2 ]Centre de Recherche CISSS Chaudière-Appalaches, 143 Rue Wolfe, Lévis, QC G6V 3Z1, Canada; johanne_hebert@ 123456uqar.ca
                [3 ]Faculté de Pharmacie, Université Laval, 1050 Av de la Médecine, Québec, QC G1V 0A6, Canada
                [4 ]CHU de Québec-Université Laval, 1050, Chemin Ste-Foy, Québec, QC G1S 4L8, Canada; jean.gekas@ 123456chudequebec.ca (J.G.); josee.rheaume@ 123456chudequebec.ca (J.R.); karine.boisvert@ 123456chudequebec.ca (K.B.); claire.brousseau@ 123456chudequebec.ca (C.B.); lysanne.castonguay@ 123456chudequebec.ca (L.C.); sylvain.fortier@ 123456chudequebec.ca (S.F.); isabelle.gosselin@ 123456chuq.qc.ca (I.G.); philippe.lachapelle@ 123456chudequebec.ca (P.L.); sabrina.lavoie@ 123456chudequebec.ca (S.L.); brigitte.poirier.med@ 123456ssss.gouv.qc.ca (B.P.); marie-claude.renaud.med@ 123456ssss.gouv.qc.ca (M.-C.R.); maria-gabriela.ruizmangas@ 123456chudequebec.ca (M.-G.R.); alexandra.sebastianelli@ 123456fmed.ulaval.ca (A.S.); stephane.roy@ 123456chudequebec.ca (S.R.); parole.onco@ 123456chudequebec.ca (M.C.); Marie.Plante@ 123456crchudequebec.ulaval.ca (M.P.); christinedesbiens@ 123456live.ca (C.D.); martin.beaumont@ 123456chudequebec.ca (M.B.)
                [5 ]Institut de Recherche du Centre Universitaire de Santé McGill, 2155 Rue Guy, 5e étage, Montréal, QC H3H 2R9, Canada; Yann.Joly@ 123456mcgill.ca
                [6 ]Département de Génétique Humaine et Unité de Bioéthique, Faculté de Médecine, Université McGill, 3605 Rue de la Montagne Montréal, Montréal, QC H3G 2M1, Canada
                [7 ]Département de Médecine Sociale et Préventive, Faculté de Médecine, Université Laval, 1050 Avenue de la Médecine, Université Laval, Québec, QC G1V 0A6, Canada
                [8 ]Vitam, Centre de Recherche en Santé Durable, Université Laval, 2525, Chemin de la Canardière, Québec, QC G1J 0A4, Canada
                [9 ]Département des Opérations et Systèmes de Décision, Faculté des Sciences de l’Administration, Université Laval, 2325 Rue de la Terrasse Université Laval, Québec, QC G1V 0A6, Canada
                [10 ]Département des Sciences Infirmières, Université du Québec à Rimouski (UQAR), Campus de Lévis, 1595 Boulevard Alphonse-Desjardins, Lévis, QC G6V 0A6, Canada
                [11 ]Centre de Recherche du CHUM, 900, Rue Saint-Denis, Montréal, QC H2X 0A9, Canada; marie-pascale.pomey@ 123456umontreal.ca
                [12 ]Département de Gestion, Évaluation et Politique de Santé, Faculté de Médecine, Université de Montréal, 7101 Avenue du Parc, 3e Étage, Montréal, QC H3N 1X9, Canada
                [13 ]CIUSSS Saguenay Lac-St-Jean, 930 Rue Jacques-Cartier Est, Chicoutimi, QC G7H 7K9, Canada; tania.cruzmarino.csssc@ 123456ssss.gouv.qc.ca (T.C.-M.); omar.touhami.med@ 123456ssss.gouv.qc.ca (O.T.); sylvain.gagnon.med1@ 123456ssss.gouv.qc.ca (S.G.); valerie.faucher@ 123456ssss.gouv.qc.ca (V.F.); josianne.leblanc@ 123456ssss.gouv.qc.ca (J.L.); marie.eve.dubeau@ 123456ssss.gouv.qc.ca (M.-È.D.)
                [14 ]CISSS Bas St-Laurent, 150 Av Rouleau, Rimouski, QC G5L 5T1, Canada; arnaud.blanchet-saint-pierre.1@ 123456ulaval.ca (A.B.S.-P.); marie-claude.roy.cisssbsl@ 123456ssss.gouv.qc.ca (M.-C.R.); nathalie.cote0104.cisssbsl@ 123456ssss.gouv.qc.ca (N.C.); carmybrisson@ 123456hotmail.fr (C.B.); nelson.charette.cisssbsl@ 123456ssss.gouv.qc.ca (N.C.)
                [15 ]CISSS Chaudière-Appalaches, 101 Rue du Mont-Marie, Lévis, QC G6V 5C2, Canada; Marie-MichelleRacine@ 123456ssss.gouv.qc.ca
                [16 ]Département de Médecine moléculaire, Faculté de Médecine, Université Laval, 1050 Avenue de la Médecine, Québec, QC G1V 0A6, Canada
                Author notes
                [* ]Correspondence: Hermann.Nabi@ 123456crchudequebec.ulaval.ca ; Tel.: +1-418-525-4444 (ext. 82800)
                Author information
                https://orcid.org/0000-0003-1718-5307
                https://orcid.org/0000-0003-1274-136X
                https://orcid.org/0000-0003-4023-9246
                Article
                cancers-13-02729
                10.3390/cancers13112729
                8198545
                34072979
                c895be83-ebad-448f-85c0-28a0014e6300
                © 2021 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( https://creativecommons.org/licenses/by/4.0/).

                History
                : 24 February 2021
                : 25 May 2021
                Categories
                Study Protocol

                breast and ovarian cancer,health services delivery,integrated knowledge translation,interdisciplinary research,oncogenetics,prevention,screening,treatment

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